tag:blogger.com,1999:blog-50747560292666696812024-03-28T17:07:59.567+00:00A Girl Called NaomiHi I'm Naomi, I blog about all sorts of things including living with disabilities, disability awareness and advocacy, crafting, wellbeing, technology, things I love, product reviews and much more. I post every Tuesday and on the 1st of every month I share a 'Monthly Make' craft tutorial.Unknownnoreply@blogger.comBlogger345125tag:blogger.com,1999:blog-5074756029266669681.post-14447285185367304502024-03-19T09:45:00.001+00:002024-03-19T09:45:57.318+00:00Crash<p>Crashing is what people in the M.E. community refer to when they experience a flare up of symptoms, usually quite significantly.</p><p>This is what a crash can look like: You become more hypersensitive to sound, light, touch, smells, even small amounts of sensory stimulation can be difficult even physically painful. Pain levels increase and energy levels decrease even more than usual. Muscles weaken, ache and spasm, you struggle to tolerate being sat up so you have to lay in bed, your immune system goes down and you experience cold and flu-like symptoms.</p><p>A crash can last a day, a few days, a week or two, or even months. Crashes are usually brought on by over exertion or an illness or such thing. Sometimes especially for those with severe M.E. even a small amount of ‘overdoing it’ can trigger a crash.</p><p>Living with M.E. is like walking on eggshells as I don’t know what will trigger a crash or when I will crash and when I do crash I don’t know how long I’ll crash for or how severe the crash will be. Sometimes I can predict a crash such as when I had my last surgery, when I was in the process of moving, when I leave the house, but I still don’t know the severity or length of my crash. Sometimes even just having a tidy up in my home and over exerting myself that way will lead to a minor crash lasting a day or two. Leaving the house definitely leads to a crash.</p><p>Sometimes I crash immediately afterwards like if I’ve overdone it on an activity and then I’ll spend the rest of the day and the next in bed with zero energy, in pain etc. Other times the crash can have a delayed onset, like it won’t hit me until the following day.</p><p>For me crashes are the hardest aspect of living with M.E. and they’re difficult for so many different reasons. The first few I’ve already mentioned: the heightening of my symptoms, the unpredictability in lots of ways. Also the emotions, like upset of the amount of pain and fatigue I’m in. FOMO: the Feeling Of Missing Out, frustration and regret wishing I hadn’t done what caused my crash but also frustration at my M.E. plus the isolation as well as grief. Then also there is the challenge of needing more support from my care team (PAs and carers) as I’m not able to do as much myself so there’s more reliance on their support taking away my independence and dignity. Finally with long term crashes there is always that worry and questioning ‘is this my new normal now?’ when the crash is no longer a crash but how things are for me from now on.</p>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-18053322254669482512024-03-15T13:20:00.004+00:002024-03-21T12:08:40.745+00:00Living with Severe M.E.<p>It can be really difficult living with severe M.E., I spend so much time here in my bed, in my bedroom. I’ve found it important over the years to make my bedroom a lovely space to be in. Here are some of my tips I’ve found that have helped me cope with having M.E. in different ways. From making my bedroom a lovely space to just general ways of coping day-to-day - some things I plan to go into more detail in future blog posts </p><p><br /></p><h2 style="text-align: left;">Bring the outside world in</h2><p style="text-align: left;">Whenever my family go on holiday they collect a selection of postcards for me. This allows me to experience different places around the UK and the world. I also love it when they send photos of places they’re visiting. </p><div><br /></div><h2 style="text-align: left;">Personalise your bed </h2><p style="text-align: left;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjK8cNh9x1y0MDkpzcRqzT_kke0Ss5G9fPsu8jHGyr0nieRvOSBole1l3fCywkWtFALvsNlV7ByVhXwmsVPcSY6pqrwX9S8aaY_ZHvBsnLf-HoGpz-p6X0Y_pbscbthvGt8IEQzLj-yjxCgNBdOzMIMd3yxU3_epFTfQ26Jc1XB69HnTxNgPfkn0a1XXN2s/s4032/IMG_5538.jpeg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="4032" data-original-width="2268" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjK8cNh9x1y0MDkpzcRqzT_kke0Ss5G9fPsu8jHGyr0nieRvOSBole1l3fCywkWtFALvsNlV7ByVhXwmsVPcSY6pqrwX9S8aaY_ZHvBsnLf-HoGpz-p6X0Y_pbscbthvGt8IEQzLj-yjxCgNBdOzMIMd3yxU3_epFTfQ26Jc1XB69HnTxNgPfkn0a1XXN2s/w133-h235/IMG_5538.jpeg" width="133" /></a></div>I find having my favourite bedding and washing it in my favourite laundry projects such a lovely thing. Having my favourite bedding gives my bedroom a touch of my personality and accessorising it with things like blankets just makes my bed a lovely place to spend time in. I also have my comfy body pillow - maybe you could add some cushions too. I also find having normal bedding on my profiling bed and medical mattress makes my bed look less clinical.<p></p><div><br /></div><h2 style="text-align: left;">Use your imagination</h2><p style="text-align: left;">Imagination can be such a powerful thing. On my worst days or when I have a migraine or I can’t tolerate any light or sound I turn to my imagination. I’ve been all around the world: to Central Park, the Blue Mountains in Australia, to the Costa Rican rainforest and to my own private beach in the Maldives.</p><p style="text-align: left;">If I can tolerate it I listen to soundscapes and let them aid my imagination to take me to different places.</p><p style="text-align: left;">I find my imagination relaxes me as well as distracting me from the increase of my symptoms that I get on my bad days.</p><div><br /></div><h2 style="text-align: left;">Lighting</h2><p style="text-align: left;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbe0CipVuiHihgrjV0fkeZQ1bk9mTl4iWCNNzHT44Pm59gGFLIQb_DEU9NllnRI5lEm-OyIvzQ4xP-0ON-7io3ln3LqeoCX-1PYx7XZMALCLAqlg8X4HrdnRff5Z5hTC-YQeYWr27k1eUy53wgs0Sr-l2T2SrDgzW1RjjQFjTs5je1pmY9G18grZ4Ckb6I/s3024/IMG_6383.jpeg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="3024" data-original-width="3024" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbe0CipVuiHihgrjV0fkeZQ1bk9mTl4iWCNNzHT44Pm59gGFLIQb_DEU9NllnRI5lEm-OyIvzQ4xP-0ON-7io3ln3LqeoCX-1PYx7XZMALCLAqlg8X4HrdnRff5Z5hTC-YQeYWr27k1eUy53wgs0Sr-l2T2SrDgzW1RjjQFjTs5je1pmY9G18grZ4Ckb6I/w200-h200/IMG_6383.jpeg" width="200" /></a></div>Lighting is a great way to create a lovely space in your bedroom. I love fairy lights and my sensory lighting. I have a <a href="https://mathmos.com/lava-lamps/lava-lamp-projector/" target="_blank">Mathmos Space Projector</a> as well as a <a href="https://www.amazon.co.uk/dp/B07Q38NRTD?psc=1&ref=ppx_yo2ov_dt_b_product_details" target="_blank">mushroom lamp</a> that offers different light modes such as a choice of colour, brightness and a colour changing mode; this lamp comes with a handy remote.<p></p><p style="text-align: left;">Smart lighting I find is really helpful on a practical level too as I can control my bedside lamp from my phone or with my voice. I can set it to different levels of brightness as well as the tone of the light colour.</p><div><br /></div><h2 style="text-align: left;">Get green fingered</h2><div>If you’re able to, in terms of letting light into your room and also able to look after plants having plants in your room can be another way of bringing a bit of the outside into your room. Plants like succulents and peace lilies and oxalis’ are very easy to look after.</div><div><br /></div><h2 style="text-align: left;">Dealing with medical supplies in your bedroom </h2><p style="text-align: left;">Sometimes it can be hard to get the balance right when you have medical equipment and supplies in your bedroom. You don’t want your bedroom looking too clinical whilst at the same time having what you need and having supplies at hand and having the equipment you need to aid your independence and health.</p><p style="text-align: left;">For me I have a profiling bed and air mattress; I find having nice bedding on it makes it look a little less clinical and at the foot of the bed where the mattress motor is I’ve put a little bunting. I also have a Flexzi iPad stand and I chose pink so it adds a pop of colour. My over bed table doesn’t look out of place. I’ve seen people decorate their IV poles and I've also seen medical supplies cupboards with coloured accents or I’ve seen people use the three tier trollies for supplies. For me I keep what supplies I need at hand in one of my bedside drawers and in a box under my bed then the remaining supplies I’ve organised hidden away into draws in my wardrobe and in a large cupboard in my bathroom.</p><p style="text-align: left;">Sometimes though it’s inevitable that medical equipment from beds, IV poles, mobility aids, hoists and supplies having to be out for ease of access or simply because they can’t be moved out the way as they’re needed frequently or they fixed in place.</p><div><br /></div><h2 style="text-align: left;">Aids, equipment & gadgets</h2><p style="text-align: left;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizub6_NrhgCU3NrX_Ft_lhMrjy4K6yAgCcMBIN7njId-CcmBFo9BR84i9G0ML2nzHdZMchHT8HW91eXx4dM6eEwfQO9TZwYDnyl7upcuQMrpW4I0TQsX2KZmlrU5czPFaBzzPpth8D7tSMTGLOcvCVFaoBBnhlvoVlROforVRvgi2Dk_9clwOpH2lXfjsn/s4032/IMG_6540.jpeg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizub6_NrhgCU3NrX_Ft_lhMrjy4K6yAgCcMBIN7njId-CcmBFo9BR84i9G0ML2nzHdZMchHT8HW91eXx4dM6eEwfQO9TZwYDnyl7upcuQMrpW4I0TQsX2KZmlrU5czPFaBzzPpth8D7tSMTGLOcvCVFaoBBnhlvoVlROforVRvgi2Dk_9clwOpH2lXfjsn/s320/IMG_6540.jpeg" width="240" /></a></div>It can be really helpful to get some gadgets in your room to make life a bit easier and to give you a bit more independence. <p></p><p style="text-align: left;">One of my favourite gadgets is my <a href="http://www.agirlcallednaomi.com/2024/02/product-review-meru-flexzi-3.html" target="_blank">Flexzi iPad holder</a> it’s amazing for positioning my iPad whilst I’m reclined or laid in bed and I have to spend a lot of time like this in bed. </p><p style="text-align: left;">Another really helpful item is my over bed tabled, part of the table tilts so it’s great for being able to do activities in bed. I’ve also clipped a rechargeable light onto my table too. An alternative is a a bed table; I have a lovely bamboo one that also has a portion that tilts or another option is just a simple lap tray, personally I prefer the ones that curve around you.</p><p style="text-align: left;">I also find <a href="http://www.agirlcallednaomi.com/2021/08/dyson-fan-review.html" target="_blank">my Dyson fan</a> great for my room. I have the hot+cool fan so it’s perfect for all year round. I can control it from my phone or with voice commands or alternatively with the remote. Even though I live on my own it can be helpful to use the heater on my Dyson as it means I don’t have to get up to turn the thermostat up if I’m not able too. For me I struggle with dysautonomia so I find it hard to stay cool or warm up so it’s important to have my room cool/warm to manage my symptoms.</p><p style="text-align: left;"><br /></p><h2 style="text-align: left;">Audiobooks have been a lifeline for me</h2><p style="text-align: left;">On my bad days or when I’m fatigued there’s little I can do. Audiobooks have become a lifeline for me and they help keep me occupied. They also aid my imagination and I love listening to a wide variety of genres.</p><p style="text-align: left;">If because of your disability you have a ‘print disability’ which includes those with physical disabilities who struggle to read books as a result such as holding the book or being able to cognitively concentrate or read print etc then you may be eligible for some of the free audiobook libraries such as RNIB and <a href="https://www.listening-books.org.uk/" target="_blank">Listening Books</a> - many local libraries now also have e-libraries with access to free audiobooks. I recently joined my local library on the recommendation by my best friend and I was able to join over the phone.</p><div><br /></div><h2 style="text-align: left;">Activities </h2><p style="text-align: left;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUpYbLVt0WVGs2QcwnmBW6dNdIM7pf4PwrNEspue_vB6yw8A1sfJoP6hVM9KpgWFbob1noW1fyAfXY6RRa5Aaa5DWFqTYUnRt779CQqTSKz38YVh1kcjM4HvhWygIcmeIisbUinm5ONv2ViPMfn9maU8JW8DViEP_cCLeQDsqnfOfv3LCY8veN4qEv_dxN/s4032/IMG_6338.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUpYbLVt0WVGs2QcwnmBW6dNdIM7pf4PwrNEspue_vB6yw8A1sfJoP6hVM9KpgWFbob1noW1fyAfXY6RRa5Aaa5DWFqTYUnRt779CQqTSKz38YVh1kcjM4HvhWygIcmeIisbUinm5ONv2ViPMfn9maU8JW8DViEP_cCLeQDsqnfOfv3LCY8veN4qEv_dxN/s320/IMG_6338.jpeg" width="320" /></a></div>Spending so much time in my bedroom and in my bed I’ve found it important to find ways to do activities I enjoy. These have mainly been low-level activities as it’s mostly what I can tolerate but I’ve found ways to be able to do more energy consuming activities too.<p></p><p style="text-align: left;">Some ways I’ve found the ability to do activities is from using my Flexzi iPad stand which I can mount my iPhone onto as well. My table which I mentioned above has also really enabled me to do activities whilst in bed too though sometimes I use my lap tray.</p><p style="text-align: left;">There are many activities that can easily be done from your bed: different crafts, activity books, reading, listening to audiobooks/podcasts/music/radio, watching television programs, gaming, writing, journaling, blogging, filming for social media - the list goes on and I will do a dedicated blog post on this topic at some point soon.</p><div><br /></div><h2 style="text-align: left;">Feeling pretty</h2><p style="text-align: left;"></p><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhukqFVwaiyPcjNvnwyTjK-d9CnWtpkIlPJ6ARbhyKGZqfYLovAMDMzqkouEz6vqV5HD-5AvTotyIjurF82i0yCg547GSmABDF6lYRMVWwLEOc2CHcBDUi_6mjrKC39jLPINFPOgrytl3F9pgewg3DfnwMcVk8nJtIyKticCpGh1vKXpMYf55Sgft-3A4M0/s3024/7C23B2E0-31EB-4581-AC1E-8F4DFB5F5D6D.jpeg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="3024" data-original-width="3024" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhukqFVwaiyPcjNvnwyTjK-d9CnWtpkIlPJ6ARbhyKGZqfYLovAMDMzqkouEz6vqV5HD-5AvTotyIjurF82i0yCg547GSmABDF6lYRMVWwLEOc2CHcBDUi_6mjrKC39jLPINFPOgrytl3F9pgewg3DfnwMcVk8nJtIyKticCpGh1vKXpMYf55Sgft-3A4M0/w200-h200/7C23B2E0-31EB-4581-AC1E-8F4DFB5F5D6D.jpeg" width="200" /></a></div>Sometimes when I’m feeling up to it putting on a bit of makeup can make me feel much brighter. I also like to dress up nicely too some days even though I’m not going anywhere or seeing anyone other than PAs/carers. Another thing I do is styling my hair or if there’s some free time getting my PA to curl my hair for me. I also like to spend time on my nails too, painting them and doing nail art.<p></p><p style="text-align: left;"><br /></p><h2 style="text-align: left;">Friendships</h2><p style="text-align: left;">For me my friends remind me I’m not alone and that I’m not forgotten. My friends are people I can talk to about anything, good or bad. If either of us are having a difficult time or just to chat about our day, what books we’re listening to, to motivate one another, to have someone to confide in. Just simply being a friend. Oh and to exchange funny animal videos with - that friend if you’re reading this you know who you are!</p><p style="text-align: left;">Friendships are really important because of the isolation we live in. I don’t have any friends locally and for some people meeting with friends in person can only be brief or not possible due to the limits of their M.E. Technology really helps. I chat to my friends on WhatsApp, sometimes it’s typed messages with other friends we send voice messages; it’s whatever is easier for us to do but it keeps us connected. I also like to write to my friends too the old fashioned way through the mail.</p><div><br /></div><div><h2>Pen pals</h2><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgs60JDopCaWPTQTqxWab9lIiYBszR-Azv7aag_h8xIPygntz2nQvn7z-ErrFW7BdkX3wJo0XNM_l00xxteb2fpuV6s6B6HkZx3xLJVHj7Kz8kaCv6IgQGiWici31af4QXJrUdig_lxgCDpxA_IOGIrRhRhGugrctwK0bnpfBNWIyLOBQK4B2oPeBAoKdwc/s4032/IMG_6382.jpeg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgs60JDopCaWPTQTqxWab9lIiYBszR-Azv7aag_h8xIPygntz2nQvn7z-ErrFW7BdkX3wJo0XNM_l00xxteb2fpuV6s6B6HkZx3xLJVHj7Kz8kaCv6IgQGiWici31af4QXJrUdig_lxgCDpxA_IOGIrRhRhGugrctwK0bnpfBNWIyLOBQK4B2oPeBAoKdwc/s320/IMG_6382.jpeg" width="320" /></a></div>Pen palling is something that really helps me. For me it gives me a connection to the outside world and to other people. I love reading about my pen pals and friends life’s and what they’ve been up to and writing back to them; it takes my mind off what I’m going through physically as I’m replying writing about what I’ve been up to such as what books I’m currently reading/listening to or discussing something with a pen pal such as the antics their pets get up to or their work or college course. I also feel like I’m talking to a friend when I write my mail replies too.<p></p><p>I also join in the <a href="https://www.warriorcardswap.com/" target="_blank">Warrior Card Swap</a> which is a monthly scheme where you send mail to someone and you receive mail back from someone else. I really enjoy this and if I’m ever having a bad month I can always opt out. Through this card swap I’ve made friends and found new pen pals.</p><p>I love displaying my mail on my notice board too. On there I put the cards, postcards and other bits I’m sent. Looking at my notice board reminds me of the kindness of the person writing to me and the quotes on there have a personal meaning to me. Again like my friends my notice board reminds me I’m not alone and that people are thinking of me.