Making reading accessible

For me I love books but having both dyslexia and Irlens (also called Scotopic Sensitivity) reading can be a challenge.

There are many ways I’ve now made reading accessible to allow me to enjoy books. Here are the main things that have made reading and accessing books easier for me:

1. Audiobooks 

My current book

I used to love books and reading and then when I fell ill in 2013 I began to struggle to read and then I just stopped reading. Discovering audiobooks  opened up the world of books again to me and I fell back in love with them. To me listening to a book is still “reading’ just in a different way that is more accessible for some people.

At first I had a volunteer from my local library bring me audiobooks on CD but I found my library lacked audiobooks for young adults. Now my local library uses a free listening library app. I also used to get CD’s from RNIB before they moved over to using a listening library too.

Having dyslexia and Irlens also makes reading difficult for me and audiobooks is my way around that to make reading more accessible. Plus having a ‘print disability’ it gave me access to some free listening libraries so I could access listening libraries for free.

Earlier in the year in my Disability Services series I wrote about what a print disability is and about the free listening libraries there are that people in the UK may be able to access.

2. My Kindle

How I read on my Kindle

Ever since I got my Kindle I’ve found is so much more easier to read books. Before I struggled with the small text, often using the magnifier on my iPhone as was as using my overlays. So you can imagine the difficulty reading a book!

My Kindle is so lightweight in my lap compared to a book and pressing the screen to turn the page is so much easier. It can be difficult to hold though at times so I mount my Kindle onto my Flexzi stand that is attached to my bed so I can read more easily along with my reading accessible gadget, (more below).

I love that on my Kindle I’ve been able to make the text settings just right for me to make reading accessible. I’ve chosen a font I find easy to read, I’ve made it quite bold too. I’ve also spread out the line spacing and the spacing between paragraphs. I even sometimes enlarge the text when I’m struggling but still want to read. There are other settings too that collectively have truly made reading accessible for me.

Another feature on the Kindle that makes reading accessible for me with my dyslexia is being able to press on a word and get its dictionary definition.

3. My page turner remote

To go with my Kindle I bought this little gadget. It’s a remote control to turn the page on my Kindle. 

The two parts pair together. One part clips to the screen of my Kindle and then there is the remote control. It’s a nice size and the button is big.

The only downside is there is no button to go back a page but when looking for this device I couldn’t find a device with this feature. I do like that this one is white as opposed to black.

It’s definitely has made reading more accessible for me.

I especially use it when I’m having to be reclined or laid flat in bed. It means I can read in this position in bed. I attach my Kindle to my Flexzi stand on my bed. It means I can position my Kindle comfortably and then turn the page with the remote comfortably, easily and accessibly read.

4. My Flexzi stand

My Flexzi stand* attaches to the bar on my bed. It can also be clamped onto other bars like my wheelchair or flat surfaces like a table. I love that it’s pink too. Lots of things can be mounted on it, my iPad, mobile phone and now my Kindle. All I’ve had to do is put a Velcro patch on the back of my Kindle case.

It really helps makes reading accessible as when I mount my Kindle onto it I can read hands-free when holding my Kindle is difficult. I can also then use my page turner remote too to make reading easier so I don’t have to press the page myself depending on what position I’m sat in. 

It also helps when I’m having to lay in bed reclined, tilted, or laid flat as I can position my Flexzi in a way that is comfortable for reading and it enables me to read my Kindle with ease.

*link to a review of it here

5. My Irlens glasses 

I have Irlens, also known as Scotopic Sensitivity. The colour for people with Irlens varies from person-to-person. For me it’s a blue-purple colour. I’ve used overlays but I find them very cumbersome especially as I have to use a combination of two overlays so now I’ve just received my glasss I find them much easier. I also find glasses more universal such as for working on my iPad and for looking at might Kindle as well as for reading. 

I find having Irlens glasses makes reading accessible as I can use them to read my Kindle where I’ve altered the text to make reading easier and accessible. Plus looking through my Irlens glassess means the text doesn’t move around on the page as this is what it is like to have Irlens.

My Irlens glasses 

* Read about Irlens here

(My glasses look more blue as the dark blue was the dominant colour so you can’t tell that there is two purple shades in them as well.)

