One Second Every Day - August: Week 4 // 2019

Monday 19th August

Today has been a zonked kind of day. I really struggled = badly to get off to sleep due to pain; I didn't get off until past midnight.
This afternoon I spent a bit of time sat outside. Just before tea (evening meal) I was laid on the sofa nodding off. I'm now feeling a bit more awake after eating but I'm sat here now crying and my joint pain if flaring. I'm just hoping I don't have a repeat of last night. I'm just drinking my nighttime herbal tea and then I'll head to bed to do my new nighttime routine.

Tuesday 20th August

Still stuck in crash mode. (If you haven't read my other posts a crash in the M.E. community is when you go through a period of time where your symptoms are much worse than normal). I've been going through a crash for around a month now and with lots of essential appointments coming up I only know I'll be worse off. I've rearranged to a quieter time what appointments I can but others like my London appointments are unavoidable. Appointments, or activity of any kind leave me exhausted let alone whilst in the middle of a crash.
I had a seizure episode today. At the moment I'm just thankful that Dad is off work and I'm anxious about when he returns to work. (But I'm trying to not look too far ahead).
I had a sleep for a few hours this afternoon and I'm hoping I get off to sleep tonight okay. I feel my body needs a lay in but I'm worried about if I do about trying to wake up in time Thursday as I have an appointment in London then.

Wednesday 21st August

Struggled to get up this morning but I forced myself to as best I could in practise for tomorrow.
The mornings been slow going so far but there's a few things on my 'to do' list today including blogging, seeing if my watch strap is within warranty as its broken and calling UCLH to confirm tomorrow's appointment as I don't want a repeat of June an turn up to find my appointment had been cancelled. I've read had a call for the gastro dept at UCLH reminding me an getting me to confirm my appointment for next week.
I feel like I'm running on empty and I'm not looking forward to the early start tomorrow.
I've spent a long time today creating graphics on 'How to make your blog as accessible for all' for Instagram which I will then eventually type up to make a blog post.
Part of having cognitive problems and autism is you get very engrossed in activities and you think 10 minutes have passed and then you realise you've been sat there for several hours. Normally my watch beeping and vibrating at me reminds me not to do this and to get up, eat, drink etc but my watch strap broke this morning. I've had a lot of replacement straps over the time I've had my watch which has extra features like 12 alarms and rolling timers. When I called to see if my strap was still under warranty the lady could see I'd ordered quite  few straps over time and she said that shouldn't be happening so I managed to get a free replacement strap - bonus!

Managed to through my 'to do' list, yay! It slowly took me all day but it was achieved all the same. One of the things on my 'to do' list was call up UCLH about my test which I'm feeling extremely anxious about and they was very friendly and tried to put me at ease as much as possible.
Even though the day was spent on the sofa I used a lot of cognitive energy and I kinda went into living on adrenaline mode and forgot my pacing and resting as I was so engrossed in what I was doing on my laptop and ended up crashing for the rest of the evening.

Thursday 22nd August

Up early but I managed it and I just paced myself getting ready. I ensured everything was in my bag (I packed my bag yesterday) and I wrote a list of what needed to go in e.g. water bottle in bag, phone plugged into charger etc. I even had time to put on makeup and I was ready way before patient transport turned up so I had time to rest and drink my coffee.
Journey there was mostly uneventful apart from having a seizure and we had our usual stop off at Peterborough. I'm very much looking forward to them getting a Changing Places as the loo there is tiny and there is no room at all to manoeuvre my wheelchair around in. I dread to think how a large power chair, especially people who need tilt and recline chairs manage it as it hardly fits in my petite wheelchair.
Got to UCLH. I was very anxious about the test I was having about my bladder function, or malfunction in my case but the staff where lovely an understanding about my anxiety and they where very accommodating and they let me use the things I needed to help ground myself and we talked about Moomins as the clinical scientist lady and Dr both like Moomins too. I was in quite a bit of pain after.
Had a few seizures on the way home.
I'm now tucked up in bed with the onset of M.E. 'payback' feeling very run down and headachy.

Friday 23rd August

Quiet rest day today to recharge from yesterday's appointment so I've just been trying to take it easy.

Saturday 24th August

My new pens and mandala stencils arrived today! I've recently recovered drawing as a nice easy activity to do. It's also nice to get away from looking at a screen an do something that doesn't involve technology. It's also a nice distraction.
Still feeling quite crashed on top of my crash.
Dad and I also spent some time together. We played a game of Rumikub and then this evening we ate tea and watched a TV programme.