</p></div><div><br /></div>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-91830679408167783352024-03-09T14:33:00.001+00:002024-03-09T14:33:15.379+00:006 tips for living with limited energy <p>Living with an energy limiting illness can be difficult in many different ways. Each person’s experience is different and you may experience additional symptoms. Also for some people they have more cognitive energy than physical energy or whilst others experience their energy levels the other way around. As well everyone experiences a varying severity in the limit in their energy levels, so these are just some general tips that I’ve found to be helpful that I want to share with you.</p><p><br /></p><h2 style="text-align: left;">1. Learn to pace out your day</h2><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFPCTEdiEq7x-QZi9idbJ0OXeWTdsuH50ICsBzJc8W3cLDgGUCj2Jr2CKF7thQPMU6BPEp-8avaOxc3_zvxsZzZLboZWubvU3BSTEio5rBuTTo3WeKdTD2AHshesEnbWZSdxNQVXxNAnv47YB8PzjcMX7UiGuFtAWz_qDSIm59JBFOPNU2pKVvUgd_ORp-/s2566/IMG_6305.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1898" data-original-width="2566" height="237" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFPCTEdiEq7x-QZi9idbJ0OXeWTdsuH50ICsBzJc8W3cLDgGUCj2Jr2CKF7thQPMU6BPEp-8avaOxc3_zvxsZzZLboZWubvU3BSTEio5rBuTTo3WeKdTD2AHshesEnbWZSdxNQVXxNAnv47YB8PzjcMX7UiGuFtAWz_qDSIm59JBFOPNU2pKVvUgd_ORp-/s320/IMG_6305.jpeg" width="320" /></a></div>Pacing and activity management are going to be your best friend. The best way to visualise it is <span style="color: #cc0000;">high level energy </span>activities <span style="caret-color: rgb(255, 164, 0);"><span style="color: #e69138;">medium level </span>activities and <span style="color: #6aa84f;">low level </span>activities as well as <span style="color: #3d85c6;">rest</span>. I find this traffic light system great as it’s visual but also it’s flexible as what can one day be a medium level activity on a different day can become a high level activity if your energy levels are more depleted.</span><p></p><p><span style="caret-color: rgb(255, 164, 0);">I use this colour code system on a day planner, or on my to-do list or I use the <a href="https://stickmancommunications.co.uk/product/to-do-list/" target="_blank">traffic light pacing list pad</a>* to plan my day. </span></p><p><span style="caret-color: rgb(255, 164, 0);">The key to pacing and with it being so visual I can see that if there’s a red task I’ve just done I know to follow it with either a green task or a rest period therefore I’m pacing myself and I’m not going to overdo it with my limited energy. I also know to limit the time I spend on a red task and when to do it in the day. If I do an orange task I know to follow it with a green task and then to rest and so on.</span></p><p><span style="caret-color: rgb(255, 164, 0);">*from Stickman Communications © - they have some great pacing resources in their shop including a very user friendly little book all about pacing. I got this magnetic planner set from there too.</span></p><p><span style="caret-color: rgb(255, 164, 0);"><br /></span></p><h2 style="text-align: left;">2. Do your most energy consuming activity at the time of day when you have the most energy </h2><p>Work out when in the day you have optimal energy. This is different for everyone for me it’s early afternoon but for others it’s in an evening. Use this time when you have the most energy to do your most energy consuming activity or activities for that day but try to limit it to only one or two activities so you don’t over spend your limited energy.</p><p><br /></p><h2 style="text-align: left;">3. If you’re getting tired STOP and rest</h2><p>This is something I’m always not the best at doing and I’m always trying to tell myself not to do anything if I’m feeling tired. It’s easier said than done!</p><p>If you’re noticing that you’re starting to feel fatigued either don’t start to do any activity and just rest instead or if you’re in the middle of an activity and you’re starting to tire just neatly pack up (you can pack away properly another time) and just leave to go rest. You’ll perform better when you’re not feeling absolutely exhausted and if you do any activity whilst feeling utterly fatigued you’ll only make yourself feel worse.</p><p>When you rest either do a really low-level activity or what I do when I need to just stop and rest is lay in bed and listen to a soundscape. </p><p><br /></p><h2 style="text-align: left;">4. Time your activities </h2><p style="text-align: left;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi470N1wmeepQfeS8Qoqa78h-zp3Wl_EFggrjLcE9IlJ5xRa2uUZZiyg1S8YfkiSH9F_sTy4G2Psgiv75wQPyBuGUydLLsBM0G4n4GMqsM0O7pYwklwOye6e6m6DiSI2gmQsIOnPTyddwl3ZlVMVVfimcnMmcTDuEw0D3IHAM5jkKqxE_tqE0gD5oU9bl5b/s3202/IMG_6686.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="3202" data-original-width="2524" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi470N1wmeepQfeS8Qoqa78h-zp3Wl_EFggrjLcE9IlJ5xRa2uUZZiyg1S8YfkiSH9F_sTy4G2Psgiv75wQPyBuGUydLLsBM0G4n4GMqsM0O7pYwklwOye6e6m6DiSI2gmQsIOnPTyddwl3ZlVMVVfimcnMmcTDuEw0D3IHAM5jkKqxE_tqE0gD5oU9bl5b/w252-h320/IMG_6686.jpeg" width="252" /></a></div>When doing a high or medium level activity work out your activity limit. This is different for everyone and may vary depending on what kind of a day you’re having. For me my activity limit is 20-30 minutes usually depending on the activity.<p></p><p style="text-align: left;">Once you know your activity limit which will be trial and error I find it helpful to set a timer for 20 or 30 minutes to ensure I don’t overdo it and over exert myself which might impact on my fatigue levels crashing. </p><p style="text-align: left;">Another thing that I was told to do was on my to-do list put how long each task is going to task me to do, such as: put laundry on - 5 minutes, write to pen pal (my main activity for the day) - 30 minutes, call pharmacy - 10 minutes. By putting times on my to-do list it ensures I can fit in rest periods during the day as well as factoring the time it takes me to switch from doing the laundry to calling the pharmacy.</p><p><br /></p><h2 style="text-align: left;">5. Use aids, equipment and gadgets etc.</h2><p>Using aids, equipment or gadgets can help share the task and help reduce fatigue or help you keep going for longer and allow you to do more.</p><p>There is so so so much out there depending on your, your medical condition and your needs. From gadgets and pieces of equipment to use around your home through to mobility aids. A few examples could be using a shower stool to reduce fatigue when showering, I have many kitchen gadgets that help me save energy like my hands free tin opener, also different mobility aids from walking sticks to rollators to wheelchairs can help reduce fatigue - if you’re unsure about mobility aids speak with an Occupational Therapist or physiotherapist for advice on what is best for you.</p><p><br /></p><h2 style="text-align: left;">6. Don’t be afraid to ask for help</h2><p>Asking for help isn’t a sign of weakness, it’s actually a sign of strength. This could be asking for help from a family member, friend or even a professional.</p><p>It could be asking someone to help you change the sheets on your bedding to reduce your fatigue, or asking for someone to make your lunch for you, or a family member to wash your hair or to employ or ask social services for help and have a PA/carer to help you out. Other things could be to get a cleaner or dog walker or even if you have children give them school meals to save your energy on making packed lunches.</p>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-58174969124766104892024-03-02T15:42:00.008+00:002024-03-09T14:34:19.389+00:00‘I love your wheels’ - International Wheelchair Day<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4xMMQ5H5QrTUKvm9FFsbroEMBtnD5JY8jB4cv38M9gtdfc055800pBy2f-EX_9fvN_H0Kj-SP5yvYF2F576lfJtCbPJfQhNbX0t6dER157HkAJA_AgoyKmlfla-Mq7k0fUgILXGLadG6cCrPUac_JhVGmzdhzVNYVytszp0cVT_x-wm_q5JvUBRp4-ZME/s1799/D9DA9E2D-8566-49A3-8F32-B8B048DE419F.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1799" data-original-width="1799" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4xMMQ5H5QrTUKvm9FFsbroEMBtnD5JY8jB4cv38M9gtdfc055800pBy2f-EX_9fvN_H0Kj-SP5yvYF2F576lfJtCbPJfQhNbX0t6dER157HkAJA_AgoyKmlfla-Mq7k0fUgILXGLadG6cCrPUac_JhVGmzdhzVNYVytszp0cVT_x-wm_q5JvUBRp4-ZME/s320/D9DA9E2D-8566-49A3-8F32-B8B048DE419F.jpeg" width="320" /></a></div>When I go out I aways smile when I hear ‘I love your wheels’. <p></p><p>In the UK there are 1.2 million wheelchair users and around 1 in 3 of them like me are ambulatory wheelchair users. Being an ambulatory wheelchair user means that I can walk/stand without the use of a wheelchair; in place of my chair I use crutches, but I still need the aid of a wheelchair in certain situations such as when I leave the house as my walking ability is limited; as well my mobility ability can fluctuate. Alongside this I’m much safer in my wheelchair and sitting in my chair it reduces my pain and fatigue levels and allows me to do more than what I can manage to do on two legs.</p><p>I feel proud to be a wheelchair user; what has helped me accept my wheelchair over the years is accessorising it so my chair represents ‘me’ hence why I love it when people comment on how I’ve accessorised my wheelchair as I feel that in that comment they see me and not my chair. Some accessories are purely decorative like my Izzy Wheels spoke covers others are ‘pretty and practical’ like my push rim covers, my FFORA bags and cup holder and other bags I have on my chair plus my Bundle Bean wheelchair cosy and also my new Flexzi phone holder. (Yes there’s a lot that I’ve added to my chair I know!) <a href="https://youtu.be/lRXesQGFUY8?si=qxXNQ1hH246OHGwV" target="_blank">Here is a video</a> on how I’ve accessorised my wheelchair.</p><p><br /></p><h2 style="text-align: left;">Advice I’d give</h2><div><br /></div><h3 style="text-align: left;">To those who haven’t yet started to use a wheelchair </h3><p style="text-align: left;">If you’re struggling with your mobility and you think a wheelchair might help you speak with your GP, consultant, Occupational Therapist or Physiotherapist. This is what I did, I asked my neurologist if he thought a wheelchair would be helpful to me and he thought one would so he referred me to Wheelchair Services and I was provided with a manual self-propelled wheelchair. </p><p>I’m grateful that I have a wheelchair on the NHS; it does the job though I would someday like to get an ‘active’ wheelchair that is more lightweight with the customisations that would better meet my needs as well as having an electric add-on for my chair but these can all come at a high cost which I can’t justify just yet and my current wheelchair is just about doing the job.</p><h3 style="text-align: left;"><br /></h3><h3 style="text-align: left;">Getting a wheelchair</h3><p>My advice is to try the NHS Wheelchair Services first; you may get a wheelchair through them. Alternative you may be eligible for a voucher to put towards purchasing your own wheelchair instead of having an NHS provided wheelchair.</p><p>If this option isn’t available to you think about your budget and whether you want a manual or electric wheelchair or even a mobility scooter. There are lots of options out there, read and watch different reviews on different chairs and look at different wheelchair users on social media to see what chair they use to narrow down your choices. Contact different mobility dealers and try out different chairs to see which one you like the best take them apart to get the feel of how easy they are to assemble and resemble and feel the weight of the chair too including the battery if it’s an electric wheelchair. If you’re thinking of a manual chair look at all the customisation options (including prices) and what custom options you might need like a high backed seat or height adjustable handles if you need someone to push you. Think about the weight of the chair; how are you going to transport it? such as how it comes apart to put it into the boot or will you get a Wheelchair Accessible Vehicle? Think about how often you will be using the wheelchair, will you be just using it outdoors occasionally or all the time or indoors too? Think about how you will get on and off the chair. With a manual wheelchair think about what seat cushion you’ll need to get. Will you get an electric add-on for your manual wheelchair. Consider the battery life on electric wheelchairs and how far you can travel on it. These are just a few of many things to consider so do your research.</p><p><br /></p><h3 style="text-align: left;">Adapting to first using a wheelchair </h3><p style="text-align: left;">Like I mentioned above accessorising and personalising my wheelchair has helped me make my wheelchair more ‘me’. I didn’t immediately do this overnight the adaptations have just come over time but it is something I’d recommend doing if you’d like to and your wheelchair allows you to personalise it.</p><p style="text-align: left;">There are definitely some helpful things to have. I’d say my FFORA bags and cup holder are really handy to have, plus my push rim covers (I learnt to pop my first wheelie the other day because of them!) and also my Bundle Bean.</p><p style="text-align: left;">It can be daunting when you first start to use a wheelchair especially out in public, there’s lots of things to get used to such as wheelchair accessibility and navigating around in your chair as well as maybe the public’s attention on a wheelchair user. Thankfully I’ve never had any negative experiences especially as an ambulatory wheelchair user.</p><p style="text-align: left;">If you’re self-propelling your chair one thing to get right is the rhythm of pushing your chair so you don’t tire your arms out. This is a fab video from <a href="https://youtu.be/6R9T-24ubz8?si=Xdh26o_D4E_rj0FM" target="_blank">Gem at WheelsNoHeels</a> on her YouTube channel showing how to correctly propel and push yourself in a wheelchair as well as how to pop a little wheelie. Gem has lots of helpful videos like this on her channel so I’d definitely recommend checking her out.</p><p style="text-align: left;">My advice is when you first start to go out in your wheelchair I’d take someone along with, just for support or to take over pushing your chair if you get tired, to help you get it in/out the car or to negotiate public transport, or for those ‘just in case emergencies’ like your electric wheelchair battery running out of juice.</p><p style="text-align: left;">Another thing to consider is parking. If you’re eligible it will be worth applying for a disabled parking badge. This will make going out in your wheelchair much easier as you’ll be closer to where you need to be and you’ll have the additional space to get you’re wheelchair out the car and also to get in/out your wheelchair.</p><p style="text-align: left;"><br /></p><h2 style="text-align: left;">Some of my recommended accessories</h2><div><ul style="text-align: left;"><li><a href="https://liveffora.com/collections/all" target="_blank">FFORA</a> - an attachment system for manual wheelchairs which you can attach a FFORA bag or cup holder onto, there are a variety of bags to choose from the attachment system comes in different colours as does the cup holder. <a href="http://www.agirlcallednaomi.com/search?q=Ffora" target="_blank">Here</a> is a blog post review on my FFORA products I also have <a href="https://youtu.be/WTL7IC6npl4?si=uiOJtoNmZGuTQeKy" target="_blank">this review video</a> and <a href="https://youtu.be/gW7TLB4N0jo?si=AnSxpzkiGJMVoUkm" target="_blank">this video</a> showing you this interior of each of FFORA’s bag designs. The bags also come with cross body straps so great if your cup holder is in use or you just want to wear your bag as an ordinary cross body bag<br /></li><li><a href="https://www.izzywheels.com/" target="_blank">Izzy Wheels</a> - spoke covers for manual self-propelled wheelchairs <br /></li><li><a href="https://bundlebean.com/collections/wheelchair-range" target="_blank">Bundle Bean - Wheelchair range</a> - wheelchair cosies, organisers, spoke covers, ponchos etc. in a wide variety of designs <br /></li><li><a href="https://shop.disabilityhorizons.com/products/ultra-grip-wheelchair-push-rim-covers/" target="_blank">Push rim covers</a> - these are the ones I have and would recommend and they come in different colours <br /></li><li><a href="https://www.merushop.org/product/flexzi-1-hd-medium/" target="_blank">MERU Flexzi phone mount</a> - this is just a gadget I use when needed, it comes in different colour options, depending on your needs it might be something that is helpful to you<br /></li><li><a href="https://pickepacke.com/en" target="_blank">Pickepacke bags</a> - I like my Pickepacke bag as it’s behind my legs so the contents are easy to reach plus they’re more secure than having them on the back of my chair <br /></li><li><a href="https://miatui.com/products/mobility-walker-handbag-clips" target="_blank">Mobility clips</a> - these can convert your handbag to allow you to hang it on the back of your chair </li></ul></div><div class="separator" style="clear: both; text-align: center;"><img border="0" data-original-height="1350" data-original-width="1800" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_QsPd6jFaPEmA2l_xp-aGxk4ue3Zhfng-qevqH-W0cr2dq-VA8ieUDkquIfLdyBUv-5xXRiiREwr0b4bPbsZd_gGFQNbFHeL5SI3m19Yuc1DIrLZvE3rnbIjnQK4FeE37x6HEQNwlThA_nmDQy21z-FIq7l1OIZps7dZcLf9vSkymCKRUHkqgobDDwvJb/w640-h480/IMG_0474.jpeg" width="640" /></div>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-63693781671459286342024-02-18T14:55:00.001+00:002024-02-18T14:55:27.842+00:00Product review: MERU Flexzi 3<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsD1R1_sJ4WjYoHU3LILcikx95h67frN66UXq8o3URRh1atYer4rDF5OytTpo5caabfrerFKSKIVjETSunAWpnz2-DKy8J8TXi28edKN4oFOoJaLHaiTMIOI2BLI9HJPSvgv-q4HIYP8Mf9_TWVFNS8dwPhKgqu2lvpelWx8R_9-xFKu0JHxdagg9wQd12/s4032/IMG_6540.