6. Overlays and reading rulers

These act as an alternative to my Irlens glasses and both act slightly differently.

The overlays colour the page for me making reading the page easier for me.The overlays I have at the moment are two lilac ones.

My reading ruler I have in blue as I couldn’t get a purple one. My reading ruler helps make reading accessible for me as it helps me read text line-by-line.

 

7. Headphones

The final thing that I find makes reading accessible to me is my different headphones.

The first from the top photo is my headband headphones. I found out about these from a YouTube video by Hannah Hodgson (who does great book reviews and she’s helped me find some great reads). Anyway back to my headband. I find these great when I’m wanting or needing to lay on my side in bed and my usual headphones I can’t wear. They have small ear pieces either side which are small and comfortable. You on the front of the headband is a play/pause button and also volume up and down buttons. The headband is paired with my phone via Bluetooth so I can play/pause and alter the volume on my phone to the headband too.

The second thing photographed below is very similar but it’s an eye mask with headphones inside. I do find this one more cushioned and obviously more comfortable for sleep. It has the same controls and as with the headband is connected via Bluetooth so can be controlled on my phone too. I obviously use this one more for listening to books at night or for resting during the day or bad M.E. days when I’m struggling to tolerate the light.

Next are my noise cancelling headphones and AirPods.

I like my Apple AirPods as they connect really well to my iPhone and iPad. The noise cancellation is also great and I like the feature where if I talk it automatically picks it up and pauses until I’ve stopped talking. They’re also nice and portable to take them anywhere with me so I can access audiobooks on the go making them accessible to me.

Sometimes I don’t always like something in my ears so I like my headphones as an alternative. I really do find head phones make reading, i.e. audiobooks accessible to me. I find having something over my ears comforting and I find the noise cancellation blocking out the background noise really helps with my anxiety. I find they also help me too with my brain fog to be able to concentrate on my book more, making my audiobooks more accessible to me.

I have two pairs of headphones so I always have a pair available to me. My lilac ones especially fold down flat so I can easily put them into my rucksack when I’m going out. I wear my headphones around my bungalow and when laid in bed too so I can listen to my audiobooks.

I’ve done pen palling for many years now. It was something I started when I became chronically ill. It became a hobby for me to do as well as reach out to other young people who a few also had chronic health problems or disabilities, others just enjoyed putting pen to paper.

I think I started out buy joining a a Facebook group called LettersOfLove run by Jenny who just wanted a group where people can write to one another without the pressure of having to become pen pals and exchange letters back and forth. I made a few pen pals through that group one I still write to now and I’m still in touch with Jenny. However the group fizzled out as only a couple of members of the group were actively mailing and not receiving much mail in return from inactive members.

I’ve had some negative pen pals in the past but when that happens I just stop writing, the same goes for people where I just don’t feel a compatibility. I’d rather have a positive group of people that I enjoy mailing to.

I’m now in a place where I have a really good group of pen pals. Some people I write to back and forth others we’ll just occasionally exchange mail.

I write all over the world: Switzerland, Germany, Canada, USA and New Zealand as well as the UK. So I do get to see some interesting stamps which I like to collect.

Why mail is so important to me

Mail is so important to me as it gives me a connection to other people. I’m unable to socialise in person and I experience a lot of loneliness and isolation. I also don’t have any friends in person which adds to those feelings. I only really see my carers/PAs and nurses and close family which definitely isn’t the same as hanging out with friends in person. My only interaction with friends is digital messaging like WhatsApp or Instagram alongside letters.

As well as wanting to connect with other people I also want to connect with other young people with chronic illnesses/disabilities. I’d love to meet up with others in real life but for now letters will do. I find it really helpful through letters to share that lived experience of illness and disability and how we live with and cope with our health problems and share ideas such as aids we find helpful or discussing pretty mobility aids and so much more. I like to talk about chronic illness and disability all in a positive way and I find that with the pen pals I have. We also have that balance where we also talk about everyday things too. Things like books, craftings, days out, pets, organising, baking etc. as our health problems aren’t the sum total of who we are. So writing about health and non-health things I find is a good healthy balance. But connecting with other chronically ill/disabled people in a positive way makes me feel like I’m not alone in what I’m dealing with with my own chronic illnesses and disabilities and also what I’m still trying to find answers for. It’s comforting in a way knowing that there’s others out there and also comforting knowing that there’s people that want to take the time to send me mail, whether it be a regular exchange of mail or us occasionally exchanging mail to one another. It’s that kindness of people that means a lot to me.