Sunday 25th August

Trying to rest as much as possible. I've done more drawing today but I haven't realised how exhausted I was so now I'm feeling blergh and I need to rest. I'd love to have a nap but it's 6.15pm so a bit late for sleeping as I don't want to struggle sleeping tonight. I also need to learn more an improve on my pacing and get back into my bedtime routine.
I'm also feeling extra blergh because my stepmum put her crackers in with mine in my free from shelf in the pantry so I ate them for lunch and I'm now feeling glutened blergh.
I'm now just watching one last program before I head off to bed get back into my bedtime routine.

Video Description

• Monday: Time laps video of my hot water dispenser filling up my cup
• Tuesday: Popping open he lid of my tube of vitamin tablets
• Wednesday: Working on my laptop on Canva a graphic design site
• Thursday: View out the window of the patient transport ambulance with a red London bus driving 
• Friday: Flop a black white and tan guinea pig laid on my lap being stroked
• Saturday: Colouring in the pen colour chart
• Sunday: Drawing a line using a ruler and pencil on black card

Tips for staying cool this summer

As we're set to have another heatwave here are some tips on coping with the heat.

1. Drink more fluids than normal
2. Put ice into your drinks
3. Keep a bottle of water/juice in the fridge or freezer
4. Keep sunny windows closed during the day, and open windows at night when the temperature has dropped
5. Keep blinds/curtains closed or partially closed
6. Avoid staying outside during peak times (11am - 3pm)
7. Check what medications you are taking as some can increase your sensitivity to sunlight. If you're unsure call your pharmacy.
8. Wear light and loose fitting clothes
9. Wear a hat when outdoors and apply high SPF sun cream and reapply this every 60-90 minutes
10. Wear UV sunglasses, if you wear prescription sunglasses get a UV filters made on them
11. Put a bowel of ice in front of an desktop air fan
12. Wet a funnel for your forehead or towel and put it around your necka
13. Have cooler showers/baths
14. Spend your day in cooler rooms, especially for sleeping/napping
15. Make you own lollies. You can cheaply buy lolly moulds and fill them with things like fresh fruit juice, smoothies or dilute juice.

How to make your blog and social media as accessible as possible

Accessibility on my blog has always been on my mind, trying to think about accessible aesthetics; making my blog look nice but having a good enough contrast between the text and the background and have easy read fonts. Early on in my blog I also installed a plug-in widget which I'll mention more about below. This also comes from needing to use accessible features myself. I use things like magnification, large cursors, text readout and bigger legible fonts, but I didn't want to make the font huge as I knew this wouldn't appeal to all readers, plus it would lead to a lot of scrolling which is why the plug-in widget is perfect. On my blog the font is fine, but users who do struggle with the vision can have the option of either use their own software or the plug-in widget.

I'm now becoming even more acutely aware of accessibility so I've been looking at moving forwards and improving on accessibility.

So, how can you make your blog and social media more accessible?

Font Size and Colour

Use a clear legible font such as ariel, comic sans, helvetica, verdana or something similar.

Don't make your font size too small.

Have a good clear contrast between your background colour and text colour. Dark fonts against light backgrounds work best.

Plug-in Accessibility Widgets

Add a plug-in accessibility widget. You can find ones for free such as User Way which is super easy to set up and install on your blog via a html code. These plug-in widgets offer features such as the ability to enlarge text, change the contrast, have a reading bar, read the page, highlight links and more.

Headings and Subheadings

Use headings. This helps people to navigate your website more easily and skip through to the parts they wish to read. It also makes your posts more organised.

Hyperlinks

Make hyperlinks clear. Rather than just typing "click here" type for example "check out my page on..." You can also make hyperlinks clearer by having them in a different colour to the main body of text. Plug-in accessibility widgets can also highlight links making them clearer to viewers.

Labelling Links and Buttons

By labelling links and buttons it makes it easier for those using screen reading software or magnification. By doing this readers don't have to press a button without knowing what it is, especially if is a link to another website.

Adding Closed Captions (CC)/Subtitles

Adding CC/subtiles to your videos will greatly increase your viewing numbers. Many people use CC/subtiles who aren't D/deaf or hard of hearing - I'm not but I often use subtitles as I find it helps me understand what I'm watching especially if I'm feeling brain fogged.

When adding CC/subtitles use clear, easy to read simple fonts on an accessible background such as black text on a white or yellow background.