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsD1R1_sJ4WjYoHU3LILcikx95h67frN66UXq8o3URRh1atYer4rDF5OytTpo5caabfrerFKSKIVjETSunAWpnz2-DKy8J8TXi28edKN4oFOoJaLHaiTMIOI2BLI9HJPSvgv-q4HIYP8Mf9_TWVFNS8dwPhKgqu2lvpelWx8R_9-xFKu0JHxdagg9wQd12/s320/IMG_6540.jpeg" width="240" /></a></div>I recently bought the <a href="https://www.merushop.org/product/flexzi-3-switch-mount/" target="_blank">MERU Flexzi 3</a> which is a stand for my iPad (or it can be used for other devices) I’d been thinking about getting it for a while, especially after buying the Flexzi 1 stand which I attach to the frame of my wheelchair to mount my iPhone onto.<p></p><p style="text-align: left;">Like most disability gadgets it wasn’t cheap (I did get VAT relief on it so that helped a little and postage was included) but I can say that it’s one of the best gadgets I’ve ever bought.</p><p style="text-align: left;">It comes in either black, green or pink and extensions can be bought to lengthen the mount. It can be moved around quite easily in endless positions and with this product it comes with a part that can mean it can be clamped to a table as well as to a bar. Other options can be purchased from MERU such as iPad cases, additional Velcro patches and press buttons - depending on a person’s need. Personally I just bought online a clear iPad case to put my iPad into to attach it to the Flexzi 3. </p><p style="text-align: left;">As you can see from the photo I just clamp it to the grab rail on the side of my bed. It’s designed well as sometimes I struggle with my hand function but I feel in the design process they considered the hand grip for tightening the clamp to be accessible to those with limited hand function.</p><p style="text-align: left;">The main reason I bought this was because I spend a lot of time in bed, especially reclined so I can manage my M.E. and symptoms like orthostatic intolerance, tachycardia and low blood pressure. It’s difficult to use an iPad or any device when you’re reclined or laid flat in bed. For so long I awkwardly tried to use my iPad in bed either trying to watch programs, videos, putting on an audiobook or podcast, typing emails or lists or blogging etc. Now I can put my iPad into the case mounted on the Flexzi stand and I can easily position it however I like depending on how I’m laid in bed and it’s just effortless. I can use my iPad as normal and it’s just made life so so so much more easy for me. Then when I don’t need my iPad on the stand I can take it out the case and put it in the case that doesn’t have the Velcro patch and use my iPad as normal, not on the stand such as if I want to take it to another room. I could even put a Velcro patch on a phone case and mount my phone onto this stand too. It’s totally revolutionised using my iPad from my bed.</p><p style="text-align: left;">As amazing as this product is and I’d still buy it I’d say the main downsides and possible barriers for some people being able to purchase this assistive device is the cost of the product even with VAT relief. For me it cost £80 which is a big chunk out of my PIP budget and I did have to save for it. Also the clamp is very big; I tried to clamp it on the other side so I wasn’t knocking myself on it but it really limited the movement range of the pink goosenecks so I would probably have to have bought the extensions so for not I’ve just put a small pillow to prevent unwanted knocks and injuries.</p><p style="text-align: left;">Despite the downsides I’d definitely say that the benefits that this product has brought me totally are worth it and it’s a product that I wish I’d gotten a long time ago.</p><p style="text-align: left;">I’d said for anyone who spends a lot of time in bed, or those who struggle to hold a devices this is the perfect product for you. With this Flexzi 3 you can clamp it to a bed rail, an over bed table, a wheelchair frame or table to name a few places. The Flexzi 3 holds the weight of devices such as iPads and other tablet devices and things like e-readers too.</p>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-69219968232795138222024-01-26T17:06:00.002+00:002024-01-30T00:54:53.466+00:00Book Review: “The Silence Between Us” by Alison Gervais<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDQyz13Y49ecdKDzstu8WMs1EbL1YNkI7qYvytVprwuFoJ1jKDj1wPNX494DEw5d8xMAhVL5ZVQtOPeLcFVw2qnJo4jz4N4JUlPCnrhYcmuuyibyweW3uiJ8WV-D26EvgQUMk3LH6vy8ZNjUuNZVeAOtAyxnCJNezfhpw3r8PxJcGwBEFr3MU1M2Cb7bpO/s500/IMG_0453.jpeg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="500" data-original-width="500" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDQyz13Y49ecdKDzstu8WMs1EbL1YNkI7qYvytVprwuFoJ1jKDj1wPNX494DEw5d8xMAhVL5ZVQtOPeLcFVw2qnJo4jz4N4JUlPCnrhYcmuuyibyweW3uiJ8WV-D26EvgQUMk3LH6vy8ZNjUuNZVeAOtAyxnCJNezfhpw3r8PxJcGwBEFr3MU1M2Cb7bpO/s320/IMG_0453.jpeg" width="320" /></a></div><p style="text-align: left;">Rating: ★★★★★ out of 5!</p><p style="text-align: left;">Young Adult fiction is one of my favourite book genres because I like how it touches on many different life topics and challenges including, friends, family, relationships, education, careers, health and disability, social issues, political issues and more.</p><p style="text-align: left;">One of my favourite things about this book was how the author made the main character Deaf and I’ve never read any book before with a Deaf character let alone a main character.</p><p style="text-align: left;">I read “The Silence Between Us” as an audiobook though I felt it would have been better to have read this book as sometimes I struggled to follow the reading out of finger spellings especially with my dyslexia. Shorter words I could get like “name M-A-Y-A” but when longer names and words like ‘collapsed lung’ was spelled out I gave up trying to work out what I was listening to and backtracking over trying to work out what was being spelled out.</p><p style="text-align: left;">The book storyline is about Maya who became Deaf and her, her mother and younger brother who has cystic fibrosis move across the US because of her mother’s job. Maya isn’t able to join another Deaf School as there isn’t one close by so for the first time since becoming Deaf she has to go to a hearing school with the support of an ASL translator.</p><p style="text-align: left;">Maya is paired with a buddy, Nina, to help her acclimatise to her new school who she becomes friends with. She also becomes friends with Beau who learns ASL to communicate with Maya. Nina also picks up ASL too. I like how both Nina and Beau learn Maya’s language to communicate with her. This comes in helpful as Beau’s ASL is more advanced and one night Maya has to rush her brother to hospital and the virtual translation system is broken so Beau comes and translates.</p><p style="text-align: left;">I like how the author brings in aspects of the d/Deaf community into the book as after all the main character is Deaf. Some of the things the book touches upon are difficulties getting employment because of the employers responsibility to provide a translator, challenges in education including the lack of educational translators. In the book it also explores the differing opinions in the d/Deaf community as to whether d/Deafness is a disability or not and around the subject of cochlea implants.</p><p style="text-align: left;">As well the author writes about other hearing students attitudes towards a Deaf person. Such as at the beginning Beau asked Maya why she signed if she could speak orally. There was also an incident where Maya’s lab partner forgot she was Deaf and an incident happened and he said that he didn’t want Maya as his lab partner anymore because she was Deaf. There was also another incident were Maya lip read her being called a ‘token disabled chick’ when some students were talking about prom dates.</p><p style="text-align: left;">As someone with a disability I could relate in my own way to a lot of the things brought up in the book. Such as lack of access and accessibility and accommodation for our needs including the lack of funding or political barriers to us gaining access such as barriers in education and employment like in this book. Then there’s ableist attitudes and ignorance that again is another barrier and people not thinking about what they’re saying or involving us [disabled people] in conversations especially when it’s about things that directly affect us. Or people wanting to step into our world like how Nina and Beau stepped into Maya’s Deaf world.</p><p style="text-align: left;">I like how at the end of the book the author showed that d/Deaf people can succeed in a hearing world; it’s just a bit more challenging and there’s a few more obstacles to overcome.</p><p style="text-align: left;">One good thing about reading the book as an audiobook was there was an interview with the author at the end who did a Q&A and explained why she wrote the book and she explained how she was hard of hearing herself and wanted that representation in a book when she was younger. She explained about the character Maya and Beau, the two main characters and their different personalities and who she related more to as well as talking about her own experiences and challenges being hard of hearing.</p><div><p></p></div>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-56929887794434259572024-01-19T14:55:00.009+00:002024-01-26T21:59:56.295+00:00Making a routine for yourself<p>Due to my M.E. I’m mostly housebound but to manage my symptoms I have to spend most of my day in bed. This can bed hard especially when it comes to the structure of my day as days can often all blend into one. However I’ve found that giving my day routine and finding lots of different activities and doing a variety of activities that I can do in bed helps to give me the structure and stability I need to support my wellbeing. - I will do another blog post when I can on different activities that I’ve found can be be done in bed.</p><p>My routine is something I’m still working on since I’ve moved into my own home as I lost the routine I had when I was living at my Dad’s because my life looks quite a bit different now and I also need more support from PAs/carers (plus with them being here especially on PA days I have less free time in my day for doing the things I want to do on my own.)</p><p>I’ve developed a rough routine which my pain psychologist suggested I do and she suggested I create a good day and a bad day routine so I can switch between the two. Some days I can start off with the good day routine and end up using the bad day routine if my health takes a turn.</p><p>See at the bottom of this post for more about routines as like can’t always be a solid routine and sometimes we have to give ourselves and our routine a bit of flexibility.</p><p><br /></p><h2 style="text-align: left;">Tips for creating a routine in bed</h2><div><ul style="text-align: left;"><li>Have a set morning routine. For me I wake up at 9am and give myself half an hour to wake up, take my morning meds and sit up. Then at 9.30am I have my morning routine to do so I’ll have a coffee, check my messages and emails etc. Or sometimes (usually - I need to get better at doing admin in the morning but I’m not a morning person) I’ll do a low-level activity to get me started.</li><li>Pace yourself throughout your day. <a href="http://www.agirlcallednaomi.com/2019/09/pacing-activity-management-and-rest.html" target="_blank">This is a useful blog post I wrote about pacing, activity management and rest with some different techniques.</a></li><li>Work out when is best for you to do certain activities especially <span style="color: #cc0000;">high energy activities </span>like getting washed and dressed. For some people this is in the morning for others this is in the evening. It also depends on if you can get out of bed and to the bathroom to wash and whether you have the support from carers or caregivers such as family to do these activities. Aids can also help make these activities easier such as shower chairs/stools or a bath lift. You might want to bath or shower every other day and wash at the sink in between or another great alternative I find for washing are <a href="https://www.freshwipes.co.uk/?gad_source=1&gclid=EAIaIQobChMI6qTi99TpgwMVIpFQBh3WogdAEAAYASAAEgLiTfD_BwE" target="_blank">Fresh Wipes</a> which are some really good wash wipes that I find really helpful. </li><li>I find with <span style="color: #cc0000;">high energy</span> and sometimes <span style="color: #e69138;">medium energy activities</span> it can be helpful to limit how many of these activities you do in a day. - For me I have one ‘main’ activity a day (on my good days) that I do in the early afternoon when I have the most energy, what I do depends on how I’m feeling that day.</li><li>After <span style="caret-color: rgb(255, 0, 0);"><span style="color: #cc0000;">high energy activities</span></span> and sometimes depending on what I’ve done for a <span style="caret-color: rgb(230, 145, 56); color: #e69138;">medium energy activity </span>I find it helpful to have periods of rest in my routine, usually for 30-60 minutes the latter especially after a high energy activity so my body and mind can stop and pause for a bit. I never regain energy but resting just helps my body to stop so it’s not on the go all the time. </li><li><span style="color: #674ea7;">Rest</span> is different for everyone, for me I like to shut down and just lay and listen to mindfulness meditations and soundscapes. Other people prefer to do a restful activity. <a href="http://www.agirlcallednaomi.com/2022/10/rest.html" target="_blank">Here’s a blog post I wrote about rest</a>. I find it helpful to have several rest periods a day, especially on a bad day just to help especially with my chronic fatigue.</li><li>Alternatively after a <span style="caret-color: rgb(230, 145, 56); color: #e69138;">medium energy activities</span> you could put a <span style="color: #6aa84f;">low-level activity</span> into your routine.</li><li>Different people find different activities <span style="caret-color: rgb(255, 0, 0);"><span style="color: #cc0000;">high energy</span></span>, <span style="caret-color: rgb(230, 145, 56); color: #e69138;">medium energy</span> or <span style="caret-color: rgb(56, 118, 29);"><span style="color: #6aa84f;">low-level activity</span></span> and it also depends upon how you’re feeling that day and how much energy you have for activities. One day an activity may be <span style="caret-color: rgb(56, 118, 29);"><span style="color: #6aa84f;">low-level activity</span></span> another day it may be <span style="caret-color: rgb(230, 145, 56); color: #e69138;">medium energy activity </span><span style="caret-color: rgb(230, 145, 56);">or vice versa.</span></li><li>With <span style="caret-color: rgb(255, 0, 0);"><span style="color: #cc0000;">high energy</span></span> and <span style="caret-color: rgb(230, 145, 56); color: #e69138;">medium energy activities</span> work out your activity limit. This is different for everyone and also depends on the activities and how you’re feeling that day. Usually for me with a <span style="caret-color: rgb(230, 145, 56); color: #e69138;">medium energy activity</span> I can manage 20-30 minutes and I’d usually need a rest afterwards so I build this into my routine. It’s usually a case of trial-and error to work out your activity limit. With <span style="caret-color: rgb(56, 118, 29);"><span style="color: #6aa84f;">low-level activities</span></span> I still have to remember not to overdo it and burn out so in my routine I usually schedule 30-60 minutes for a low-level activity. I find it helpful to put a timer on to ensure I don’t overdo it and go over my activity limit or I take regular breaks.</li><li>Don’t forget to put meals and snacks into your routine too!</li><li>It’s also good to have a set time to wind down for bed. Have a snack and a hot milky drink, do an activity that doesn’t involve screens such as reading, listening to an audiobook or podcasts, activity books etc. Then go to sleep once you’re feeling tired and ready for sleep.</li></ul><p style="text-align: left;">Making your bedroom environment different between night and day can help with sleep as it can help your body feel like it’s in two different places even though you’re still in bed. This was a tip I was recently given during a sleep session for people with chronic pain.</p><p style="text-align: left;">Also from this session I got told that if you are able to try to get some daylight into your room during the day that will also help with sleep at night - I do know how hard this can be for those with light sensitivity and it’s something I’m personally trying working on and it’s tough going.</p><p style="text-align: left;"></p><ul style="text-align: left;"><li>If possible have a set daily routine so you’re roughly doing the same thing each day (if possible) - this helps to give your mind and body some structure.</li><li>What I do is I have my daily routine in my bullet journal, but life changes like my agency care is at different times each day so I have my routine on my iCal so I can change it as well as colour code it.</li><li>Another great alternative that I also have a use is the Stickman Communications pacing magnet set so I can create my day on a magnetic wipe board with different coloured magnets that I can write on. This gives me more flexibility as I can change it for how my day ahead will look as well as changing it around during the day should I find my energy levels drop and I need more rest and lower-level activities. Also some days I’ll use a <span style="color: #6aa84f;">green</span> magnetic for a particular activity and other for the same activity I may use an <span style="color: #e69138;">orange</span> or even a <span style="color: #cc0000;">red</span> one.