I have a fantastic group of pen pal now. Some I exchange letters with back and forth others we’ll exchange mail to each other periodically with no obligation to write back. What I also love about my pen pal group is how patient and understanding they are at how slow I am at replying to letters because of my health conditions. They also don’t mind how much or how little I write as they know that that’s all I’m able to do that moment in time to reach out to them. That also works vice versa. I give my pen pals however much time they need to write back due to health, life, work etc. and I also know that however much they’ve written is all they’re able to do that time and I totally understand and appreciate that they’re given me their all. What matters to me most is just receiving that postcode, card or letter and the thought, time and kindness that’s gone into that.

When I write a letter to someone I feel like I’m talking to the person I’m writing to and that gives me that closeness to my pen pals. There’s always something to write about. My life isn’t overly exciting but I can write about my current books and craft projects and my garden at this time of year plus maybe disability things too depending on who I’m writing to. I also love asking my pen pals lots of things too. I also get so much enjoyment out of creating unique mail. Never once have I sent two pieces of mail alike. Sometimes I’ll create a card, other times a letter or occasionally I’ll send a postcard. I love finding and sending novelty shaped postcards; the last one I sent was shaped like a rainbow. I love doing envelope art too and creating lovely cards or pockets for additional pages and stickers. I’m in awe of some of the pen pal creations I see on YouTube and Pinterest which I try to recreate as best I can at times.

It’s lovely to read about what a pen pal has been up to like what they bought on a shopping trip, or their day out at a craft expo, or what they’re currently reading, listening to or making. Other things too like about their job if they have one and how awful their team manager is and a running saga with that. Plus other things like hobbies they’re into like one of my pen pals loves visiting bothies and sometimes writes letters to me on retro computers or on a typewriter. Pen pals will tell me about their favourite holiday places to visit, or in each letter will give me a running commentary about what naughty things their dog has been up to since the last letter. There is just so much that can be written about that I love to read; it takes me into a bubble away from everything. It makes me feel like I’m with that person as I’m reading their letter which is really lovely and it lifts that loneliness I feel a lot of the time.

One day when I’m well enough to travel I’d love to go and meet some of my UK pen pals. (I think travelling internationally to meet my international pen pals would be a bit too much just yet.)

It’s lovely to see something pretty come through the letter box among boring white and brown envelopes containing medical appointments, council tax and water bill mail. Especially on a day when I’m struggling either with physical symptoms or my mental health, it really does brighten my day. It also reminds me that people are thinking of me and that I’m not alone and people do want to take the time to write to me. It’s lovely to see the postcard. Or with letters how they’ve decorated the envelope, the writing paper they’ve used or how they decorated the paper. As well it’s always kind if extras have been included like sheets of writing paper for me to use, stickers, funky post-it notes and paper clips, mini activities like a question sheet, something to colour in, a wordsearch or suduko page. With cards it’s lovely to see what card my friend has bought for me. I have one friend who always buys very ‘me’ cards. I also love seeing handmade creations too.

When I lived at my Dad’s I had a giant notice board with lots of novelty push pins to display my pen pal mail. I really missed that when I moved into my bungalow as it was too big to put up here. Then just this Christmas gone I got some fairy lights with pegs to display cards and little bits that are included inside. I love this as I love fairy lights so it’s a great way to display my mail. (Fairy lights are perfect as I love soft lighting and with my M.E. I can cope much better with lighting like fairy lights especially as I can dim these peg fairy lights.)

Another reason why mail means a lot to me is I like to have my mail to look at in my room as it reminds me of who has sent me what. My most special mail I have where I can see it from my bed most easily and my peg lights go behind my bed. I can look at everything pegged up and know who it is from. Looking at my pen pal mail reminds me of the love put into that card and how loved I am by people and the kindness of people and how grateful I am for everyone who has ever sent me something. It really brightens me up to look at it especially when I’m struggling on my bad days. This really means a lot to me as when I’m at my worst with my M.E. and not being able to get out of bed or move, or when my pain is so bad or other symptoms are keeping me bed bound it’s lovely to have something uplifting to look at that reminds me that I’m not alone and that there are lots of people in the the world that care about me and think of me and that no matter how alone I feel I’m not alone.