Apps such as Apple Clips (free), Clipomatic (£4.99) and CutStory (unlock record for £1.99) which allows you to make videos which autogenerate subtitles to share on social media such as Instagram stories.

On YouTube you can also add CC/subtitles which also are autogenerated and adding CC to the video title will invite more viewers as the auto subtitles aren't always correct an you can get some odd sentences.

From experience I would say that on YouTube an apps hat autogenerate subtitles to double check and edit the the subtitles to ensure what is being spoken is correct in the subtitles. It also benefits viewers if you add CC which give extra information such as [♫] to indicate to the reader that music playing or you could write [acoustic music] or [background chatter]

Transcripts

If you can't get CC/subtitles an alternative to this is to write a transcript of the video. If you have an audio feature make a transcript and this allows D/deaf and hear of hearing readers of your blog to read what is being said. If their are sound affects add these too, such as [♫] to indicate to the reader that music playing or you could write [acoustic music] or [background chatter].

Audio

If you do want to go the extra mile in terms of accessibility as well as the text of you blog you could if you wish make a recording of what is written to give readers the option of reading or listening to your blog post. 

(This is something I am considering doing as I know which my dyslexia and brain fog mix I'd find listening to a blog post easier than reading but I'd need more energy and work out the logistics first.)

As an alternative to alt text/image descriptions you could make an audio description of the image.

Videos and Audio

Avoid using video and audio that starts automatically. This makes it easier to navigate your blog better. It also makes it more accessible for those who use screen reading software as they have to listen to their screen reader and the audio at the same time.

Alt Text (Alternative Text) and Image Descriptions

Alt text gives a audio description of images to those who use screen reading software.

To make your social media really accessible take a few moments to write alt text. Often, such as on Facebook the automatic alt text that is generated is very poor so you're best editing it yourself.

On your blog you can write an image description such as in the image's caption.

An example of alt text/image description could be:

A wooden worktop with a blue cup and saucer
of coffee next to a notebook and pen.

or...

Image description

A wooden worktop with a blue cup and saucer of coffee next to a notebook and pen.

Summary and Thanks

I hope these tips have helped give you insight and they will help you to make you blog or social media account more accessible, or just make you more aware off different accessibility needs.

Thank you to Holly at www.lifeofablindgirl.com and Deafie Blogger www.deafieblogger.com

#PlasticStrawBan with Jessica Kellgren-Fozard // What's Wrong with Reusable Straws [CC]

Jessica Kellgren-Fozard​ just sums up the plastic straw ban perfectly in how is affects some disabled people including myself. I couldn't make a better video if I tried.

As an essential plastic straw user who has seizures, involuntary movements, allergies, weak or spilted wrists and POTS (resulting in needing to lay down and drink a lot) along with a bunch of other stuff straws allow me to keep hydrated without wearing my drink.

Jessica speaking out on this issue is so important to me. Like Jessica I've received a lot of negativity taking about the straw ban and how it affects me, or receiving comments like "I'm disabled and I don't need straws" or the many suggestions telling me about x,y,z, alternatives which don't work for me and then getting tired and bored repeating myself and having to explain why x,y,z, aren't suitable. 

What I found so odd is recently I went to a well known coffee shop (I won't name who) but I put a fruit pot which was in a plastic tub and I got a plastic fort to eat with and my coffee came with a plastic lid, yet... I got a paper straw! Where is the sense in that. Oh and my straw fell to pieces in my drink, yuck! Plus there was no recycling bin in sight for all my plastic.

Thank you so so much Jessica!

(Oh and thank you Jessica for reminding me to change the straw I keep in my bag!)

PS: I do reuse my plastic straws until they are no longer usable and when I do I cut them horizontally and into little pieces.

World Photography Day 2019

Today is World Photography Day. They can be artistic or capture moments in time. They can show aspects of who we are and they can be a form of communication and we live in a world of imagery in an online age.

Here is a collage of photographs I've taken over time...