</li></ul><div><a href="https://stickmancommunications.co.uk/product/pacing-fridge-magnet-set/" target="_blank">Link to buying the pacing routine magnet set</a> - I personally have found buying fine liner coloured or if not just black wipe board pens great and glasses cleaning spray is great for cleaning wipe boards! You can easily buy a cheap wipe board from places like The Range, Amazon or Tesco and other similar places. (This magnet set does come with VAT exemption for those eligible.)<br /></div><p style="text-align: left;">This is my magnetic routine for today:</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhy6Gisea77lX_glWGEbxbf-y5MCxZVt4vH9VM3vaSLv1kIv96Hw5VnvOinmQO8yUnjWD-FeDrjQqp_5gxBiMjRN_jOyy9oRKbGO58JeYrRisexFgLSYhLRW_-FrdmV4tdcGycB8wosCPb6DbABsi6aP6ZzkRC6IOwPmrJjQt7guYdpWx5zfYiyONGbkR2K/s2566/IMG_6305.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1898" data-original-width="2566" height="474" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhy6Gisea77lX_glWGEbxbf-y5MCxZVt4vH9VM3vaSLv1kIv96Hw5VnvOinmQO8yUnjWD-FeDrjQqp_5gxBiMjRN_jOyy9oRKbGO58JeYrRisexFgLSYhLRW_-FrdmV4tdcGycB8wosCPb6DbABsi6aP6ZzkRC6IOwPmrJjQt7guYdpWx5zfYiyONGbkR2K/w640-h474/IMG_6305.jpeg" width="640" /></a></div></div>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-23842764169412149382024-01-18T10:41:00.002+00:002024-01-18T13:32:27.218+00:00What posts would you like to read?<p>I will be updating some of my old blog posts such as those on activities, pacing as well as new post ideas such as sleep, routine (especially when you spend a lot of time in bed), favourite bloggers, awareness events around chronic illness and disability and more. But what would you like to read? Are there any old posts you want me to revisit? Or new topics you want me to write about? Email me at <a href="mailto:hello@agirlcallednaomi.com" target="_blank">hello@agirlcallednaomi.com</a></p>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-13425033708435855862024-01-11T22:24:00.004+00:002024-01-18T10:36:54.530+00:00Massages on prescription<p>I’ve been getting regular massages now for over a year. I see a lovely lady called Hollie who specialises in complimentary therapies for people with health issues. Whenever I see Hollie no two treatments are ever the same because she tailors each treatment to how I’ve been around that time, such as if my lower back has been particularly painful, or my legs have been in spasm more or my circulation has been worse and so she’ll focus my treatment on those issues. Her treatment room is also a little more specialised especially the massage bed which is like a profiling massage bed, the head of the bed raises up and down as does the foot of the bed and the bed also raises in height so people can be made more comfortable when they’re having a massage or other treatment. Another thing I like when I’m having a massage is the fact that I don’t lay on my stomach, instead I lay on each of my sides hugging a pillow when Hollie massages my back and shoulders.</p><p>I personally feel that massages like the ones I get with Hollie and by people trained like Hollie should be more readily available and accessible such as on prescription because of the benefits massage can give to people, especially those with certain chronic health conditions that may have little other treatment options or conditions that may benefit from massage, just like you can get acupuncture through the NHS for certain health conditions.</p><p>The reason why I feel that some complementary therapies should be available are that I personally believe that care should be supplemented and that medication doesn’t work alone both for physical and mental illnesses. Other things have to be done alongside medication to treat a person’s illness for a positive holistic approach outcome and this in turn, through treating a person holistically or in a person centred way may reduce the patient’s reliance upon medication or may aid their care, recovery, or help to improve quality of life. Idealistically I feel the holistic approach would include the biopsychosocial model of care with things like complimentary therapies, allied healthcare services such as occupational therapy or physiotherapy, talking therapies and social prescribing alongside traditional medical practice care.</p><p>There are many complimentary therapies that can be beneficial and aid physical and/or emotional wellbeing such as massage, nail care, Indian head massage and reiki.</p><p><br /></p><h1 style="text-align: left;">About and the benefits of complimentary therapies:</h1><h3 style="text-align: left;">Personally these are the complimentary therapies I feel should be available to patients on something like a prescription for those with certain health conditions because of the physical and/or emotional benefits these therapies offer</h3><div><br /></div><h3 style="text-align: left;">Massage</h3><p>Massage relaxes the muscles and soft tissue, it also increases the delivery of oxygen and blood to the area that is being treated as well as warming the area. Massage has been found to relieve pain, reduce stress, increase the sense of relaxation, reduce anxiety and generally aid a person’s wellness. In rehabilitation massage can also be used to assist with the repair of muscular injuries.</p><p>This is the main treatment I have with Hollie and I’ve seen a great deal of benefit physically over time. It also relaxes me reducing any emotional stress or anxiety I’ve been experiencing. Hollie works in a person centred way so she focuses on the issues I’ve been experiencing with my health at the time. I find that it does aide the relief of my pain and my circulation has been a lot better since Hollie has been working on improving that.</p><p><br /></p><h3 style="text-align: left;">Reiki</h3><p style="text-align: left;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhyphenhyphen1Hg1YB-OGvLWqv6AWsAT_eZ8Izr4C3-3r0acLeDYa-vb2I_mL3XCNuQQCrEbOJwt5y7D697Dz6o5oAcT1csr6nmhMdpEKhgFSXJKy2BhRkQS_J61e8N2-4pUHy8stlGMC-qiMfjSXwrq5r124raVIeDwk4nPTGBBVm90oB-IZZKCs_Ned-qQyJPZaRB/s959/IMG_0439.webp" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="640" data-original-width="959" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhyphenhyphen1Hg1YB-OGvLWqv6AWsAT_eZ8Izr4C3-3r0acLeDYa-vb2I_mL3XCNuQQCrEbOJwt5y7D697Dz6o5oAcT1csr6nmhMdpEKhgFSXJKy2BhRkQS_J61e8N2-4pUHy8stlGMC-qiMfjSXwrq5r124raVIeDwk4nPTGBBVm90oB-IZZKCs_Ned-qQyJPZaRB/s320/IMG_0439.webp" width="320" /></a></div>This is a non-touch though it can be hands on depending upon the needs of the client; it’s a non-invasive and non-manipulative treatment which may benefit some people over having a massage. Reiki is traditional Japanese natural healing therapy that tunes into the body’s energies and chakras from therapist to client. Reiki works on both emotional and physical healing.<p></p><p style="text-align: left;">I’ve had reiki in the past and found it deeply relaxing and I found the lack of touch was helpful as I felt the benefit of what the therapist was doing but by not touching my body reduced my body’s hypersensitivity to touch that I was experiencing at the time I had the treatment. It’s something I’d definitely try again.</p><p style="text-align: left;"><br /></p><h3 style="text-align: left;">Indian head massage </h3><p style="text-align: left;">This is an ancient treatment practiced for over a thousand years; it works on the Ayurvedic system of healing. The treatment works on the the muscles, tissue and joints of the head, face, neck and shoulders. This treatment is especially good for stress, tension, fatigue, insomnia, headaches, migraines and sinusitis.</p><p style="text-align: left;">When I have my full body massage Hollie also works on my head, neck and shoulders especially to relieve my ‘migraine fog’.</p><p style="text-align: left;"><br /></p><h3 style="text-align: left;">Nail care</h3><p style="text-align: left;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhelKq6vVPcJbEbDhHFDEUALGHAplSnk-viG2IKvGR5g18AePoCM-nHwo-ShoR1NNPOY4CUZkGUhqWOivX-cx1Dor-NMl-cp1o_BUwkGgblWgSHey8sUFLNH4O1AuyvX8Qa2kua8fiOqFOoZEKUTubFMc4QjUKpocITIPwTrODKtvLVNtpPGo7U6Te-AR2S/s400/IMG_0441.jpeg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="400" data-original-width="400" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhelKq6vVPcJbEbDhHFDEUALGHAplSnk-viG2IKvGR5g18AePoCM-nHwo-ShoR1NNPOY4CUZkGUhqWOivX-cx1Dor-NMl-cp1o_BUwkGgblWgSHey8sUFLNH4O1AuyvX8Qa2kua8fiOqFOoZEKUTubFMc4QjUKpocITIPwTrODKtvLVNtpPGo7U6Te-AR2S/w200-h200/IMG_0441.jpeg" width="200" /></a></div>Certain illnesses or treatments for some illnesses can affect a person’s hands, feet and nails. Complimentary therapies to treat a person’s hands or feet including their nails can be beneficial cutting, filing and performing cuticle work on the nails as well as massaging the hands and arms or feet and legs can help with symptoms as well as aiding relaxation and helping clients to feel clean, refreshed, hydrated and soothed.<p></p><p style="text-align: left;">I think that this nail care complimentary therapy should be offered alongside allied healthcare such as podiatry as well as hand therapy, diabetes, oncology and neurology clinics etc.</p><p style="text-align: left;"><br /></p><h2 style="text-align: left;">Resources </h2><p style="text-align: left;"><a href="https://www.cnhc.org.uk/#gsc.tab=0" target="_blank">Complimentary and Natural Healthcare Council</a> - you can find a therapist here</p><p style="text-align: left;"><a href="https://www.amethysttrust.co.uk/" target="_blank">Amethyst Trust</a></p>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-43362408447236413272024-01-07T13:23:00.001+00:002024-01-07T13:23:28.165+00:00The start to a new year<p>Something an old pen pal introduced me to the idea of was picking a word for the year ahead of you. I’ve chosen the word ‘enjoyment’ for 2024.</p><p>Something my pain psychologist introduced me to was ‘goals vs values’ so for example the goal of reading three chapters and feeling like you’ve failed if you get too tired and don’t read three chapters, or thinking about what you value and enjoy about reading and just value and enjoying reading.</p><p>I’ve decided not to set any goals this year like I’ve always done in previous years. Life can’t be predicted. I didn’t manage all my goals last year as I unexpectedly moved into my own home.</p><p>I’m just going to focus on what I value and enjoy. I enjoy blogging and YouTubing and I’ll just do it for enjoyment however many posts and videos I do and subscribers I get. I’ll enjoy reading however many books I manage to physically read; I’m just grateful I’m able to read books again, but audiobooks is still reading too. I value my faith. I also value my friendships and I made some wonderful friends last year who mean a lot to me.</p><p>I also enjoy having my own home and I feel lucky to have my own home at my age. I want to spend this year settling into my home more and enjoying it and making it more my own space and home.</p><p>One thing my therapist said to me recently is ‘you have limited energy, use it on things that are productive and helpful and positive’. My M.E. means I don’t have a lot of energy and I have to be careful with my limited amount of energy. Sometimes I don’t always spend it right; one thing is on social media. Sometimes I waste my energy on social media getting upset, feeling like I’m missing out and getting frustrated. So I also think that this year I’m going to spend less time on social media and focus on the people that matter like friends, pen pals and family and also myself.</p><p></p>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-55561868297960975752024-01-02T09:00:00.005+00:002024-01-02T09:00:00.135+00:006 years of blogging<p>Today marks 6 years since my first blog post way back in 2018. </p><p>Since then my blog has grown a lot over that time and evolved as I have. Back then my blog was named ‘Diary of a Zebra’ and had very much a diary format sharing my life and mostly what went on with my health. Nowadays however I’ve moved away from being defined by my chronic illnesses and disabilities; I’m still happy to say that I’m chronically ill or disabled but I don’t feel it necessary to chronicle things like ED admissions or write about hospital appointments. I still feel it’s important to write about my illnesses and to raise awareness of them but just in a different way; a way I feel is more healthy. Sometimes I’ve thought about taking down those old posts as they’re not ‘me’ anymore and not what I consider productive or healthy but at the same time my blog shows how I’ve changed over time. I also share less guest blog post too. Some of the guest posts like my old blog posts I’d consider unhealthy but I wanted to give people a space to have a voice and my blog was their platform to share their writings.</p><p>These days I more focus on a topic or awareness event and write about that. You may also notice that I post a lot less, this is mostly due to a decline in my health. I still love blogging and I want to continue writing when I’m able to to help raise awareness on topics I feel passionate about and to bring more awareness around the illnesses I have, something that is very much lacking especially when it comes to M.E. or indeed all of my current diagnoses.</p><p>I hope, health permitting, and to be more organised as well, to hopefully blog a little more this year than I did last year.</p><p>I feel grateful to the M.E. Champion Bloggers and being a member of that community as it gives my blog a bit of recognition as well as the occasional publications of my blogs in the M.E. Association’s membership magazine as well as the access to the group on Facebook (when I actually log on!).</p><p>So here is to another year of blogging ahead. </p><p>PS - I still do accept selective guest posts so if you would like to write something for my blog you can contact me on the menu at the top of homepage.</p>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-25668657806247058012023-12-08T14:47:00.003+00:002023-12-08T14:47:43.932+00:00Looking forward to my first Christmas <p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRfXq_6mK4q-CrsG3E1WUb2X41-PG5TkHLFK6MD-e1uOBt4UC9OzaYR4vMHBKzLO5K7y092sOJskAQow9ituMEAhsaQIcetI5mphcY7bPdUDrnfhLyuPn0ZCH7UJq_eK2KFaRS9_XBnGfuOHKGMqNln-v0sND1ckXBVFISzJ7sal054exL7SI8Jju72Veo/s4032/IMG_0457.jpeg" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRfXq_6mK4q-CrsG3E1WUb2X41-PG5TkHLFK6MD-e1uOBt4UC9OzaYR4vMHBKzLO5K7y092sOJskAQow9ituMEAhsaQIcetI5mphcY7bPdUDrnfhLyuPn0ZCH7UJq_eK2KFaRS9_XBnGfuOHKGMqNln-v0sND1ckXBVFISzJ7sal054exL7SI8Jju72Veo/s320/IMG_0457.jpeg" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">My dream tree I saw</td></tr></tbody></table>This year will be my first Christmas in my new home and I’m actually quite excited. I haven’t always been a Christmassy person but it’s growing upon me; I now even have Christmas bedding!<p></p><p>I’ve been dreaming of my dream tree for years which I saw a few years ago in a local garden centre and now I have my own home I can finally have the tree of my dreams!</p><p>Back in October Diane (my PA) and I went to Brigg Garden Centre as they have a massive Christmas collection. Yes October is a bit early to be thinking about Christmas but we went then before the madness began and it would be a calmer and quieter-ish day out, which it was. There wasn’t too many people which made it more manageable with my usual outing coping tools I use which made it a nice afternoon out. </p><p>They have different tree theme collections in little clusters around the Christmas World collection including my dream tree collection so I was totally in my element once I came upon that looking at different tree ornaments and home decorations. My theme is different shades of dusky pinks, white, iridescent and gold-ish colours; they all blend together beautifully. There were so much I could have put into my basket but I had to think about my bank balance as some of the baubles and tree ornaments had quite a high number on the price tag! Plus my tree will be something I will buy for and add to each year so I just got a selection of special baubles and tree ornaments I liked alongside some generic baubles that go with my theme. </p><p>I also managed to find a tree I liked, I wanted a pre-lit one; there wasn’t a lot of choice but I like what I chose and not having to mess around with fairy lights will be a real bonus.</p><p>Since going to Brigg I’ve collected some more baubles and tree ornaments.</p><p>Loving ballet I also associate Christmas with ballet as I always watch the ballet shown on TV on Christmas Day as well as my association with The Nutcracker so I’ve got a few ballet themed tree ornaments too. </p><p>I’ve also crocheted in the yarn colours of my tree theme some stars to hang on my tree. Then the same yarn colours I sent to my friend Becca and she’s kindly knitted me 10 mini stockings for my tree. Then also for my tree someone who I know has custom made me a tree decoration in my theme colours and the tree ornament says ‘first Christmas in my new home 2023’. Both that and Becca’s decorations are really special as they’re handmade and the new home decoration is almost a celebration of my first Christmas here. It’s a big milestone for me.</p><p>I’m now just worrying (a) about my tree fitting in my front room and (b) my tree looking too sparse this year, I just hope I’ve got enough decorations (and my theme stays on trend in future years too).</p><p>At the weekend Dad’s coming to put my tree up so Diane and I can decorate it on Monday. It was Diane who offered to help me decorate and I think looking at her own tree she’s very good at decorating for Christmas. I also enjoy decorating the Christmas tree too.