So that is all of why mail is so important to me. It is so much more than simply a card in the mail.

Cards2Warriors

My tea mail

I also wanted to give a shout out to Cards2Warriors. 

They are an amazing organisation based in the USA but support people all over the world. They’re amazing volunteers have really supported me over by sending me cards of support. This really means a lot when you’re dealing a lot with your living with conditions like severe M.E. 

I’ve also received cards from school project volunteers in the USA who participate for extra credit. This also really means a lot to me that they give up their own time to make cards and write to me.

Receiving mail from Cards2Warrriors reminds me that lots of other people are thinking of me and wanting to show me support. 

I also won their tea mail competition and received a stash of Taylor’s peppermint tea which I really enjoyed.

Using a manual wheelchair and a Batec

This is a post for another day but there are different mobility aids for everyone, even people with the same illness. Some people like myself also use a mixture of mobility aids to meet their needs depending on their symptoms at thar time or for certain occasions like leaving the house or going longer distances such as when shopping.

Best of both 

Having both a manual wheelchair and my Batec wheelchair power attachment I feel like I have the best of both worlds. I can use my chair manually when I’m able to like around my home. Then when I can’t push my chair such as when I’m out my bungalow I can attach my Batec and zoom off. This means I don’t have to struggle pushing my chair and my Batec allows me more freedom and independence.

I definitely wouldn’t manage without my Batec and my wheelchair and Batec really go together. I definitely couldn’t be a manual wheelchair user without my Batec either. Even just going out to the post box I couldn’t manage by pushing myself. My Batec enables me to do so much more.

One of the reasons why I got at GTM wheelchair is because they are so compatible with Batec’s.

Using a manual wheelchair 

For me when it comes to my wheelchair I use a manual wheelchair with some adaptions to make it easier for me to use.

In my years looking into buying a wheelchair I did look into folding electric wheelchairs but they just didn’t ‘click’ with me. I didn’t like the standard seating and just sat with a joystick to move around, though very energy saving for me just didn’t feel like it fitted with me.

I’d tried out some manual wheelchairs and they felt more ‘me’ as I liked being more mobile but I hadn’t yet fully made my mind up on going for a manual wheelchair and electric wheelchairs were still on my mind.

When I got my demo with an ultra lightweight manual wheelchair I realised that actually I can push myself. It also helped that the demo chair’s push rims were gekko grip push rims so it made me also realise with additions like this it would aid my ability to push a manual wheelchair. That’s how I ended up with my GTM Mustang manual wheelchair. (Just to cut a long story short).

My GTM chair is very lightweight making it so easy to get around in. 

Some of the additional customisations I went for are large push rims with gekko grip. The push rims are Carbolife Curve L so they’re ergonomically shaped making them so comfortable and supportive.. Going for the larger size even though my hands are small I find them easier to grip especially if my hands are in spasm. The gekko grip is amazing and such a great addition I don’t know how I’d push my chair without it. It’s so amazing, I can even push my chair with my hand in a fist or with the heel of my hand. 

I also got Spinergy wheels for my chair which are really lightweight wheels. The lighter the weight of my chair the easier it is to push.

I like having a manual chair as it keeps me active and I like to feel active in my chair. While I’ve got the ability to be in a manual wheelchair I want to be able to use one. I’m doing a lot of work with my physiotherapist to help me strengthen my arms and shoulders so I can get around in my chair.

It is still very exhausting and difficult sometimes though. I do known that maybe one day I might need an addition to my chair like a Smart Drive which is a power assisted device for wheelchairs that I’ve looked into. It’s a bit like a miniature Batec but it helps me push my chair.

My Batec

I have the Batec Mini 2. There are different models of the Batec depending on what you want to do with it. My Batec can be folded up which makes it easier to transport and store.

My Batec attaches to the front of my wheelchair. Under my wheelchair I have a bracket to dock the Batec so it can attach and detach. It literally takes less a minute to attach or detach my Batec from my wheelchair it really is that easy.