Image description (starting from the left corner going down in columns)

1. A photograph of myself with brown hair, glasses and a colourful woollen scarf
2. A red postbox with mail being held ready to be posted
3. A bottle of Diet Coke with the name 'Naomi' in red letters on the bottle
4. Two postcards, a pen, scissors and colourful tape
5. An entrance ticket with yellow flowers and in white text is reads 'Royal Botanical Garden, Kew' 
6. On a wooden floor a pair of pink satin ballet pointe shoes
7. A bright purple cornflower
8. A white, brown and tan guinea pig looking up at the camera
9. A green succulant plant inside a hedgehog shaped plant pot
10. A brown donkey with a white muzzle
11. A photograph of me an my dad. I have read hair and dark glasses, my Dad is wearing a striped top, sunglasses and a navy baseball cap
12. My giant notice board filled with a collection of different items. Around the notice board are coloured lights.
13. A tan and black small dog nestled in a duvet
14. The Hogwarts Express train which is a scarlet red and black steam engine. Leaning on the train is my Dad in a red jumper and jeans.
15. A zen garden with sand and green plants.

One Second Every Day - August: Week 3 // 2019

Monday 12th August

Still feeling crashed out. I managed to write one more letter to a pen pal ready to go off to the Post Office tomorrow. Because of my crash I've gotten behind with replying to my pen pals but they've all been really understanding and let me know not to worry and to take the time I need. I just have one more letter to reply to but I won't get it done for tomorrow. Once I've gotten my pen pal reply done I'm going to get back into PostCrossing as I haven't done any postcards for a while.

Tuesday 13th August

Had my carer today and had a nice shower and hair wash. A luxury for some people with disabilities like myself. I mentioned this to my carer and she said that before she started working as a carer she didn't think about taking a shower, but now working with people who struggle with basic things like showers she now thinks more about her ability to get a shower so easily etc.
Letters went off to the Post Office today. I feel better now that I'm slowly catching up with replies.
I'm still pretty crashed and my headache/migraine is still persisting and has done for a few weeks now.
This evening I decided to do a bit of PostCrossing and I've got some postcards done. It was an easier activity than writing a pen pal letter and it was nice to use my energy not laid in bed watching TV and even though it took a lot of energy from me I remembered to leave some spare energy to tidy up and doing it in the evening meant that tiring myself will hopefully mean I can sleep okay tonight.

Wednesday 14th August

Still feeling utterly crashed and people have said to me how tired I look. I'm literally so tired I feel ill. Thankfully I have nothing in my diary for the rest of the week so I can lay in and just rest and recover. I'm really not looking forward to next week and the week after which as super busy inc two appointments in London. If I could rearrange them I would but they're not appointments I can just reschedule like I've done with a few other appointments.
I've been spending more time in bed. Rather than watch TV on my laptop which takes more concentration than you think I spent some time writing postcards with the radio on which was nice and I remembered to leave some spare energy to tidy up.
I've just done a load of clearing out on my laptop and now I'm ready to get into my pj's and hope sleep comes soon.

Thursday 15th August

Had a nice lay in and a quiet comfy clothes day just resting and recharging on the sofa.
I really need to try and sort out my bedtime routine so around 8/8.30pm I headed up to bed, washed my face and got into my pj's then sat in bed and did a few word puzzles instead of watching seething on my laptop and then I put on an audiobook which I've been trying to get back into doing when nodding off.

Friday 16th August

I managed to get off to sleep okay and I sleep well. I had another lay in trying to get as much rest as possible.
I spent most of the day on my bed. My new pens and black paper arrived and I spent some time doodling and it was nice to not have a green in front of me.
At bedtime I went on ahead with my new routine that I'm trying to get into.

Saturday 17th August

Woke up; as usual it took a while from waking to getting out of bed. Made my way downstairs. Had my medication and breakfast. My stepmum then suggested I go back to bed which I did and my watch vibrating for 12pm woke me up. Still tired I decided to not go back to bed but I went downstairs.
Spent the afternoon resting, flicking between activities on my laptop. On reflection I spent far too long on my laptop doing stuff and I tired myself out. 
After tea I watched a programme on TV and was nodding off.
Then in perseverance of my new bedtime routine I headed up to bed.

Sunday 18th August

Had quite a long lay in this morning. I found getting off to sleep harder last night due to pain and my pain still isn't great now.
I'm trying to remind myself of celebrating the little victories, which are actually big victories: getting out of bed, getting dressed etc.
Today I'm going to aim to spend some time not in front of a screen.
So I did that. I sat outside for a while and replied to a letter and did some doodling.
I then completely crashed. I felt so tired and ill I wanted to cry but I was too tired to cry and because I was so exhausted I was in pain. I found an easy watching film and put that on and laid under a blanket.
After tea I finished off the programme I was watching and headed to bed but pain made it hard to get off to sleep but eventually I nodded off.