</p><p>I’m going to have Christmas Eve day and Boxing Day here on my own here to rest. I’m going to wake up here on Christmas Day but at some point go to Dad’s. </p><p>It’ll be nice to have my own space this year so I can get away from sometimes how hectic the house can get at Dad’s, plus with my brother staying over that just got hectic written all over it!</p><p>So yes my first Christmas in my new home!</p>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-12016947400985872382023-11-25T00:25:00.001+00:002023-11-25T00:27:48.068+00:00How my new home is adapted for my needs<p>One of the reasons I moved into my own home was because I needed somewhere that would better meet my needs in terms of my chronic illnesses and disabilities.</p><p>Back at my Dad and stepmum’s there was many things I found inaccessible. Firstly and a big one one was the stairs; even bum shuffling up and down them was exhausting especially on my bad days. There was also nowhere to store my wheelchair in the house unless it was to get in the way. I also couldn’t have some of the adaptations I needed like grab rails, a second stair bannister or a key safe as well as things like a perching stool in the kitchen and my bath lift was a constant annoyance for my stepmum especially when we had people like my brother come and stay over.</p><h2 style="text-align: left;">How my new home has been adapted </h2><p style="text-align: left;">Ways in which my new home has been adapted or equipment I now have to make my life easier and to support and enable me to live independently.</p><div style="text-align: left;"><ul style="text-align: left;"><li>My front door has a thumb lock - instead of struggling with keys (even with my KeyWing adapters on) I just have a large knob to twist to lock and unlock the door - I didn’t have this originally but when the door lock broke and the locksmith came he decided to install a thumb lock for me to make locking the door from the inside easier for me.</li><li>Having an integrated kitchen in the front room I’ve come to love. Not having to to travel far around my bungalow is amazing and is so helpful (it’s also saved me having to buy an electric wheelchair like I thought I might have to have done). I only have my front room, bedroom then my bathroom to navigate (plus my garden). It just makes living on my own, especially with limited mobility and energy levels so much easier. I also now have a perching stool which I use in the kitchen area.</li><li>In the kitchen I chose to buy an induction hob oven. Though my PAs/carers do most of the cooking I still like to cook and bake sometimes with my PAs and I got an induction hob because it was the safest option. It cools down very quickly after use, the risk of burning myself is lower, it’s impossible for anyone to accidentally leave it on among other things. The hob and oven also if the timer is set on it it will switch off when the timer goes off too. It was more expensive but it’s definitely been value for money especially when it comes to safety both to people and my home. </li><li>In my bedroom I have my profiling bed with hybrid airflow mattress. My profiling bed is similar-ish to one you’d find in a hospital. My mattress is a hybrid between a static pressure relief mattress with and airflow mattress function on top.</li><li>To go with my bed I have an over bed table that part of it tilts so I’m able to do craft activities and write mail in bed. I waited to get this table until I moved into my new home.</li><li>In the bathroom I have my bath lift. Without this I wouldn’t be able to get a bath.</li><li>I also have the grab rails I need in the bathroom. There’s one near the toilet and another next to the bath so when I’m in the bath (I can’t tolerate showers) I can now use the grab rail to sit forward or change position etc independently.</li><li>Throughout my bungalow I have smart lighting and I have a HomePod in the front room and in my bedroom. I rarely use the main lights because of my light sensitivity so I prefer my lamps. On my phone or through voice commands I can control the lamps in my bungalow. For example I can turn them on and off, to dim or brighten them or set how warm or white the glow is. Under my craft desk the plug there is a smart plug so to save me climbing under the desk all the time so like with my lamps I can control the desk plug on an off.</li><li>To get into my garden I have a step and I have a grab rail there too so I have something to hold onto.</li><li>When the fire service came to assess me and my bungalow they weren’t too happy with the door between my front room and my bedroom. In the night if there ever was a fire I’d struggle to get out quickly - in the morning when I wake up it takes me at least 15 minutes if not longer to sit my bed up in slow increments and at times my symptoms can make me immobile. The door would have only given me protection of 10 minutes, if that. There isn’t any legal obligation for housing providers to make changes such as install fire doors but thankfully I having an amazing housing provider and they’ve installed a fully fledged fire door for me.</li><li>My rubbish and recycling bins are collected for me by the ‘bin men’ (I’m not sure what their official title is these days as it’s always changing) and then returned.</li></ul></div>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-48124832255867788012023-11-15T13:52:00.022+00:002023-12-07T15:57:19.897+00:00Settling into my new home<p>I’ve been living in my new home since April this year. I love having my own place to call home and the independence it brings and being able to do what I want; when I want (within reason of course!)</p><p>I wanted to move out for two reasons. The first was that it was my 30th birthday this year, back in June and I felt it was time to live on my own. I also needed to live somewhere that better met my needs in terms of my health.</p><p>It wasn’t easy finding a property as they all seemed to have or being given wet rooms whilst vacant and for me I needed a property with a bath due to my own needs. I looked at one property and I ticked all the boxes and it was spacious but the promised bathroom actually had a brand new wet room. That was the first property I viewed. I became number one for a number of properties but the vast majority of the time it turned out the listing was outdated and the bathroom was now a wet room or was having one installed or the area turned out to be less than ideal. I then bid for one property; I even called and begged my case for it but I was just told to call the council but then I dropped down to number four for the property so I thought no chance and moved on. </p><p>I believe everything happens for a reason as a while later with that property now out of my mind I got a call asking if I wanted to view it as three people had turned it down. It was my second property viewing; my housing support worker couldn’t make it but I had my PA with me. I was a little unsure as going for a property is a huge commitment but my PA (who I’m really close to as she’s been my PA for a few years) urged me to say yes to the property. I can honestly say it was the best decision I’ve ever made and I’ve never looked back. I believe that first property fell through because this property is a million times better for me.</p><p>My Dad and stepmum did all the painting and decorating to get it ready for me. I’ve truly put my mark on my home now. Every time people come round they comment how very ‘me’ it is! The front room is all colourful and miss-matched. My home is also a homage to IKEA!</p><p>In the front room I have a little seating area, a craft area then a kitchen space. The latter I was unsure of the first time I saw it but I’ve made it work for me. It’s small with not much cupboard space so I’ve added an extra unit for extra space. In regards to my mobility I’m only a few meters from place to place around my bungalow which helps me so so much. Then the other room is my bedroom which is big and spacious with an almost en-suite like bathroom. Then off from my bedroom as a real bonus I have my own garden! Dad’s helping do my garden up ready for next year which will be lovely so I’m looking forward to that.</p><p>As well as my bungalow being better for my mobility I’ve also been able to have some aids and adaptations that I was in need of such as grab rails in the bathroom and my perching stool and my step and grab rail to access the garden. It’s also better having access from both sides of my profiling bed for PAs/carers as well as nurses. I’ve also made my own accommodations such as smart lighting and smart plugs which I can control on my phone or through my HomePods with verbal commands. I’ve also been able to install safety features for my home both for myself but also in case of emergencies which put my mind at rest.</p><p>I’m much happier living here. It can be tough at times I won’t lie especially on my bad health days and it doesn’t help that my care situation isn’t sorted properly so that can be challenging at times.</p><p>Sometimes it’s the little things I like about living on my own like choosing my own laundry products and choosing what food I have in. I will say I’m not a fan of doing the laundry (thankfully the cleaning is left to my cleaner) but I like it when I have my home to myself and I like the peace (esp when my neighbours are out and therefore it’s quiet) and just pausing with a mug of coffee or crafting in bed or in my craft corner or curling up with a book or when we had nice weather swinging on my swing seat in the garden.</p><p>I’m really looking forward to my first Christmas in my new home. It’ll be nicer to have a quieter Christmas too without the hecticness that goes on at Dad’s. </p><p>I can see a future for myself here which is so lovely and I settle in more and more as time goes by.</p><p><a href="https://youtu.be/dFnvKK5NW7I?si=rRfmB9FtKzV60f_G" target="_blank">Tour of my new home</a> - video on my YouTube channel </p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc05hq-dm6VJSb2Ilaiy1R86u5kNLmTGNBHHQLKEr7OyJCYZFreO2Kt6F7otBhVqQaL-nDnc5APNok-Loy_rnejwiFLUXjoFo-uzZtGvCPtNFHhxw1k41_yUSKTad4UOuCw3soLJ2i7WWJhydhhn6uzHDNWFeIQiBWbQEpeQbIIDaEkYpN6cFsW5ski1KB/s2731/IMG_5495.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1536" data-original-width="2731" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc05hq-dm6VJSb2Ilaiy1R86u5kNLmTGNBHHQLKEr7OyJCYZFreO2Kt6F7otBhVqQaL-nDnc5APNok-Loy_rnejwiFLUXjoFo-uzZtGvCPtNFHhxw1k41_yUSKTad4UOuCw3soLJ2i7WWJhydhhn6uzHDNWFeIQiBWbQEpeQbIIDaEkYpN6cFsW5ski1KB/w400-h225/IMG_5495.jpeg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">My front<br /><br /></td></tr></tbody></table>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-34455714306542508922023-11-12T14:15:00.006+00:002024-01-30T00:55:19.967+00:00Book review: “My Beautiful Struggle” by Jordan Bone<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPhyphenhyphenlCM8hhMLgyVZugQEtWFKsajHfAmepbkyk6rJv5jCEK0HJGT29pkUyJ3Kfu10n-mNCz2gzITwsjiAynH8uAY59h67mHHp8eNfsLnfifTnPH6WbP0aEU47NzWZaMrZh0yuTUF5t7HTi3mc8GvKL5ZWPatdrcsWVxDLMTbN4NlU3QMNPd6W_BR72G84zI/s960/IMG_0454.jpeg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="960" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPhyphenhyphenlCM8hhMLgyVZugQEtWFKsajHfAmepbkyk6rJv5jCEK0HJGT29pkUyJ3Kfu10n-mNCz2gzITwsjiAynH8uAY59h67mHHp8eNfsLnfifTnPH6WbP0aEU47NzWZaMrZh0yuTUF5t7HTi3mc8GvKL5ZWPatdrcsWVxDLMTbN4NlU3QMNPd6W_BR72G84zI/s320/IMG_0454.jpeg" width="320" /></a></div>Rating: ★★★★☆<p></p><p>At 15 Jordan was in a car accident that left her a quadriplegic. When Jordan first had her accident it was unknown if she would ever be able to move completely and would be laid in bed with her head in a halo keeping her head, neck and the top of her spine still. After an uncertain but successful lifesaving surgery to stabilise her neck fracture and lots of rehabilitation she began her new life. Thanks to the surgery she regained movement in her arms, some movement in her wrists but her hands remained clenched shut with the only limited use of her thumbs.</p><p>Jordan was determined to relearn how to relearn how to apply makeup and this became part of her rehabilitation. Let’s just say she’s totally nailed it when it comes to makeup. Yes she has to apply makeup a bit differently using her mouth to aid her hands but her makeup looks on her tutorials on her YouTube channel are AMAZING!</p><p>Each chapter of her book is named after a makeup product or look and Jordan has really cleverly woven in the theme of what she writes about in that chapter with its relation to the makeup product or look. </p><p>What I liked about this book is that Jordan touches upon her accident and its lasting impact but she doesn’t overly focus on it. The book isn’t about her disability but it’s about her life, yes her injury plays a part but she also writes about her life in general and how her disability hasn’t stopped her from becoming successful through her YouTube channel and then onto collaborating with big brands such as being whisked off all expenses paid to NYC by the brand Urban Decay! Jordan has worked hard disability aside to become a successful young woman and her determination to be successful. To not let her disability beat or define her shines throughout her book.</p><p>In the book she also writes about the close relationship she has with her family and her boyfriend. It’s also clear that family means a lot to her. She even has her own purpose built home in her family’s back garden.</p><p>Sometimes she is asked about her disability such as about her hands in her makeup tutorials on YouTube as she edits out how she really does her makeup and just instead focuses on the look she’s filming. Jordan does touch upon the affects of her disability in the book such as needing carers when she travels to events and how her PAs do her hair for her as this isn’t something she’s able to herself. I could totally relate to Jordan on the the importance of having PAs for important care tasks but how it’s also wonderful to have carers who are also good at styling hair too!</p><p>It’s such a wonderful and uplifting book with many motivational passages written by Jordan that really clicked with me. It’s definitely not a ‘woe is me’ book about disability like some similar books to this that I’ve read. Jordan truly has embraced life to the fullest and has come out the other side going onwards and upwards there is no stopping her and I’m sure this book isn’t the end of her story.</p><p>One of the other added extras that I loved at the end of the book was Jordan’s beauty tips for skincare and makeup with tips and product recommendations. It’s definitely inspired me to get more adventurous with makeup and try out new looks and products and techniques.</p><p>I’d highly recommend checking out <a href="https://www.youtube.com/@JordanBone89" target="_blank">her YouTube channel</a> and here’s a <a href="https://www.waterstones.com/book/my-beautiful-struggle/jordan-bone/9781409171522" target="_blank">link to buying her book</a> - it’s also available on Kindle.</p><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="285" src="https://www.youtube.com/embed/MMkILprbsK4" width="344" youtube-src-id="MMkILprbsK4"></iframe> <iframe allowfullscreen="" class="BLOG_video_class" height="284" src="https://www.youtube.com/embed/B2_S76mebB8" width="340" youtube-src-id="B2_S76mebB8"></iframe><div class="separator" style="clear: both; text-align: center;"><br /></div><br /></div>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-88108092806755384792023-11-03T15:43:00.002+00:002023-11-03T15:43:43.795+00:00Discovering iris folding<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghQijVV29S_wdkR9rC9HRIexDNIUZHJtNTscq0NIfrjL-2tHrd7Rg8fB96gULxkfLmPl_u-YS4mqz20TeaikKlhloM0nt0H540BCAHZARRO3az9VqlOKm3-xYmfnDIhhnNw42n7SdUFbNlrkT71x7hNGlzwHP2lQa5rq1szFpzkzjcHGcycgO82lh3rlhN/s2011/IMG_5735.jpeg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2011" data-original-width="1670" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghQijVV29S_wdkR9rC9HRIexDNIUZHJtNTscq0NIfrjL-2tHrd7Rg8fB96gULxkfLmPl_u-YS4mqz20TeaikKlhloM0nt0H540BCAHZARRO3az9VqlOKm3-xYmfnDIhhnNw42n7SdUFbNlrkT71x7hNGlzwHP2lQa5rq1szFpzkzjcHGcycgO82lh3rlhN/s320/IMG_5735.jpeg" width="266" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">An iris folded card made by myself</td></tr></tbody></table><p style="text-align: left;">I’ve recently discovered iris folding and I’ve fallen in love with this crafty activity. What’s great about it is that it is very easy and simple to do and it doesn’t require much energy.</p><p style="text-align: left;">I’m always on the lookout for low level activities and iris folding definitely is one. Another fantastic thing about this activity is that I can easily sit in bed and do it at my over bed table. I can also pause part way through as long as I don’t disturb my project on the template. I’m always looking for activities I can do in bed as I spend a lot of time here (like now) as I’m often limited with how long I can sit at my craft desk or in a chair for due to my different symptoms, especially relating to my M.E.</p><p style="text-align: left;">I got into iris folding when I came across the Instagram account <a href="https://www.instagram.com/prettyinpaperbyb/" target="_blank">@prettyinpaperbyb</a> and then my friend and pen pal Laura sent me an iris folded card with my initial ‘N’. A little while later I decided to by a beginners kit from @prettyinpaperbyb and after making the two cards I had fallen in love with iris folding. It was was so simple and easy to do and the instructions were easy to follow (when you actually follow them - I forgot on the second card and had to restart. I thought I’d got the hang of it but looking at the end result I realised I’d gone totally wrong!) Soon after that I bought the deluxe beginners kit (which I’d highly recommended buying you literally get everything and more to start iris folding) and the rainbow card making kit too as I love rainbows. </p><p style="text-align: left;">So much thought goes into these kits in terms of what is included inside them, they truly are so lovely. Plus you’re supporting a small independent business. Also what I learnt from buying the kits is Bethan who is behind @prettyinpaperbyb has CFS, Chronic Fatigue Syndrome herself. As a child her grandmother taught her iris folding and when she became ill she picked up this craft again to occupy herself. Today she’s turned it into a small business selling different kits, digital patterns, and other products for iris folding. Bethan also posts videos on social media of her creating different iris folding designs as well as tutorials.