I got my Batec before I got my GTM chair but getting my Batec made me realise just how much I really needed a new wheelchair. I made me realise how my previous NHS wheelchair really wasn’t meeting my needs. I’ve had my GTM chair just over a month and it’s really changed my life. It’s also a lot more comfortable to ride with my Batec too.

Having my Batec is amazing and has really helped my mental health. I’m not able to push myself around to go out for some fresh air but now I can. I’ve even gone along on a bike ride with my Dad on my Batec and I was easily able to keep up with his speed!

I also love the suspension I have in my wheelchair and it’s so comfortable to ride in my wheelchair with my Batec.

Having a Batec is essential for me. I was so lost without it when it was out of action until it was fixed. Without my Batec I was unable to leave the house.

I also find my Batec more sociable. It’s nice to be able to ride alongside someone like when I’m pushing my chair alongside someone just like you do if you were walking together, only I’m in a wheelchair.

Using my bullet journey to organise my life

I’ve been bullet journaling for a couple of years now. I have various layouts to help me keep on top of everything. Since I’ve really gotten into bullet journaling and found how to use it in a way that works for me it’s really helped me organise my life and my health and stay on top of things and reduce my anxiety too. I also get a lot of enjoyment out of bullet journaling too coming up with different creative layout designs.

I had tried bullet journaling in the past but I wasn’t quite sure what I was doing and how to bullet journal so I didn’t stick with it. Then I watched a YouTube video and the person spoke about how they used their bullet journal to streamline their life and health. I saw some of their layouts and it looked helpful and something that would benefit me so I thought I’d give it another try. I looked on Pinterest for bullet journaling for chronic illness layouts but I don’t get much results so I made up what I thought would be helpful. My past few bullet journals have altered to reflect what I’ve needed plus how I’ve developed and learnt more about how to do and use a bullet journal.

About me

I loved doing the a creative ‘about me’ page on the first page of my bullet journal for this year.

I’ve used stickers and doodles to show my favourite things and some words as well. I’ve got things like my favourite animals, colours, tea and coffee, blogging, books/audiobooks and pen palling. Basically it was things I could find stickers for. I’m now just missing a Moomin character sticker, especially if I could get my favourite character Little My. I’ve also written my favourite quote on there as well.

How I use my bullet journal for my health

Year in Pixels 

Fatigue ‘Year in Pixels’

This year and last I’ve done a layout called ‘A Year in Pixels’. I got the idea from my Medical History Passport as one of the page inserts for it is this. This year I’m recording my pain and fatigue levels. Last year I tracked how many headaches and migraines I had over the year. I chose to track pain and fatigue as they are my two main symptoms overarching symptoms.

How this layout works is down the side you have the dates of the month (1-31) and across the top you have the first letter of each month. I have a colour key to score my pain and fatigue levels each day ranging from great to severe: green, yellow, orange or red. For each day’s square I mark the score of how my pain and fatigue levels have been that day.

Doing this for my pain and fatigue will help me notice correlations between my pain and fatigue. I can also notice trends like colours building up in severity and how long severe or great pain or fatigue periods last. It’s quite helpful information to have and might help to use in things like some of my medical appointments. I can also tie it in with the symptom diary I keep too.

Symptom diary

As part of each month’s layout I keep a symptom diary. Each day I keep a record of my symptoms that day and and factors that might affect my symptoms. Sometimes I highlight anything significant such as a particularly bad seizure, a migraine or an M.E. crash.

It’s also helpful for things like medical appointments as it’s a prompt for me to know what symptoms I’ve been experiencing. It’s also helpful for me to track my symptoms too and notice any patters, trends or changes.

Monthly tracking and goal setting and prompts 

On my monthly layout it will vary but in the past I’ve tracked particular symptoms that month. For example pain, fatigue and mood. 

I’ve also set daily reminders and goals. For example daily goals and reminders to rest, do a daily body scan exercise and also my physio exercises. Sometimes I have one daily goal/reminder to do other months I’ve tried to set myself more. I’m also really bad at not doing catheter maintenance so I’ve also tried some months to do a layout to remind me to do it.

Over time I’ve found what has and hasn’t been helpful to include and track on my monthly layout and I’m still adjusting to try and find what works best for me.