Video Description

• Monday: Feeding Flop a bit of beetroot leaf
• Tuesday: Sticking down an Air Mail sticker on a postcard
• Wednesday: A colourful pack of pens; I take out a purple pen
• Thursday: Video of a flickering cracking mini candle
• Friday: Working on a Criss Cross word puzzle
• Saturday: The screen on my laptop with text being highlighted in lilac
• Sunday: A piece of black card with the word 'hello' in colourful bright letters and around the text are colourful doodles and I am drawing

The plastic straw ban and how it affects me and other disabled people

Plastic straws are a bit of an essential for me. I use plastic straws as I have a lot of weakness in my wrists due to hypermobility and palsies (paralysis in my wrists used by problems with my nerves brought on may my FND) so lifting cups and tipping a cup to drink can be tricky. I also use lidded cups buace of my tremor and involuntary momnetnts, and just being a clumsy person, plus lidded cups are a lighter weight with again are easier for me to hold. Also one of the gadgets I use are 'Safe Sip' lids which you have to use straws in them (they're stretchy lids that go over cups to make them un-spillable). 

I've also found a lot of straw alternatives unsuitable - they fall apart, I injure myself on them, I'm allergic to them, they can't be used in hot drink, they're not 100% hygienic, they cut off when bent or can't be bent etc.

I have had a lot of backlash at times when I've brought up the subject of plastic straws online. People saying "Well I'm disabled and I don't need straws" or "get silicone straws" or "carry some straws around with you and other comments and having to justify myself gets rather tiresome.

Note please not at home our plastic strawd are used and washed to death, literally. We use them until they die, and to be environmentally friendly we do cut them up before binning them so that they don't cause harm to wildlife.

Another reason why I need opposable bendable plastic is that because of my disabilities I have to lay flat a lot of the time, I also need to drink more fluids than most people so laying flat and having the drink means that the only suitable straws for me is a bendy plastic straw that will stay in position.

The plastic straw ban has had a huge affect on me. First off, drinking out. What I really don't get is that I'm given a plastic lid on my cup, a plastic fork for my fruit with is in a plastic tub yet I'm given a paper straw for my coffee?! Where is the sense in that?! Apart from one place I'm now given a straw alternative; usually paper straws with a) will undoubtably fall apart in my drink, hot or cold or b) I will have an allergic reaction to the dye in the straw or c) it's not opposable making it hard to drink with when reclined. One place gave me a recycled biodegradable plastic straw, the problem with this straw was that it epically melted in my coffee and with it being a hard plastic rather than the soft plastic of a body straw every time I had an involuntary movement I jabbed the roof of my mouth (ouch), it also wasn't opposable which like the paper straw it made it hard to drink with when reclined.

I'm all for looking after the plant. In our house we recycle everything the local council say we can recycle and we moan about what could be recycled but what the local council don't.

Disabled people are getting a lot of backlash about their need for bendy plastic straws, and this usually comes from non-disabled people who don't understand our need for them and how they are an essential to be able to simply drink.

Plans to make bendy plastic straws available at places like pharmacies just make it harder for disabled people ostracising disabled people and making disabled people feel the bad person for using  plastic straws.. Instead, why not educate people and give people a choice. In supermarkets have paper straws next to the bendy plastic straws and in cafés have a handful of plastic straws so when a person asks if they could have one they can but for staff not to ask the disabled people to justify why they need the plastic straw over a paper straw. And this brings me onto another thought, under the Disability Discrimination Act and Equality Act which means that resonate adjustments must be made for disabled people, would providing plastic straws to disabled people be classed as a reasonable adjustment by law?

Recently in the new's people have been complaining that the paper straws in MacDonald's ruin their milkshakes, instead people should spare a thought for disabled people who have to put up wth paper straws ruining every drink they have.

I totally understand the world's view to try and be more eco-friendly but it should have been more thought out. Like when drinks are served in plastic cups or with plastic lids but I've never seen a recycling bin in a café. And going back to MacDonald's, they're new 'eco friendly paper straws' are not actually recyclable.

All-in-all just spare a thought to disable people who to them plastic straws are a necessity and not a choice.

 

One Second Every Day - August: Week 1 & 2 // 2019

🔋 Thursday 1st August

Had a free diary today so just took the opportunity to recharge my batteries.

