A year in my home

A year ago today I will have been living on my own a whole year. It still feels surreal sometimes that this is my own home and I’m the only one that lives here. 

I’m also not quite sure how I’ve made it this far, I couldn’t have done it without my care team of PAs, carers and nurses and everyone else such as OTs and not forgetting my family especially my Dad. We all need a Dad, someone to do DIY for us or to sound off to or ask for Dad advice. Also on a supportive way my friends, even though they’ve not been here in person they’ve been there virtually on my phone. One friend in particular has really been a rock for me, just someone to talk to, vent to, share my day with and share funny animal videos with etc. we all just need people like that in our life and though she may not be here in person this friend has really kept me going too.

It hasn’t always been easy; it’s difficult living on my own especially on my bad days or on the odd days when my care hasn’t been there but I think I’ve done well and my Dad thinks so too. When I first moved out Dad thought I’d have a lot of ambulances coming out to me (I hate paramedics and hospitals) but I’ve actually only had two ambulances over the past year, one for a bad concussion which I got from falling during a seizure and another for and asthma attack and only the concussion landed me in the Emergency Department. Dad also thought that CareLink would be calling him a lot too to come and check on me but they have only called him once when I had my asthma attack so to my Dad I’m doing and coping much better than he expected.

Slowly this little bungalow is more becoming my home. When I first got the keys I did decorate it but over the past year I’ve changed more and more things to make this place mine. Dad’s renovating the back garden for me which I’m really excited about. I’ve linked in below a tour video of my home that I put up on my YouTube channel, since then there’s been several changes to my my home that I noticed when I watched back over the video like how my bathroom floor has been changed now so something much nicer, I now have a proper makeup mirror in my bedroom at my makeup desk (which has been reorganised) and I’ve added a yellow HomePod on a stand next to my toaster in the kitchen and also the top of my kallax unit in my bedroom has had a change around and a shelf has been put up above my craft desk and my letter rack has been moved to that shelf and I’ve finally changed the seat cover on my rocking poang chair too!

I still haven’t yet found my routine here. I more just go with the flow and try to listen to my body when it’s telling me it’s getting worn out. I had a strict routine when I lived with my Dad and stepmum but here I don’t really think I can have a strict routine as my evening care is always at different times and I have to wait the nurses to come at no fixed time some days etc. plus when I’m feeling up to it I have house jobs to do like tidying up or putting laundry on. These things do tire me out and it does make living on my own difficult. I try to delegate as many tasks as possible to my PAs and carers to save my limited energy levels and this does help and this is partly why they’re here to help me out and to enable my independence and to enable me to be able to live alone.

Despite the challenges and fatigue and everything else from living alone I love it! - “We can do what we want to again”: Moomintroll (The Conscientious Moomins) I love living by my own rules just simple things like being able to change my pjs as often as I want (as it’s me that has the full laundry basket), and being able to choose my own meals, or just being able to do my own thing and do what I want when I want (within reason and when my body permits me to do so as well) and having my own space too. I’m a person that likes solitude and quiet and my own space and being on my own so as much as I love my PAs and carers I do like my time alone (apart from when I’m not well and therefore I’m struggling without the additional support so then I am relieved to see my PAs/carers).

The layout of my little bungalow has also worked out perfectly for my needs. I’m only a few meters from anywhere and it actually works having the kitchen integrated in the front room as it’s less rooms and less walking for me. My housing association have also been great putting in adaptations like grab rails and a fire door and I’ve also got some extra things from my Occupational Therapist. All this means that I can live more independently (especially when I’m on my own) and tasks are made a bit easier for me or things/places are more accessible for me. I didn’t really have much of that at my Dad’s, I didn’t have the grab rails and the stairs were really difficult for me so it’s great to now be on one level in a bungalow. You can’t have everything though, I don’t think there’s a thing as the perfect property; there’s always that one thing and for me the one downside to living here is the parking.

It feels good to now have my assured tenancy; it feels more permanent and solid and like I have a future here and I do see a future for me here and it feels amazing.

Tour my new home

Crash

Crashing is what people in the M.E. community refer to when they experience a flare up of symptoms, usually quite significantly.

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.

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.

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.

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.

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.

Living with Severe M.E.

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  

Bring the outside world in

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. 

Personalise your bed 

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.

Use your imagination

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.

If I can tolerate it I listen to soundscapes and let them aid my imagination to take me to different places.

I find my imagination relaxes me as well as distracting me from the increase of my symptoms that I get on my bad days.

Lighting

Lighting is a great way to create a lovely space in your bedroom. I love fairy lights and my sensory lighting. I have a Mathmos Space Projector as well as a mushroom lamp that offers different light modes such as a choice of colour, brightness and a colour changing mode; this lamp comes with a handy remote.

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.

Get green fingered

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.

Dealing with medical supplies in your bedroom 

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.