Layouts for organising my life

I love doing layouts I find them so fun to do. Every layout I do I always design it differently. I don’t have a go-to design style like some people.

Monthly and weekly layouts 

I love my monthly layout with things like who I need to write to that month, my to do list, birthdays etc. All things I need to remember that help organise my month. It’s a good go-to page. I usually have a tracker or goal setter of some kind too. I might have a few or I might have one; I’m still working on this element.

Last year’s journal was bigger so alongside my monthly layout I drew a month calendar layout to chart key dates, reminders etc. In my journal this year it’s smaller so I’ve struggled to know how to input key dates, daily to-do tasks and reminders. Recently however I saw on instagram a post from someone I know a weekly layout they’d done in their bullet journal. I slightly altered the layout and did it over two pages as well but I think it’s going to really work for me. (Plus more layouts equals more fun designing.)

So what I’m planning on doing now is having my monthly layout, weekly layouts covering the whole month and then a symptom diary for the month and then onto the next month and repeat.

Example of a monthly and a weekly layout

Utility bills 

I have a pay-as-you-go smart meter for my gas and electric. Every Monday morning I log the meter readings for my gas and electric. In my bullet journal I have a one layout for my gas meter and one for my electric meter. I put in the date, meter reading and how much gas and electric I’ve used that past week so I can check my usage and see if prices have increased/decreased. I also log when I top up my meters each month; with how much I’ve added and the new meter total.

I just find doing this helps me stay on top of having a meter for my gas and electric as I can see my weekly usage. It also helps me know better how much to add to the meters when I top them up especially when I’m living on a budget and a fixed income.

Spend free days

Being dyslexic I’m a very visual person. I created this page to motivate me to spend less this year.

How it works is bills and other essentials don’t count. On a day where I spend something non-essential the day gets crossed out. On a day where nothing is purchased the day day gets a coloured mark. For me the more colour I see the more motivated I am to have another spend free day and it’s really helping me think about my spending and buying less.

What I tend to do now though is if I do buy a non-essential making it a spend day I tend to group what I need to buy onto that day to reduce my number of spend days. I am still more mindful of what I’m buying more now though this year and I literally will only buy what I need.

Lists

Like with my memory and anxiety I find my lists help to organise my life. They just clarify everything for me. Like when I can see who to thank after Christmas or a plan to declutter my bungalow or to complete my stash of craft kits it all suddenly becomes clearer and unmuddled. The task whatsoever it is becomes organised and actually now looks doable. I also get a sense of achievement too when I see boxes getting ticked off or coloured in.

Countdowns

I loved doing a countdown for my wheelchair arriving. I started it in my old bullet journal from the day I bought it but it was easier to do the countdown from the start of this year in this year’s journal. Doing the countdown helped me get through the long wait for my chair and towards the excitement of receiving it.

How home is adapted for me

One of the main reasons why I moved into my own home was because I needed somewhere that would better meet my needs. Back where I was living before at my Dad and stepmum’s there was many things I found inaccessible. Firstly and a big one was the stairs. Even bum shuffling up and down them was a real struggle especially the worse my health became particularly on my bad days. There was also nowhere to store my wheelchair in the house. I also couldn’t have some of the adaptations I needed like grab rails, a second stair bannister or a key safe as well as things like a perching stool in the kitchen. My bath lift was a constant annoyance for my stepmum and also when we had people like my brother come and stay over.

I’ve been living here nearly two years now and my housing association has done a great job over time at adapting my bungalow to meet my needs.

One thing I love about my home is how compact it is. I only have a front room with integrated kitchen and living room (and a craft area), my bedroom, bathroom and then my lovely back garden (which is an ultimate added bonus). Not having to travel far around my bungalow is amazing and is so helpful especially with my limited energy and mobility. It’s also very accessible for my crutches and wheelchair.

I have smart lighting and smart plugs around my home in the front room and bedroom. This makes it much easier for me to control the lighting. The main lights and lamps have smart bulbs in them; I can change the colour of the main lights to suit what I’m doing. I can also control how dim or bright the lights and lamps are. I have a smart light switch in my bedroom to make it easier in say an emergency for someone to put the lights on brighter. The switch also comes off and can be used as a remote. Normally I control the lights on my Apple HomePods or on my iPhone or iPad. I also have pre-set light mode settings.