🗒 Friday 2nd August

I only had one appointment today which was with my new advocate. It was mostly to let her know what my old advocate had been doing and the things I feel I need support with. Things went really well as initially I was a bit unsure as I'd been struggling to get hold of her for quite a while but I feel that now she's going to get on with stuff, see me when needed, be contactable and be there at any assessments, meetings or appointments. She's going to try an get me another care assessment so fingers crossed,

👩🏻‍💻 Saturday 3rd August

The day went fairly quietly. This evening I had a few seizures. I was in too much pain to get comfortable to sleep so I sat up in bed and watched a couple of episodes of Bones on Amazon Prime.
The past few days especially I've been really struggling with body image which I did an blog post about: "My Secret Struggle".

💊 Sunday 4th August

Woke up around 5am in pain which I'd kinda gotten out the cycle of so I'm hoping it's not starting up again. I watched some more Bones and managed to get a little bit of sleep before my alarm went off. 
I'm now I'm drinking my coffee and I'm now utterly exhausted and will probably have a nap at some point.

I'm now just settling down in bed feeling like utterly fed-up as for the second night in a row my pain is really bad an I'm exhausted and I just want to sleep and my mood is low because I know there is no end in sight to my pain and other symptoms. 

💤 Monday 5th August

M.E. and pain flare kinda day. I was up at 6am in pain; I hoped to get back to sleep but that didn't happen. Managed to nap during the day, well I couldn't help but end up falling asleep.

🚿 Tuesday 6th August

Still not feeling great but with the help of my carer having a proper all-out shower and hair wash made me feel much brighter and the warmth helped my pain. Still in a flare today. Had a lay in and had a laptop today bringing my blog's IG up to date. Need to get better at doing that.

💖 Wednesday 7th August

Today was a self-care kinda day. I just chilled out on the sofa and watched TV, I also finished off a letter to a pen pal and messaged my other pen pals letting them know that I've been struggling with my health and I will reply as soon as I can. Thankfully all where understanding.

🌳 Thursday 8th August

Dad and I went on a day out to Elsham Hall which is not too far from home and it's somewhere I've always wanted to go as every time we go out we pass the sign for it.
We had nice weather and the route round the lake and gardens was wheelchair friedlyish, though there was one part where I was worried I'd tip into the pond an another where I though I'd go into a bush.
It was a nice leisurely day and we enjoyed sitting in the courtyard with our coffee people watching.
We I got home I went for a nap feeling utterly exhausted, in a lot of pain and with a migraine brewing. I've only been downstairs to eat and that was difficult. As soon as I'd finished eating it was back upstairs to bed. 
I now have a raging migraine and feeling the payback for a day out. Thankfully I have nothing in my diary for the rest of the week other than an M.E. crash and  PEM (Post Exertion Malaise).
I just want to treasure though a nice day out with my Dad and making the most of having him off work for the summer holidays.

😪 Friday 9th August

Severe M.E. PEM (Post Exertion Malaise) today as a result of going out yesterday.
My cousin was up from London as she was going to a wedding so she popped round for a bit.
The evening was really difficult. I had a very long seizure episode and I managed my head when I fell as I don't have a warning about my seizures now. When I finally came round and was post-ictal (the altered state of consciousness you're in after a seizure) apparently I was screaming and normally I have no or difficulty with speech and I couldn't communicate that my hip had dislocated.
Finally I was able to stutter this when I'd come round a bit more and Dad gave me some morphine and then after a while topped me up with some co-codamol and he put cushions and blankets around me. Dad got me my headphones and my iPad so I could watch Bones to distract me and I laid on the floor for a few hours before Dad awkwardly helped me to bed.
I'm just thankful I wasn't home alone, if I had I would have needed to press my CareLink and have the paramedics out. This is just why we are desperately fighting for me to have some sort of care package.
I'm writing this in on Saturday and looking bad I feel upset, angry and frustrated as the situation was awful and I'm just desperate for a care package I'm so scared when I'm home alone and I daren't move incase I fall and I pass out so much and I have multiple seizures a day and I have no help and it feel like the people that are meant to care don't.

🛋 Saturday 10th August

Feeling upset today about last night and I've been in a lot of pain today. I really wanted a day in bed but instead I spent the day on th sofa so it doesn't disrupt my (very poor) sleep routine.

🖍 Sunday 11th August

I'm having a nice quiet day as Mandy is at work and Dad's in London visiting my brother and they're going to play golf together.
I'm still in a bit of pain and I'm still feeling exhausted from going out on Thursday.
I've managed to put together a couple of letters to two new pen pals. The rest of the day so far has just been resting on the sofa.
I spent a bit of time colouring this evening. I'm now settled in bed but pain levels are high so I'm just distracting myself.