</p><p style="text-align: left;">If you’re a crafty person and you’re looking for something new to try or you’re a crafty person with limited energy I’d highly recommend trying out iris folding. My advice is to start off with <a href="https://prettyinpaperbyb.com/collections/beginner-card-making-kits-mini-iris-folding-card-kits" target="_blank">beginners kit from Pretty in Paper by B</a> - there’s lots of kits to choose from ranging in different budgets and to create different projects too. I’m sure you will enjoy this creative activity as much as I now do.</p>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-21748125607337405382023-10-22T14:27:00.000+01:002024-01-11T22:34:57.401+00:00Decode M.E. <p>The Decode M.E. study is the world’s largest study into M.E. 25,000 DNA samples are being taken from people with M.E./CFS from around the UK with even more data from people being collected through questionnaires. The study has been expanded to now also include up to 5,000 DNA samples taken from those who have developed M.E./CFS after contracting the COVID-19 infection.</p><p>The Decode M.E. study is being led by Professor Chris Ponting who is part of the Medical Research Council, Human Genetics Unit based at the University of Edinburgh.</p><p>The aim of this research project is to find out if there are any genetic causes as to why people develop and become unwell with M.E. - Myalgic Encephalomyelitis also known as CFS - Chronic Fatigue Syndrome.</p><p>Funding has been secured for this largest ever study into M.E./CFS to see whether M.E. is partly genetic in nature and, if so, this will help researchers pinpoint what causes this illness. The study will also hopefully help scientists better understand M.E./CFS and ultimately help find treatments for the disease.</p><p>There is still time to participate in this study. The closing date for participation closes at 5pm on the 15th November. <a href="https://www.decodeme.org.uk/portal/" target="_blank">Click here to participate.</a></p><p>To find out more go to the <a href="https://www.decodeme.org.uk/" target="_blank">Decode M.E. website</a> and also check out their <a href="https://www.decodeme.org.uk/faqs/" target="_blank">FAQ’s</a>.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ1QSyJTUM0ECrDZ9o8Djljuywt24nPsE7Hh_Cxy_l2Um40V_UryTBRfoBwLOIO2Jwi2GH3JfU9myFMwHhk3q6HMdXDyhNvBVGXZF_avUiG0L6SqDJ1JKojRjQDDgkHfE26Yux4C4lxGLV1xY50LWixmhb1aa6-vnJrtu25klL_yqmM915HclP3rQ68Hfz/s1266/IMG_0245.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="453" data-original-width="1266" height="158" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ1QSyJTUM0ECrDZ9o8Djljuywt24nPsE7Hh_Cxy_l2Um40V_UryTBRfoBwLOIO2Jwi2GH3JfU9myFMwHhk3q6HMdXDyhNvBVGXZF_avUiG0L6SqDJ1JKojRjQDDgkHfE26Yux4C4lxGLV1xY50LWixmhb1aa6-vnJrtu25klL_yqmM915HclP3rQ68Hfz/w440-h158/IMG_0245.jpeg" width="440" /></a></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">In time I look forward to the results of this study and seeing what comes of it. Questions such as did I have a genetic predisposition to developing M.E. and if so what triggered the genetic response to me getting M.E.? Also if M.E. is genetic where did it come from as no one in my family as far as I’m aware has M.E./CFS. I also hope that the research helps to develop some effective and targeted treatments specifically for those with M.E./CFS and the research with also help healthcare professionals better understand M.E. and it will generate in time better access to treatment and care as currently it’s a bit of a postcode lottery. I’ll also be interested to see if the researchers come up with correlations to other illnesses some people like myself develop.</div>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-80959970089173276682023-10-17T16:09:00.004+01:002023-10-22T14:48:29.340+01:00Winter worries<p>As the weather is slowly getting colder there’s a big worry on my mind. I’m new to living alone and this will be my first winter paying bills. Many people are struggling with the cost of living in different ways, single parents, those on a low income, job seekers and those with disabilities.</p><blockquote style="border: medium; margin: 0px 0px 0px 40px; padding: 0px;"><p style="text-align: left;"><span style="font-family: inherit;">The charity Scope in recent 2023 finding found that “</span><span style="-webkit-text-size-adjust: auto; caret-color: rgb(68, 68, 68); font-family: inherit; font-size: inherit; font-style: inherit; font-variant-caps: inherit;"><span style="font-family: inherit;">On average, disabled households (with at least one disabled adult or child) need an additional £975 a month to have the same standard of living as non-disabled households.”</span> - <a href="https://www.scope.org.uk/campaigns/extra-costs/disability-price-tag-2023/" target="_blank">Scope, Disability Price Tag 2023</a></span></p></blockquote><p>Disabled people incur many extra costs, varying from person to person but many disabled people find that come the colder months they incur extra costs to stay warm because of their health.</p><p>For me the cold makes my symptoms worse. My joints are more painful, my muscles go into spasm more and just generally my pain levels increase and I feel a sense of malaise. It’s also important to have a warm home because I have autonomic issues so my body struggles to regulate its own temperature, in the summer I can’t cool down so well and in winter I can’t warm myself up so well. Obviously I dress warm in the colder months, I get my carers/PAs to make me hot water bottles and I microwave my warmies as well as snuggling under my heated blanket and taking other measures to stay warm that cost less. I’m so grateful for the cost of living payments as they will help a lot hopefully if/when I get them to put them on my gas and electric meter especially on my gas meter to heat my home. It also helps that this is a new build bungalow so it’s built to be warmer and more energy efficient.</p><p>It’s still a worry though over affording the heating bills over the next few months on top of all my other expenses and additional disability expenses. I know I’m not alone in my worries over the cost of living and also the additional disability price tag burden. It doesn’t leave much room to put money aside to save up.</p><p>My main worry is falling into debt over heating my home when I know that medically I need to have a warm home to stay well. I also worry about what will happen when the Cost of Living payment runs out and having to budget to put money on my meters.</p><p>At the moment I’m managing but it’s only going to get colder from now on, I just hope I’ll be okay.</p><p><br /></p>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-90265078724761337132023-09-30T16:19:00.000+01:002024-01-11T22:34:57.420+00:00Life with pain<p><span style="font-family: inherit;"><span style="-webkit-text-size-adjust: auto;">September is nearly over so before it ends I’ll quickly write a post for Pain Awareness Month.</span></span></p><p><span class="s1" style="-webkit-text-size-adjust: auto;"><span style="font-family: inherit;">The hashtag #LifeWithPain that is being used for this year’s awareness month sums up my life really well. I’ve lived with pain to one degree or another my whole life. I can’t remember what’s</span></span><span class="s1" style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody;"> </span><span class="s1" style="-webkit-text-size-adjust: auto;"><span style="font-family: inherit;">it’s like to not be in pain; being in pain is my normal.</span></span></p><p><span class="s1" style="-webkit-text-size-adjust: auto;"><span style="font-family: inherit;">When I was a child I often complained of being in pain, especially in my back and joints. I was diagnosed with hyper lordosis, a high acute curvature of the lower spine but the vast majority of the time Drs put my complaints of pain down to just being growing pains. Looking back now I can see that these were early signs of my Ehers-Danlos Syndrome.</span></span></p><p><span class="s1" style="-webkit-text-size-adjust: auto;"><span class="s1">I find it hard to score my pain when asked because my normal daily pain would score high and I just try my best to get on with it alongside the pain. So when I’m say in the Emergency Department and I’m asked to score my pain it’s hard as I score my pain differently to someone who doesn’t experience chronic high pain levels. Another thing I do is I always save my high pain score, especially 10 in case I ever experience worse pain in the future even if I feel like 10 at that time, just in case. What I find really annoying is my local hospital now use a 1, 2, or 3 pain score - how the heck do I give a score on that?! </span></span></p><p><span class="s1" style="-webkit-text-size-adjust: auto;"><span style="font-family: inherit;">When I talk to people about living with chronic pain and the pain</span></span><span class="s1" style="-webkit-text-size-adjust: auto; font-family: inherit;"> that I live with people ask me things like ‘how do you still manage to get out of bed’ or ‘how do you still manage to function’? Often it is hard to do both of those things but I have to live and I have to have some sort of life, I’ve just learnt to live alongside my chronic pain and find ways to have a life but sometimes it does affect my quality of life as well as my mental health.</span></p><p><span class="s1" style="-webkit-text-size-adjust: auto;"><span class="s1" style="font-family: inherit;">My pain varies and I do get my non-</span><span class="s1" style="font-family: inherit;">functioning days. Most days I just about manage to function due to a mixture of different medications, aids and the support and enablement from my PAs/carers. I’m also under pain specialists at UCLH which I’m really grateful about and they’ve helped me to learn to live with my pain and find ways to make it more manageable. It’s </span><span class="s1" style="font-family: inherit;"><span style="font-family: inherit;">still incredibly tough and I always flop at the end of the day with growing levels of pain.</span></span></span></p><p><span class="s1" style="-webkit-text-size-adjust: auto;"><span class="s1" style="font-family: inherit;">I experience a multitude of different types of pain. You name it; I feel it. From joint, nerve and musculoskeletal pain to chronic headaches and migraines I experience it. This is because all of my chronic illnesses come with chronic pain and with some illnesses the symptoms include different types of pain. The unpredictability is hard; not knowing how I will be one day to the next or how severe my pain will be as well as experiencing multiple types of pain at once.</span></span></p><p><span class="s1" style="-webkit-text-size-adjust: auto;"><span class="s1" style="font-family: inherit;"><span class="s1">Often medical professionals struggle to understand chronic pain especially as I have rare and/or misunderstood illnesses and</span><span class="s1"> this has led to many negative experiences in t</span><span class="s1">he past. There have been some good experiences but most medical professionals don’t experience chronic pain for themselves so how can they relate to patients who experience chronic pain and how can they empathise to give them the care they need in an understanding and compassionate way? I definitely think more training and education on chronic pain is needed for medical professionals. </span></span></span></p><p><span class="s1" style="-webkit-text-size-adjust: auto;">I believe that more professionals and decision makers who allocate care services need to better understand the needs of patients so we get the care we need both in hospital settings as well as at home in the community. I also think more research is needed into effective treatments and care guidelines needs to be improved.</span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;">Personally I don’t believe in medicine alone. I do a lot to supplement the medications I take for my pain. I find regular massages help, these are done by a lovely lady called Hollie who is trained in understanding chronic health conditions so the treatments so gives me are more targeted at my symptoms rather that my massages being a spa experience. I also find relaxation and mindfulness meditation helpful especially resting with soundscapes. Distraction is also a good tool as is getting enough sleep at night and staying hydrated. Also just listening to my body and what it’s telling me. Pacing and activity management is also key. I also enjoy a hot bath too. There are many things that I do daily to help me live with pain. </p>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-39030878519753490812023-09-10T16:39:00.007+01:002023-12-01T12:34:04.878+00:00Mobility aids can be pretty too<p style="text-align: left;">I think for a lot of younger people (and maybe some older people too) the standard NHS ‘greyeige’ for most things isn’t that attractive. However we still need mobility aids from crutches to walkers and wheelchairs to assist us with our mobility to help us get around and be mobile and have a sense of independence and freedom. This is really important especially when your mobility is restricted because of your chronic illness or disability. For some people having a nice looking mobility aid can help them to accept the use of a mobility aid therefore use it. I’ve seen it before on social media where people have accepted the use of mobility aids better when they are more ‘fashionable’ or accessorised or less clinical looking like NHS issued equipment. From choosing a coloured frames for wheelchairs, having a coloured or decorative walking stick or pair of crutches or accessorising mobility aids. You can even buy accessories for mobility aids or find ideas online to jazz up mobility aids. But as pretty as your mobility aid is it’s still serving a purpose, it’s assisting the person’s mobility.</p><p style="text-align: left;">Ever since I’ve used mobility aids I’ve had pretty looking ones. I’d love a wheelchair that would better meet my needs but also the perks of not having an NHS issued wheelchair is the customisation options. However I have accessorised my NHS wheelchair to represent ‘me’.</p><p style="text-align: left;">I think when I first started to use a walking stick having something that was pretty helped me come to terms with the fact that I was starting to struggle with my mobility and I needed something to assist me with my mobility. Now if I could afford it I’d have multiple pairs of crutches to go with my outfit of the day but sadly they’re too expensive for that as is a lot of disability related things (being disabled really is so expensive, but that’s a blog post for another day). </p><p style="text-align: left;">However not only are my crutches fashionable in terms of having a pretty design on them (designed by by me so they are utterly unique) they assist me with my mobility. Having pretty crutches just helps me express myself whilst at the same time having them to assist me with my mobility. I think I feel more comfortable and happier using them than I would a pair of standard issue NHS crutches. Though not fashionable (I’d love to see them in more colours) are my flexyfoot ferrules. Since getting them they’ve really helped give me more stability and grounding when walking.</p><p style="text-align: left;">Some of my wheelchair accessories are purely cosmetic like my Izzy wheel covers. Most recently I bought some RehaDesign push rim covers. Usually I’m reliant upon someone else pushing my chair for me because I don’t have the strength but these push rim covers are amazing! They give me the extra grip to be able to push myself a bit more myself independently from someone pushing me. They even work okay to a standard in wet and colder weather too. The push rim covers also help me navigate slopes and ramps too. They’ve really transformed my experience of being a wheelchair user. So not only do they add a pop of colour to my chair they’re giving me more independence and freedom which is what mobility aids are there to do; it’s just like with my crutches nicer to have something that’s pretty and expresses who I am.</p><p style="text-align: left;">Mobility aids don’t have to be drab ‘greyige’ they can be pretty and functional too doing the job they’re designed to do whilst at the same time expressing our different personalities, favourite colours or outfit choices. They also help give people the confidence to use mobility aids too, so mobility aids can be functional and pretty too.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOKZXAB8HUwpgqDreL2M6b4dzQ03levlYV7CsMmRtu2hJilHkcjdlXeBQ9q1hO86VM4pQw1fVYoBnIjsVwb1shl8oqJTCQ-lgHAu4f6yhzReIlwHgHNDxLqXk1agE-4p5iZPTaBy9TdAvS2IG7XWvFADoo_JnJ-Nm6NwRIOuaqsz_eZNsJvRiKhMhVeTK0/s1614/IMG_5037.