My HomePods also have other features like timers, alarms, weather, speakers. I can also use it as an intercom to communicate with my carers in the front room when I’m in my bedroom if they can’t hear me. 

I also have remote controlled lights in my bedroom for softer lighting or sensory lighting. I’d love to get remote controlled blinds and a smart thermostat as well at some point.

How my new home has been adapted 

Ways in which my new home has been adapted or equipment I now have to make my life easier and to support and enable me to live independently.

Outside the front of my bungalow

• I have a key safe people can access my home when I’m unable to open the door myself.
• The ramped path up to my front door has been widened so I can turn my wheelchair around at the front door. Rails have also been installed either side of the ramped path.
• On my front door I have a T-Pull bar which allows me to pull the door towards me when I’m in my wheelchair so I can close and lock it.
• I have a Ring doorbell which I find helpful and it makes me feel safer. It allows me to communicate with carers especially if I’m unable to open the door I can ask them to use the key safe. I can also communicate with other people at my front door such as ask people to give me extra time to get to the door or to check ID.
• My Dad has made the front garden very low maintenance for me.

In my front room

• My inside front door has a thumb lock. Instead of struggling with keys (even with my KeyWing adapters on) I just have a large knob to twist to lock and unlock the door.
• I have a perching stool to use in the kitchen.
• In the kitchen I bought an induction hob oven. Though my PA/carers do most of the cooking I like to cook and bake sometimes with my PA. I got an induction hob because it was much safer than a gas or electric hob oven and it really does have a lot of safety features which I like.
• I have the furniture spread out so there is room for my wheelchair, it’s also easier to navigate to chairs in my sitting area and craft desk when I’m walking on my crutches. I also like to keep the floor clear of trip hazards and to give me landing space should I fall!
• I have a little parking space for my wheelchair and my Batec.
• I’ve also turned my fridge door into an organisation board which I find helpful.
• I have my hospital ‘go bag’ hanging by the front door.

In my bedroom 

I spend a lot of time in bed so I’ve set the area up around my bed to have everything I need. So my bedside draws are all organised with what I need and I have a few things under my bed within reach that I might need to access. - I plan to do a blog post on how I’ve created my bed space to be accessible for me.

• 

  My mushroom lamp

  The door between my front room and bedroom is a fire door. The fire service recommended this and there wasn’t a legal requirement for my housing association to put one I but they did. This gives me a lot of reassurance especially at night time or on a bad day when evacuating on my own would physically be difficult.
• The fire service also on the latest annual assessment recommended I get a CareLink smoke detector so I’ve had one of those put up in my bedroom. Should it go off CareLink will be alerted that my smoke detector has gone off and they can ask over the intercom if I’m okay or need the fire service calling if there is a fire (hopefully never).
• My CareLink intercom is also in my bedroom but they can hear me all over the bungalow (if they can’t they’ll call me). I wear a watch on my wrist I can either press it for emergency assistance or if I fall it picks up the impact and alerts CareLink and they come on the intercom to see if I need help. 
• I have my profiling bed, this allows me to independently get comfortable. It also helps me manage my autonomic symptoms by being able to tilt my bed and slowly sit myself up if I’ve been laid down. It’s also beneficial for those caring for me, including PAs/carers, nurses, community phlebotomists etc. (and when Hollie comes to massage me) as I can raise the hight of the bed making care tasks easier and protecting their backs.
• I also have a hybrid airflow mattress on my bed. This means it’s a static mattress with air flow tubes on top. - I’ve recently got a new mattress which is more comfortable because before I used to lay on the moving air tubes but now I lay on memory foam with the air flow underneath. What I like about my new mattress is how very quiet it is which is great for my hypersensitivity. My air flow mattress is there to help prevent me from developing pressure sores.
• My bed can also be accessed from either side now in my new home which is helpful.
• Over the top of my bed I have an over bed table. It’s nearly the length of my bed and can raise or lower in height. It’s on wheels so I can have it at the end of my bed or I can bring it towards myself to eat or do activities. A large portion of the table tilts at different levels so that’s helpful at times for some activities. Then the other part of the table just remains flat so I have a non-spill cup holder there and usually my pop socket phone holder. I also have a rechargeable lamp clipped onto my table that has three light settings and can dim and brighten which is helpful for activities and reading.
• Attached to my bed I have my Flexzi iPad stand which is amazing for hands free iPad use when I’m reclined or laid in bed.
• I also have plenty of room to store my medical supplies in my bedroom as it’s a good size room.
• I also have soft and sensory lighting in my bedroom. For example I have my different fairy lights; some come with a remote that I can dim and brighten. I also have my mushroom lamp that I find helpful for low lighting; it also has sensory light settings on it too. My aromatherapy diffuser has sensory lighting on as well. I also have my Mathmos Space Projector to project a lava lamp or a moving floral image onto the ceiling.