🎬 Video Description

• Thursday: Time lapse video of me drinking juice of of a green cactus shaped cup
• Friday: Dropping a wooden bead into a small narrow glass jar
• Saturday: Stirring mil into a cup of coffee
• Sunday: Ripping apart sealed individual co-codamol tablets
• Monday: Tying together my shoe laces on my rainbow sparkly Doc Martens
• Tuesday: Photograph of the fishtail braids in my hair 
• Wednesday: Going through the pages to a letter book for a pen friend
• Thursday: Photograph of Dad and I
• Friday: Stirring my tomatoes soup
• Saturday: Opening the nighttime section of my alarmed tablet box
• Sunday: A red envelope and I'm taking off the tape to the sticky

M.E. Association Disability Rating Scale // Severe M.E. Awareness Week 2019

Today’s blog post shares the The M.E. Association's Disability Rating Scale as a way of raising awareness of M.E. and how affects individuals so differently.

I think far too often the stereotype of M.E. is either the fatigue aspect of the illness or the severe aspect of M.E. with individuals being bed-bound. Even with severe M.E. you don’t have to be bed-bound. Many are housebound too, or what I term ‘sofa bound’.

Obviously this scale is a generalised overview of the different severities of M.E. and people with M.E. can’t neatly fit into these tick boxes and some/many individuals will go up and down the scale at various points in their life.


I just thought it would be helpful for readers to see and understand.

MILD

0% DISABLED
Fit and well for at least the past three months. No symptoms at rest or after exertion. Capable of full-time employment or education.

10% DISABLED
Generally well with only occasional mild symptoms. No problems with personal care or daily living. Mobility and cognitive functions may still be restricted but almost back to previous levels. May be able to return to full-time work or education.

20% DISABLED
Normally only mild symptoms at rest but exacerbation will follow activity. Able to carry out all aspects of personal care and to plan and prepare meals. Able to walk short to medium distances (i.e. up to half a mile) on a regular basis. Normally able to return to flexible or part-time work or education.

Moderate

30% DISABLED
Fluctuating level of mild to moderate symptoms. Normally able to carry out all aspects of personal care and to plan and prepare meals. Able to walk short distances on a regular basis. May be able to return to work on a flexible or part-time basis – provided adjustments are made to cope with physical activity or cognitive problems. May have to stop leisure or social pursuits to resume work or education.

40% DISABLED
Moderate symptoms for some or much of the time. Normally able to carry out most activities linked to personal care and normal daily living but may require assistance with meal preparation. May be able to cope with some work-related tasks for short periods – provided they are not mentally or physically strenuous – but not able to resume regular work or education.

50% DISABLED
Moderate symptoms for much or all of the time. Symptom exacerbation follows mental or physical exertion. Not usually confined to the house but mobility restricted to walking up to a few hundred yards at best. May require help with some aspects of personal care. May require help with meal planning and preparation. Requires regular rest periods during the day. Able to carry out light activities (i.e. housework, desk work) linked to normal daily living for short periods but not able to resume regular employment or education.

60% DISABLED
Moderate symptoms for much or all of the time. Significant symptom exacerbation follows mental or physical exertion. Not usually confined to the house but has significant restrictions on mobility when outside and may require wheelchair assistance. Likely to require help with aspects of personal care and meal preparation – but not necessarily on a full-time basis. Requires regular rest periods during the day. Unable to resume any meaningful regular employment or education.

Severe

70% DISABLED
Moderate to severe symptoms for most or all of the time. Confined to the house for much or all of the time. Normally requires help with various aspects of personal care and meal planning and preparation, possibly on a 24- hour basis. Very limited mobility. May require wheelchair assistance.

80% DISABLED
Moderate to severe symptoms for most or all of the time. Only able to carry out a very limited range of physical activities relating to personal care without help. Requires help with meal planning and preparation. 
Frequently unable to leave the house and may be confined to a wheelchair when up or spends much of the day in bed. Unable to concentrate for more than short periods of time. Usually requires daytime and night-time supervision.

Very Severe

90% DISABLED
Severe symptoms – often including marked cognitive dysfunction, for much or all of the time. Bedridden and housebound for much or all of the time. Has considerable difficulties with all aspects of personal care. Unable to plan or prepare meals. Requires practical support and supervision on a 24-hour basis.