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1614" data-original-width="1170" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOKZXAB8HUwpgqDreL2M6b4dzQ03levlYV7CsMmRtu2hJilHkcjdlXeBQ9q1hO86VM4pQw1fVYoBnIjsVwb1shl8oqJTCQ-lgHAu4f6yhzReIlwHgHNDxLqXk1agE-4p5iZPTaBy9TdAvS2IG7XWvFADoo_JnJ-Nm6NwRIOuaqsz_eZNsJvRiKhMhVeTK0/w290-h400/IMG_5037.jpeg" width="290" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgspbC8bkUKnh53NrfLccubtZE7t5FdTaAevw_b9Wip8UY0_z1xl9Wa_HgCsLhmpVf1a8T57x1HF16TM5QAui0cVc1mEImSe76aBxb7IVtLPP59a65MkQyeYNct6Yq7TII86k17hKdevYm0wcxKsPpom0W_brZ9BMZofV4fWxc0bjVXfaa5NPN2sYFrzB8G/s4032/IMG_5337.jpeg" style="margin-left: 1em; margin-right: 1em;"> <img border="0" data-original-height="4032" data-original-width="3024" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgspbC8bkUKnh53NrfLccubtZE7t5FdTaAevw_b9Wip8UY0_z1xl9Wa_HgCsLhmpVf1a8T57x1HF16TM5QAui0cVc1mEImSe76aBxb7IVtLPP59a65MkQyeYNct6Yq7TII86k17hKdevYm0wcxKsPpom0W_brZ9BMZofV4fWxc0bjVXfaa5NPN2sYFrzB8G/w300-h400/IMG_5337.jpeg" width="300" /></a></div><h2 style="text-align: left;">Mobility aid purchase links</h2><p style="text-align: left;"></p><ul style="text-align: left;"><li><a href="https://www.coolcrutches.com/" target="_blank">Cool Crutches</a></li><li><a href="https://www.flexyfoot.com/flexyfoot-shock-absorbing-ferrules" target="_blank">Flexyfoot Ferrules </a></li><li><a href="https://www.izzywheels.com/" target="_blank">Izzy Wheels</a><br /></li><li><a href="https://shop.disabilityhorizons.com/products/ultra-grip-wheelchair-push-rim-covers/" target="_blank">RehaDesign push rim covers</a></li></ul><p></p><div><p></p></div>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-49671083326990575522023-08-30T20:21:00.001+01:002023-08-30T20:21:01.470+01:00Fundraising update<p>So far this year I’ve managed to raise £64.50. </p><p>I’m quite proud of myself as I did take a two month break when I was moving.</p><p>I’ve now made a start on Christmas cards so I can pace myself making them as well as taking pre-orders. </p><p>I’m excited to see what my total raised is at the end of the year and donating that to my two chosen charities: Smile for M.E. and Action for M.E. I’ve already decided to continue selling cards and fundraising next year but for some different charities, (I haven’t decided which yet) but I love having an excuse to make cards and support charities close to me at the same time.</p><p><a href="http://www.agirlcallednaomi.com/p/cards-for-me.html" target="_blank">More about my card project</a><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAmTCdCej9-73MSK4qHX_l8l6dm_-QjbBwRhgVB7BVwqRNi8eb7AqEFqulWUrpSmJHBS5QvJmN6-ZwDbe_HTAPLnALvaR1ZSq6KgdKKGFmHx11j8MxfpDBFTvHqQ2nvx8W2JsUC4SZ03_uPjGNHl0XpnV-aCWS5GYag9HqyOWvGu-zPvDw1pzfkSkzeoJ4/s1800/IMG_0183.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1800" data-original-width="1800" height="470" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAmTCdCej9-73MSK4qHX_l8l6dm_-QjbBwRhgVB7BVwqRNi8eb7AqEFqulWUrpSmJHBS5QvJmN6-ZwDbe_HTAPLnALvaR1ZSq6KgdKKGFmHx11j8MxfpDBFTvHqQ2nvx8W2JsUC4SZ03_uPjGNHl0XpnV-aCWS5GYag9HqyOWvGu-zPvDw1pzfkSkzeoJ4/w470-h470/IMG_0183.jpeg" width="470" /></a></div><p>Some of the cards available to buy</p>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-23553717024227131762023-08-18T16:10:00.000+01:002023-08-18T16:10:30.969+01:00Framework housing support<p>Last year when I applied to the council for housing because I was identified as ‘in need of support’ I was allocated funding for housing support. My needs were put together and put out to different housing support organisations for them to decide if they could help me and then I was contacted back with the list of five organisations that were offering me support. Some housing organisations and charities mainly worked with those who were homeless or who had mental health or substance misuse issues and I didn’t fall into this category as someone with physical disabilities. I didn’t know anything about them other than the charity’s name but I chose to be supported by Framework.</p><p>My first housing support worker at Framework was Lotti who was the team leader, she was very flexible with the support she offered and we got on well. She helped me get set up with the council’s housing list and she put together the paperwork and evidence for what category I’d be put into for housing. Thankfully first time round I was put as top priority for housing and I feel this was based on the strength of Lotti’s work.</p><p>The initial work Lotti did for me was offer me 1:1 support, help me check the list of properties I was eligible to bid for, have a drive around properties I’d bid on and view properties with me among other things.</p><p>Lotti left Framework just as I got my bungalow but she was really happy for me as she knew the struggle I’d gone through to get a property with a bath as she liaised a lot on my behalf on this issue.</p><p>When I got my bungalow my Framework support worker went through the tenancy agreement with me so I understood what I was signing. </p><p>Honestly, without Framework I would have really struggled to know what to do to set up a new home. They helped me find and set up with utility companies, apply for my council tax on my behalf, know where I can get reductions because of my disability, apply for my bins to be collected, have the fire service assess me and my property, sort out issues with my TV license and lots more. Even just knowing that they are there on the end of the phone is helpful and means a lot, like the time I called Rick in tears because a lady from British Gas got me so upset I hung up and I just immediately called him after hanging the phone up.</p><p>Having M.E. means my energy is limited so having people like Lotti, Kim, Sarah and Rick and others at Framework speaking and acting on my behalf is so so helpful to my health as I don’t have the energy they have to make phone calls or write letters or fill out forms. I also have dyslexia and that combined with my brain fog I often struggle to understand the housing related paperwork I get sent. For example today I kept a letter from my water company that I didn’t understand to show to Rick when he came round so he could read it and explain it to me. Other times it’s simple support that helps like someone finding my bin collection rota so I know what bin is being collected on what week that saves me time and energy looking for this information myself that really helps.</p><p>I’ve been having lots of problems with British Gas. First it took a few attempts to switch over to them and then it took Rick a few attempts to switch me over to pay-as-you-go. Ricks also spent many hours on the phone to them for me with some successes like getting my money back that they took out my bank unnecessarily but most of the time we’ve (or more so Rick has) been been banging our/his head against the wall with the company. All I wanted was a plug in display box, the British Gas app displaying my meter reading and easy top up on my phone, instead I have non of this despite Rick’s best efforts to get me this. The only time I can get meter readings is when I have a visit from one of my support workers from Framework who go outside and physically check my meters for me. One time my gas was very low and could have fallen into debt, even today if Rick hadn’t checked my meters my electric meter could have easily fallen too low and it does get worrying not knowing my meter readings easily and accessibly. The whole situation is very stressful so I’m so grateful that I have the support of Framework and especially from Rick who is on the case who is now writing a complaint letter, something I’d really struggle to do if I was on my own. In fact this whole situation with my gas and electric I don’t know where I’d be if I didn’t have Rick and everyone else at Framework. </p><p>It’s also good to know that I have that continuing support from Framework and they can support me in whatever shape or form I need. It’s helped me settle into my home and I know Framework are there to help me live independently and thrive and that’s just what they are doing. I really can’t thank them for all their support so far and their continuing support. </p><span></span><p style="text-align: center;">▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️</p><p>To anyone who is thinking of getting their own property, is in the process of looking for a property or has just moved into a property and is struggling or feels they may benefit from housing support I’d strongly recommend contacting your local council’s housing department and asking for housing support.</p>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-41271474819053062032023-08-08T09:00:00.002+01:002024-01-11T22:34:57.408+00:00Severe M.E. Awareness Day 2023<p style="text-align: left;">*TW*</p><p style="text-align: left;">Living with Severe M.E. is incredibly difficult. 1 in 4 people with M.E. will be affected severely or very severely.</p><p style="text-align: left;">My days are full of unpredictability as I never know how my internal battery will last. Many people think that M.E. is “just about tiredness” but M.E. is so much more than that. M.E. affects everyone differently but for many of us, myself included it affects many parts of our body. M.E. affects my immune system, my cognitive function, my nervous system, my muscles, I experience different neurological symptoms, my autonomic system is affected and among other things my nutritional needs.</p><p style="text-align: left;">This years topic focus for Severe M.E. Awareness Day is on malnutrition in people with severe and very severe M.E. Though I’ve been fortunate to not need artificial nutrition such as from an NG tube because of my M.E. my M.E. has lead me to lose weight and be under a dietician and be prescribed supplement drinks because I struggle to eat enough. I’m also prescribed vitamins and other supplements. Often I find it hard to find the energy to eat and I lack an appetite and I can only eat small portions. Added to that my medication and symptoms such as pain and headaches/migraines make me feel nauseous making me feel less like eating even more, even though I know it’s important to have meals and snacks. Sometimes I’ve also needed my carers to cut my food up for me, and occasionally when I’m really not well feed me when I’ve been unable to do so myself (a task I find difficult but I’ve always been given as much dignity and choice as possible when I’ve needed help with eating) and also assistance with drinking, again difficult like with eating but always done with care. I also have allergies and intolerances which have increased since I became ill and I rely upon my PAs or carers to make my meals and often my drinks too. Ideally meals need to be cooked from scratch but with my current care situation this isn’t always possible meaning I don’t always get the nutrition I need. </p><p style="text-align: left;">Unfortunately there is a huge lack of misunderstanding around nutrition and malnutrition in people with severe and very severe M.E. When I was under the dietitian for my weight loss the dots weren’t put together between the difficulties I was having with eating enough nutrition, my weight loss and my M.E.; even I didn’t join the dots until I started to see others with M.E. also struggling with nutrition and with this years Severe M.E. Day campaign. Due to this gross lack of understanding people with M.E. are being poorly treated; passed off as having an eating disorder when they don’t; denied the care they need such as artificial nutrition and supplemental fluids because they are too unwell to eat or drink. It’s now time that healthcare professionals understand the difficulties people with severe and very severe M.E. have when it come to their nutrition before it’s too late. Also social workers need to give adequate time in a person’s care package for meal preparation, shopping trips and even time for carers to help a person eat and drink such as by assisting them to drink, cutting food up or feeding a person if needed. Assistance with eating and drinking requires extra time, like a lot of things for people with M.E. you can’t rush tasks, plus who wants to be fed quickly gobbling down food when you’re already struggling to eat in the first place?!</p>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-30640634723754461182023-08-03T20:44:00.096+01:002024-01-11T22:34:57.404+00:00Living alone with M.E. & other chronic illnesses<p>For part one on my home story which covers the struggles I went through and the many let downs I had before my new home finally was mine check out my blog post <a href="http://www.agirlcallednaomi.com/2023/04/welcome-to-my-new-home.html" target="_blank">‘Welcome to my new home!’</a></p><p>If you’re new to reading my blog I have several chronic illnesses: <a href="http://www.agirlcallednaomi.com/p/m_5.html" target="_blank">M.E.</a> - a neuroimmue illness, <a href="http://www.agirlcallednaomi.com/p/hsd.html" target="_blank">Ehlers-Danlos Syndrome</a> - a genetic connective tissue disorder, <a href="http://www.agirlcallednaomi.com/p/fnd_6.html" target="_blank">FND</a> - a neurological disorder, amongst other illnesses and other health complications. </p><p>My health especially having severe M.E. does make life living independently a HUGE challenge but I’m finding ways to make living on my own work. (I wouldn’t still be here if it wasn’t for my care team).</p><p>I thoroughly love living on my own despite all the challenges I’ve had; not just with my health but I’ve had a lot of support from lots of different people. The charity Framework have been amazing offering all sorts of housing related support and beyond. My Dad and stepmum for getting the bungalow ready to move into and. My Dad’s continued DIY skills and grass cutting. My Occasional Therapist (OT) for arranging the adaptations and providing equipment. Then come my PAs and carers, I honestly wouldn’t be living here without their support and enablement to have the life I have. </p><p>One of the main challenges is that thankfully I got the increase in my care package that I needed. - With my M.E. everything has to be paced so things take longer so I needed more hours than would normally be given.*</p><p>One big problem I’m having is that for a long time now I’ve been struggling to employ an additional PA and I thought that the additional hours the job was offering would be more encouraging however I’m still without an extra PA (or two). In place of that I’ve had to rely more heavily upon my care agency to cover my evening care and the 3 day weekend I don’t have a PA for. It’s not ideal but thankfully it’s a good agency and they try to give me the same few carers were possible. However the time I have with the agency isn’t the full amount of time I’d have with a PA (for example in an evening I currently only get 1/2 hour of care but with a PA I’d get 1 ½ hours) so I can be difficult some days especially on my bad days when things need to go at a slower pace, I have a seizure or I’m needing more support with additional tasks. </p><h2 style="text-align: left;">Tips for living alone</h2><div><ul style="text-align: left;"><li>Plan ahead, if you think you may need care or your care package increasing contact your local adult social care services and ask for an assessment way before you move in. This gives you extra time for an assessment to be done and for care to be organised.</li><li>Also ask adult social care to refer you to the OT Housing Team for an assessment so that when you do move an OT can assess you for what you need from a home and provide a housing letter detailing what your housing needs are. Then once you’re in your new home they can arrange and provide you with the aids and adaptations you need. They can provide you with advice on any other aids or equipment you may benefit from buy purchasing yourself such as kitchen aids for cooking. They will also work with your housing provider or landlord if needed. The OT can also arrange for any hospital equipment you have at your previous address to be moved to your new address.</li><li>When you start looking for a property consider asking for support from a housing charity who can can provide housing related support, such as helping you view properties, understand signing tenancies, organising your utilities, supporting you with any problems etc. The list really is endless with what they can do and from my personal experience their support is a lifeline.</li><li>When getting ready to move have a really good clear out. See it as a fresh start. I got rid of so much stuff!! Some just got thrown, I donated a lot to charity and a lot of my craft things I donated to the hospice for patients to use. I really did downsize!</li><li>The minute you think of moving out save save save!!! Moving into your own home is expensive from needing cutlery to furniture but just start with the essentials first. Thankfully I was fortunate that I already owned a lot of my own furniture. Charity shops are also great for second hand furniture and even white goods to get you started.</li><li>Take your time buying things. Online shopping is a good way to save energy especially if going to the shops isn’t possible for you. Also I planned the look of my new home on Pinterest; this was very fun but it also gave me ideas for my new home like the IKEA furniture combo that’s now my craft desk.</li><li>Pace out the moving process and gather all the help you can. If you don’t have many people you can call upon you can if affordable consider getting a handyman (or woman) - there are some out there that are DBS checked for added reassurance. You can either pace out the packing and then move in or this is what I did:</li><ul><li>I paced out and got support organising and going through and packing my belongings. When packing boxes I labelled with the contents and the location of where they’re going within my new property.</li><li>I slowly moved my belongings into my new property once it was carpeted and repainted.</li><li>I got a removal company to move my furniture and the remainder of my boxes.</li><li>Once my furniture was in I got help to start unpacking even before I officially moved in</li><li>On the day of moving in was the day my bedroom blinds was fitted and my hospital equipment was moved for me.