Friday, 23 August 2019

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:

Image result for coffee with notebook
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

Tuesday, 20 August 2019

#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.

Monday, 19 August 2019

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

Tuesday, 13 August 2019

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.


 

Sunday, 11 August 2019

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

Saturday, 10 August 2019

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

Friday, 9 August 2019

GUEST POST by Laura // Tips for 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. 
We're still human

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. 
Take photos of the good times

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. 
Don’t compare
yourself to others

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. 
Do what will make
you happiest

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


Thursday, 8 August 2019

M.E. and Me // BBC Newsbeat // Severe M.E. Week 2019


I featured this documentary last year during M.E. Awareness Week and I wanted to reshare it as it's such a great documentary.

About the Documentary


M.E. an Me is an emotive documentary by Emma Donohoe who herself has M.E. diagnosed at the age of 19. The documentary features several young women living with severe M.E. - Sophie, Hannah and the mother and sister of Merryn who passed away as a result of M.E.

21 year old Sophie has severe M.E.  and has recently been diagnosed with M.E. She lives wth her partner Phil and she also has a young son Lucas. 
In the documentary her partner explains that Sophie "feels like she's a bad mother because she can't stand his [her young son's] own voice" and when speaking with Emma Sophie states "what kind of a mother can't tolerate her own child?". 
At the time of making the documentary Sophie was experiencing a crash in her M.E. which started 3 weeks before filming - in the M.E. community this is a heightened exacerbation of symptoms; as a result as the time of filming Sophie was unable to get out of bed and could tolerate only minimal sound and light. 
Some of her family are supportive but the majority just don't believe in her illness.

Emma explains in the documentary that you never know how long a crash can last but it leaves you feeling 'helpless and hopeless'.

Next Emma goes to meet Hannah who also has severe M.E. who is helping with research by Cure M.E. into M.E. to find a reliable test to diagnose M.E. In the documentary Hannah explains how she fights to be believed by a lot of healthcare professionals, some trying to pass her off as having a mental illness such as OCD or an eating disorder. She says "you're fighting your health and then you're fighting every health professional".

Dr Charles Shepard, a leading professional in M.E. says "It's partly due to lack of medical education on this subject and just not being aware, or even confident about how to diagnose this illness. So in many cases going for a whole year, or even more with no form of management or diagnosis. And this is jus unacceptable."

In next part of the documentary Emma meets with Merryn's mum and sister who talk about the progression on Merryn's M.E. and also how Merryn "was embarrassed of her illness". Merryn's mum speaks about he severity of Merryn's M.E. and how Merryn hod to eventually be tube fed and making choices between her mum washing her or just sitting and holding her hand and talk to her because of how little energy she had and how even when Merryn was told she was terminally ill that Merryn never gave up hope. Merryn passed away just 10 days after her 21st birthday after a 6 year fight with M.E.

At the time of the documentary there was an inquest into Merryn's death to see if M.E. was the cause of her death which now we know it was. Merryn is the youngest person in the UK to have M.E. listed as cause of death. 

In the final part of the documentary Emma explores some of the research into M.E. that is being done. Emma goes to Addenbrooke's Hospital where they take tissue samples from people who have passed away. Through research scientists have been able to discover inflammation in the nerves that carry information in the brain and spinal cord.

Refection


Even though this documentary only features a couple of people with severe M.E. all bed bound it doesn't give a view of those with severe M.E. who are housebound of 'sofa-bound' (though Emma does speak of here time when here M.E. became severe and she was house and sofa bound at points during that time). It excludes those who had mild and moderate M.E. and doesn't show M.E. from that aspect who are the majority of M.E. sufferers as only around 1 in 4 are severe or severely affected so it does't show the 3 in 4. 

However for Severe M.E. Week and today being the pinnacle Severe M.E. Day it does give a good idea a little of what some severely affected M.E. sufferers may be experiencing.

It was also good for Dr Charles Shepard to speak in the documentary and it was good to see the research aspect, though in reality research for M.E. is extremely underfunded.

And though in Emma's case her M.E. drastically improved, though still ill to some degree, the majority of M.E. sufferers don't get that breakthrough. Though I am happy for Emma that she got a significant improvement in her health and for making the documentary.