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.

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.

Aids, equipment & gadgets

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. 

One of my favourite gadgets is my Flexzi iPad holder 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. 

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.

I also find my Dyson fan 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.

Audiobooks have been a lifeline for me

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.

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 Listening Books - 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.

Activities 

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.

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.

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.

Feeling pretty

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.

Friendships

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!

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.

Pen pals

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.

I also join in the Warrior Card Swap 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.

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.

6 tips for living with limited energy

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.

1. Learn to pace out your day

Pacing and activity management are going to be your best friend. The best way to visualise it is high level energy activities medium level activities and low level activities as well as rest. 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.

I use this colour code system on a day planner, or on my to-do list or I use the traffic light pacing list pad* to plan my day. 

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.

*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.

2. Do your most energy consuming activity at the time of day when you have the most energy 

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.

3. If you’re getting tired STOP and rest

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!

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.

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. 

4. Time your activities 

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.

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. 

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.

5. Use aids, equipment and gadgets etc.

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.

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.

6. Don’t be afraid to ask for help

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.

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.

‘I love your wheels’ - International Wheelchair Day

When I go out I aways smile when I hear ‘I love your wheels’. 

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.

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!) Here is a video on how I’ve accessorised my wheelchair.

Advice I’d give

To those who haven’t yet started to use a wheelchair 

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. 

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.

Getting a wheelchair

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.

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.

Adapting to first using a wheelchair 

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.

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.

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.

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 Gem at WheelsNoHeels 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.

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.

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.

Some of my recommended accessories

• FFORA - 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. Here is a blog post review on my FFORA products I also have this review video and this video 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
  
• Izzy Wheels - spoke covers for manual self-propelled wheelchairs 
  
• Bundle Bean - Wheelchair range - wheelchair cosies, organisers, spoke covers, ponchos etc. in a wide variety of designs 
  
• Push rim covers - these are the ones I have and would recommend and they come in different colours 
  
• MERU Flexzi phone mount - 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
  
• Pickepacke bags - 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 
  
• Mobility clips - these can convert your handbag to allow you to hang it on the back of your chair 

Product review: MERU Flexzi 3

I recently bought the MERU Flexzi 3 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. The Flexzi 3 holds weightier items such as iPads.

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.

It comes in either black, green or pink and you can buy an extension kit to lengthen the gooseneck. 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. 

As well as using it to mount an iPad other devices could also be attached to the Velcro pad if you purchase extra patches. You could attach e-readers, mobile phones, or you could buy the camera mount too as another use of the Flexzi 3.

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.

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.

The Flexzi 3 also has a part that can be taken off and slotted into the clamp to allow it to be attached to surfaces such as a tables, desk or tray.

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.

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.

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.

Book Review: “The Silence Between Us” by Alison Gervais

Rating: ★★★★★ out of 5!

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Making a routine for yourself

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.

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.)

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.

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.

Tips for creating a routine in bed

• 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.
• Pace yourself throughout your day. This is a useful blog post I wrote about pacing, activity management and rest with some different techniques.
• Work out when is best for you to do certain activities especially high energy activities 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 Fresh Wipes which are some really good wash wipes that I find really helpful. 
• I find with high energy and sometimes medium energy activities 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.
• After high energy activities and sometimes depending on what I’ve done for a medium energy activity 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. 
• Rest 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. Here’s a blog post I wrote about rest. I find it helpful to have several rest periods a day, especially on a bad day just to help especially with my chronic fatigue.
• Alternatively after a medium energy activities you could put a low-level activity into your routine.
• Different people find different activities high energy, medium energy or low-level activity 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 low-level activity another day it may be medium energy activity or vice versa.
• With high energy and medium energy activities 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 medium energy activity 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 low-level activities 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.
• Don’t forget to put meals and snacks into your routine too!
• 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.

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.

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.

• 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.
• 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.
• 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 green magnetic for a particular activity and other for the same activity I may use an orange or even a red one.

Link to buying the pacing routine magnet set - 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.)

This is my magnetic routine for today:

What posts would you like to read?

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 hello@agirlcallednaomi.com

Massages on prescription

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.

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.

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.

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.

About and the benefits of complimentary therapies:

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

Massage

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.

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.

Reiki

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.

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.

Indian head massage 

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.

When I have my full body massage Hollie also works on my head, neck and shoulders especially to relieve my ‘migraine fog’.

Nail care

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.

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.

Resources 

Complimentary and Natural Healthcare Council - you can find a therapist here

Amethyst Trust

The start to a new year

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.

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.

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.

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.

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.

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.

6 years of blogging

Today marks 6 years since my first blog post way back in 2018. 

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.

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.

I hope, health permitting, and to be more organised as well, to hopefully blog a little more this year than I did last year.

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!).

So here is to another year of blogging ahead. 

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.