100% DISABLED
Severe symptoms – often on a continual basis. Cognitive function (i.e. short-term memory, concentration, attention span) is likely to be very poor. Bedridden and incapable of living independently. Requires a great deal of supervision and practical support – including disability aids such as a hoist or a stair lift – with all aspects of personal care (i.e. feeding, dressing, washing) on a 24-hour basis.

Reference

The M.E. Association

GUEST POST by Laura - Coping with Severe M.E. - Severe M.E. Week 2019

Here are some of my tips for coping with Severe M.E

This year marks ten years of M.E for me. With six and a half of those being severe, I wanted to write a little something that might help others cope. 

It took a long time and a lot of learning to know that just because I’m severely chronically ill, it doesn’t mean my world has to become clinical and without joy. 

1. Experience the outside world from bed.

Ask family and friends to send you photos or little videos of places they’ve been so you get to see the outside world. It will help when you get that caged animal feeling.

2. Use your imagination: you can travel inside your own mind

I’ve been to the beach, walked into my garden and ran by the river just by using my imagination. Go wherever makes you happiest. 

Make your space
your own

3. Make your space your own

It’s very easy for a room to start to feel sterile when you have to have a lot of disability aids and medication about, so I think it’s important to try to keep your space as “you” as possible, especially when it’s the only place you ever see. 

Whether that’s pretty pictures on the walls, your favourite books lining your shelves or snazzy bedding it’s up to you but make it your own. 

For me, this also means keeping as much of the medical stuff out of sight as I can. For example, my mum keeping my catheter supplies in her room, so it’s not piled on my dresser.

4. Audiobooks are a lifesaver for me

I’ve always been so fascinated by the world and all its stories, so to be able to listen to my favourites quietly on my phone is a miracle. 

5. If you can bear it, touch can be such a big comfort

When you are in constant pain and surrounded by carers or nurses it can begin to feel as if the only human contact you receive is clinical. But we’re still human, and we still need comfort. 

Sometimes my Mum holds my hand, or a friend gives me a very gentle squeeze after a visit. Do whatever you can manage or whatever you feel comfortable with. 

6. Grieve

It’s okay to mourn the life you lost and the life you dreamed of having. I had to grieve for my old life before I could accept and find peace in my new one – and I’m happier for it. 

7. Find ways to keep enjoying your passions

For me, this means Mum reading articles from my favourite vegan magazine, looking up new exciting recipes for Mum to try, watching YouTube videos about sustainability and the environment, and listening to Audiobooks about combating racism, about feminism and sociology.

8. Sing your favourite songs in your head

Or, if you can manage it, you could make a playlist of your favourite songs that you can go to when you feel able to listen.

9. Find pen pals

I have found such comfort in sending and receiving little cards in the post. I have so many friends with M.E that I’ve met through the internet and it makes me happy to know I might be making them smile on a bad day. My Mum writes the cards for me which means I’m able to keep in contact with friends.

10. Take photos of the good times

If you do manage to do something, even if it’s a tiny something, take photos and keep them close by. I find it helps to know that there can be good times, even if I’m in the midst of a bad time. 

11. Wear jewellery and/or makeup or put on nice pyjamas

Who says we can’t wear nice things if we’re in bed? I’ve even known people to put on their fanciest clothes for a bit, just to make themselves feel special. Just because we’re ill, it doesn’t mean we can’t make ourselves feel nice if we want to. 

12. Let people know how you’re feeling

It’s up to you how you do this, some people just talk, others put it in a text, some use signs and others use coloured/symbol cards. Just don’t do it alone if you don’t have to.

13. Don’t compare yourself to others

This is easier said than done when it feels like the world is spinning without you but know that everyone is on their own path and comparison really is the thief of joy. You do you. 

14. If you’re able to, explore taste. 

Try different foods or drinks. Find what flavours you enjoy and savour every second. Also, eat what you fancy. Sometimes you’re way too exhausted to get through a meal so make the most of any cravings you might get. 

15. Weight it up

If you’d rather spend time with the people you love instead of using every last drop of energy to have a shower, do it. 

I have bed baths for this very reason, because at the moment a shower would take everything I have and leave nothing for something that might make me smile. 

It might be a different scenario for you, but if you’re struggling with the energy balancing act of “do I do this or that?” my suggestion is to do what will make you happiest.

Reposted from the The M.E. Association blog with permission from Laura