</li><ul><li>Moving this way really helped by doing it in little stages. I was desperate to move in as soon as I could but pacing it out even though it still caused a major crash but it was very beneficial and I’m grateful for all the help and support I had.</li></ul></ul></ul></div><p style="text-align: left;">Things will be difficult initially, nearly three months in I’m still trying to figure things out and it’s definitely not been plain sailing. However for the ten years I’ve been chronically ill now this is the first time I’ve actually had something to celebrate and this is is something BIG to celebrate! I often look around my little bungalow in amazement that I’m still here. I’m happier and for my health my little bungalow is much much better for me. No more stairs or long distances and I have the grab rails I need and odd aids like my perching chair. I’m just a couple of meters from my bed to the bathroom which helps. Then the front room has an integrated kitchen area which at first I wasn’t sure about but it’s worked out amazingly as there’s less walking I’m just a short distance from my bed to the kitchen and when I can I try to sit in the front room or at my craft corner on my good days for a short while so I’m not in bed all day. I also feel I can be more myself like when I’m not feeling well I don’t have to hide it and I can do what I want when I want (within reason of course!) </p><div>I’m still yet to re-find a daily plan that works so I keep overdoing it and forgetting to time activities so I go over my activity limit and get payback with vengeance. I think my body is still trying to get over the big M.E. crash from moving and it’s just taking time for my body to resettle. This is hard as I can’t just stop to recover as there’s things to do. I’ve done some things to manage my M.E. and other illnesses better such as I now have a cleaner and I try and give my PAs and carers more house tasks giving me time to rest as well as pacing down when I’m on my own. I’m sure in time I’ll find my way and what works it’s just a case of trial and error as well as allowing my M.E. to settle down.</div>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-5074756029266669681.post-85236219795912295562023-05-29T14:58:00.005+01:002024-01-11T22:34:57.419+00:00M.E. Q&A - Questions from Instagram followers<h2 style="text-align: left;">What is the one thing M.E. has taught you?</h2><p style="text-align: left;">Who my real friends are. I’ve lost a particular friend who I thought was “my person” (something from one of my favourite shows Grey’s Anatomy) but it turned out they wasn’t the person/friend I thought they were. Now though I feel as though I’ve found ‘my tribe’. A group of amazing people, pen pals and friends who I feel are a positive influence within my life and on my social media. I feel I can turn to these people, talk to them, talk to them, turn to then with my questions or for advice, have a rant or a ramble or just talk about the things we have in common which has nothing to do with medical stuff. For example books, pen palling, crafting, pets, home decor and much more. These people also fill my Instagram with positive things (and funny animal videos!)</p><p style="text-align: left;">A lot of ‘my tribe’ also have chronic health problems/disabilities including M.E. but we don’t let our health define or beat us but it’s good that in the background there’s that understanding of illness and all that comes along with it.</p><p style="text-align: left;">M.E. has also taught me gratitude. I have a lot of thankfulness for everything in my life big and small. A letter or message from a friend, the enablement from a PA/carer to have a hot bath, drinking a nice cup of coffee, going outside in my wheelchair with my PA for a walk, a hug from my Dad, the fact I’m in my own home (!) these are just a few of many things I am grateful for.</p><p style="text-align: left;"><br /></p><h3 style="text-align: left;"><span style="color: #3d85c6; font-size: large;"></span></h3><h3><span style="color: #c66e7d; font-family: inherit; font-size: small;"><h2 style="text-align: left;">What is the hardest part with M.E.?</h2></span></h3><p style="text-align: left;">Feeling stuck with my life. I’ve been ill for ten years now and I’ve had little to celebrate. I see people around me my own age achieving things like my brother graduating from University, going a masters, getting a job getting promoted and so on and I’ve just gone nowhere at all.</p><p style="text-align: left;">However I now do have something HUGE to celebrate as I’ll soon be moving into my own home! I feel really proud of myself for this as it’s been a difficult journey and I know it will be challenging but there will be so many positives and many achievements.</p><p style="text-align: left;">Loneliness and isolation is also another hard part of having M.E. especially because my M.E. is severe I’m on the whole housebound so I can’t go out and socialise and virtual events are too tiring for me.</p><p style="text-align: left;"><br /></p><h2 style="text-align: left;">What symptoms do you experience with M.E.?</h2><p>A lot of people think that M.E. is just about feeling tired but it’s much much more than that. The symptoms that I experience vary in severity throughout the day and some symptoms affect me more seriously than others. I also have co-morbid symptoms annd other illnesses that have been brought on by my M.E.</p><p>My ‘main’ symptoms I experience include:</p><p>🩵 Hypersensitivity, especially to light, noise (and sometimes touch and smell too).</p><p>💙 PEM/PENE - Post Exertion Malaise or Post Exertion Neuroimmune Exhaustion - sometimes even the smallest amounts of activity can bring this symptom on. It’s a delayed reaction symptom for me it’ll come on the following day and you don’t know the extent of how hard it will hit you. Basically after exerting myself I’ll feel generally unwell; as though I have the flu with cold and flu-like symptoms and I will feel utterly exhausted and weak and my other M.E. symptoms will flare up too. It can take a few days or a few weeks or even months to recover.</p><p>🩵 Payback is a more instant reaction following doing any sort of activity so pacing and activity management is really important. I’ll experience a flare up of symptoms immediately after exerting myself as opposed to PEM/PENE which is a delayed reaction symptom. Sometimes even the smallest amount of exertion such as going to the bathroom can (a) feel like climbing a mountain and (b) it will cause me payback on a bad day.</p><p>💙 Pain is a big symptom for me. I feel different types of pain all the time - muscle pain including spasms, nerve pain including neuropathy and intense pins and needles and like electric shock sensations etc, joint pain as well as headache and migraine pain and abdominal pain and co-morbid gastrointestinal problems such as IBS and other issues. My pain is widespread throughout my whole body but my legs are the most painful part of my body when it come to my M.E. pain.</p><p>🩵 Persistently feeling fatigued and exhausted which worsens after doing activities including physical activities, cognitive activities or even something emotionally exertive and no matter how much I rest I never feel refreshed from my fatigue.</p><p>💙 Sleep difficulties especially for me insomnia - to me I think that when I’m struggling with insomnia it’s because my body doesn’t have enough energy to sleep. I also wake up feeling unrefreshed and often exhausted even when I’ve managed to have a good night.</p><p>🩵 I struggle with my cognitive function - this is often referred to as ‘brain fog’ - it involves this like difficulty thinking, planning and concentrating as well as multitasking, difficulties with speech and poor memory.</p><p>💙 Flu-like symptoms, poor immune system and generally feeling unwell.</p><p>🩵 Autonomic problems - this is problems to do with my body’s autonomic functions. So things like poor body temperature control, poor circulation, dizziness. Orthostatic intolerance is something I really struggle with a lot; I struggle to tolerate being upright for too long and so have to sit especially with my legs out and also sit/lay reclined most of the day to ease my symptoms and prevent me from passing out in the worst case scenario.</p><div><br /></div><div><h2 style="text-align: left;">Do you have more cognitive or physical energy?</h2><p>I would say that I’ve always had more cognitive energy but I still have to keep in check what I’m doing and time activities so I don’t overdo it on my activity management and burn out. </p><p><br /></p></div><h2 style="text-align: left;">Do you/are you grieving for your old life - how do you cope with this?</h2><p>For a long time I have grieved for my old life. I’m turning 30 next month and the plan I had for my life isn’t possible anymore which I still grieve for sometimes. I’ve also been academically driven I didn’t have any other life plans other than my education and the career path I’d planned out for my future, so when I became ill and had to leave University and then especially when I realised that returning to education wasn’t possible it was really hard. I really struggled to know where to place myself in the world and I felt stuck whilst the world and everyone else around me still where going places and it was hard especially when I saw people doing the things I wanted to be doing. I didn’t feel angry or envious as that’s not me, I just felt a sense of deep seated sadness and grief for the life I had lost and I felt like that for a long time.</p><p>What helped me cope was counselling and talking to a therapist; also friendships as well as just not focusing on the past or the future but just on the day in front of me and getting through that. I tried to celebrate the little wins because to me they were the big wins. I’ve also developed and grew my feelings of gratitude for all the things in my life big and small and that’s really helped me cope and realise what’s important in my life now and to look at what I have to be grateful for rather what isn’t there which is my pre-illness life.</p><p><br /></p><h2 style="text-align: left;">What helps you get through difficult times? What are your go-to coping techniques?</h2><p>Therapy has really helped me get through difficult things. Friendships are also really important to me especially the friendships I’ve made on Instagram and friends through pen palling - some of my friends also have M.E. and though we don’t focus on our M.E. it’s nice that there’s that understanding in the background.</p><h3 style="text-align: left;">My go-to coping techniques are:</h3><p>💙 Anything sensory such as my aromatherapy diffuser or kinetic sand etc</p><p>🩵 My noise cancelling headphones along with an audiobook </p><p>💙 Strawberry jelly and vanilla ice cream!</p><p>🩵 Letters to/from friends and pen pals</p><p>💙 Crafting especially colouring</p><p>🩵 Cuddling my heated Warmie zebra ‘Zoë’ (which I got as a gift from the charity ‘Smile for M.E.)</p><p>💙 Mindfulness or listening to soundscapes</p><p></p><p><br /></p><h2 style="text-align: left;">Are you bed bound or able to move around a little and make it to the sofa and things?</h2><p>I’m not bed bound but I spend most of my day on my bed as I can manage my M.E best being laid in best and I’m also most comfortable here.</p><p>I have a profiling bed and a hybrid airflow mattress so I can adjust my position easier and independently and it’s much better for managing my orthostatic intolerance. These were provided to me by my community Occupational Therapist and nurse.</p><p>I can move around like getting to the bathroom and through to my front room/kitchen area which is just a few steps away.</p><p>Since I’ve moved to my bungalow it’s been much much better for my mobility as there’s a way less walking required and no stairs to contend with so it’s made a massive difference for me. I really struggled to get around at my parents house and I was very restricted a lot of the time.</p><p>My ability to get around also depends on good/bad days. On my good days obviously my mobility is better but on my bad days I’m mostly restricted to my bed just so I can manage my symptoms and be safe and comfortable. I’ll only really move when there is someone here in case I fall as I can be very wobbly on my legs.</p><p><br /></p><h2 style="text-align: left;">Do you get muscle wastage/do you have exercises to do to stop that or help circulation from sitting lots?</h2><p>No thankfully I haven’t experienced muscle wastage so I don’t have exercises to prevent that from happening. I do some daily physiotherapy exercises to help keep me mobile as ‘if you don’t use it you lose it’ - the exercises are also to help with my other illnesses too. However I have to be careful not to exercise too much as with my M.E. I struggle with exercise intolerance and it can worsen my M.E. If I do too much physical activity of any kind and it causes payback and PEM even if I only do a tiny bit of physio so it’s a fine balance.</p><p>I once went through Graded Exercise Therapy (back when it was recommended as a treatment for M.E.) and it made my M.E. become much much worse. </p><blockquote style="border: medium; margin: 0px 0px 0px 40px; padding: 0px;"><p style="text-align: left;">💙 In a 2019 NICE survey 67% of people with M.E. who did GET became physically worse afterwards.</p></blockquote><p>In terms of circulation I have regular massages with a lady called Hollie who treats people with health conditions so her massages aren’t like spa treatments but more focus on my symptoms so in with my massages one of the things she works on helping my circulation.</p><p><br /></p><h3 style="text-align: left;">Your decision and process of moving to your own home?</h3><p>My decision to move house was based on two things. The first thing was the fact that I’m turning 30 this year (in a few weeks to be exact!) and I just felt it was time to get my own home despite all the challenges I have with my health. The other factor was that back at my Dad and stepmum’s the house just medically wasn’t suitable and didn’t meet my needs and I was struggling to live there and I couldn’t have the adaptations I needed because it wasn’t my home to give permission for certain adaptations etc. to be installed.</p><p>I was worried a lot about the idea of living alone because of my health but I just hoped I’d get the care and support I needed to enable me to live on my own. Thankfully I got the care hours I needed however I’m struggling to find additional PAs so I’m using a care agency at the moment.</p><p>The property I’m in now I was actually number 4 for so I didn’t think I had a chance and forgot about it and then a couple of months later I got a call asking if I wanted to view it. I was a little unsure at first because of the lack of storage space and the kitchen space but I’ve totally made it work for me and I’m now happily living here. Some days are really difficult I won’t lie and it’s not helped by the fact that I’m still yet to find additional PAs so my care situation isn’t ideal but at least for now I’m getting to use my care agency that I like as opposed to the not-so-great agencies adult social care use. It’s just a case of waiting and keeping my fingers crossed that a PA will come along asap as in the evening I’m meant to get 1 ½ hours but I can only financially get ½ and hour with my agency. (I pay a contribution towards my care but if I go over budget I have to pay the excess and my agency isn’t the cheapest.)</p><p>🩵 A myth is that a lot of people think that when you get your care through adult social care it’s free when actually you have a financial assessment to see how much you should pay towards your care.</p><p>Since moving here I’m slowly getting the adaptations I need to live independently. This ranges from the grab rail next the bath so I can sit myself forward on my own I’ve also got one by the back door, I’ve also had a key safe installed and I’m waiting for a step for the back door. I’m also waiting for my OT (Occupational Therapist) to bring me things like a perching stool and I’ve bought other adaptations myself.</p><p>I chose to get social housing as there was more security and the rent would be lower plus I’d be able to adapt the property. I couldn’t really imagine a private landlord wanting their tiles being drilled into to fit a grab rail. I’ve had support from a housing charity so I’ve had a housing support worker every step of the process. They set up my profile with the council to bid on properties. Medical evidence was submitted and I was instantly put in the highest band based on medical needs as my current property wasn’t suitable for me. Both me and my support worker was surprised I’d been instantly put in the highest band but it did make things easier as when I bid on properties I was more eligible for them. I was only able to bid on properties I was eligible for however after a while I made myself eligible to also bid on properties reserved for older people based on my medical needs so this did mean that there where more properties open to me that I was eligible to bid on.</p><p>Finding a new home wasn’t easy as most one bed properties where I live all had wet rooms. Because of my hypersensitivity with my M.E. showers make me feel like I’m in a super charged jet wash which is really physically painful plus I get cold easily in showers causing my muscles to go into spasm causing me more pain.</p><p>I had a total nightmare with the wet room situation (long story) but basically it felt like the assumption was that all elderly or disabled people needed or would need wet rooms so even when a property was advertised as having as a bath (perfect for me) whilst it was vacant a wet room would be installed or the advert would be out of date.</p><p>I hope that’s answered the question about the process of moving - I was a bit unsure how to answer that question such as how much detail to go into and give.</p>Unknownnoreply@blogger.com