In my bathroom 

My bathroom isn’t a wet room. It’s a normal bathroom with a bath which is what I needed when I was looking for a property. 

• I can’t physically tolerate the sensation of a shower it’s very painful for me so I have a bath each day. To get in and out the bath I use a bath lift which lowers me into the bath and then raises me out.
• I also have a grab rail next to the bath so I can sit myself forward and I also have a grab rail near the toilet that I use.
• I also have more storage for medical supplies in the bathroom.

Outside in the garden

• My Occupational Therapist has given me a step as the step down is too far on its own for me. (I find it strange with my bungalow being a new building and the front of the building is ramped but there’s a giant step at the back of the building.)
• I’ve got a grab rail on the wall to hold onto as I step down onto the patio.
• On my keys on the back door I have a key wing to make it easier to turn the key. (I have lots of little gadgets).
• My Dad keeps up the with the gardening for me and is designing it to be easy maintenance for me so I can enjoy it but have what I want. For example raised beds so they’re at a better height for me. I also wanted a lot of nature in my garden so I have a bog garden than needs no maintenance and my seating areas will be fake grass so there’s less grass for my Dad to maintain. My wildflower patch that we’re hoping planting this year will also be low maintenance. I plan to install a watering system to make it easier once I have plants.

I feel so lucky at my age to have my own home and to have had it adapted for my needs. I’m also really grateful for my equipment that allows me to live more independently and give me more comfort like my bed and mattress. And also my Batec and very soon to arrive GTM wheelchair! I’m also grateful for my care team too as without them all: PAs/carers, the community nursing team, the community therapy team (OTs and physios), and my family and everyone else Ikve not listed wouldn’t still be here without them all. I hope I will have many more happy years living here.

I am worried of course about the proposed cuts to benefits as it would have a HUGE impact on my ability to live independently. From the practical side of paying for my bills, utilities, food etc. but also my disability extra costs. Being disabled can be very expensive, cuts to my benefits would also impact on my ability to buy my gadgets that allow me to do tasks independently. As well as little things benefits allow me buy essential equipment not provided for by the NHS such as my Batec and my new GTM wheelchair.

I really hope that if the benefit cuts go ahead the government will listen to campaign groups like Scope in the impact it will have on disabled people like myself and I won’t be affected too much so I can continue living on my own. I wrote another article for Scope this one shares my story one the impact benefit cuts could have on me as a disabled person who lives alone.

Disability services: Specavers home eye test

I’ve shared in a previous blog post about disability services I use and would recommend and I wanted to add about Specsavers home eye tests to this list.

Recently I had a home eye test and I wanted to leave a review and also make people aware that this service is available. Having an eye test at home is something I’ve had before in the past but it was quite a while ago. I recently chose to have my eye test at home again because of the lack of accessibility at my two local Specsavers - (I wanted to go with Specavers specifically as I needed new glasses and I wanted to get Cath Kidston frames which only Specsavers do). As well with Specsavers offering home eye tests meant that it was much easier for me to get my eyes tested as I was well overdue and trying to find a wheelchair accessible opticians vs going for a home eye test is one less task for me. The alternative would be having to consider things like disabled parking plus access in the opticians and then once I have my prescription head to Specsavers to get my Cath Kidston frames which all of that as you can imagine is a total headache compared to a Specavers home eye test. 

It’s also important to look after your eyes and have them tested regularly and just as important as seeing your dentist or GP or consultant.

The eye test

 It was really convenient, I was able to ask for an afternoon appointment to work around when I’m free after my PA (carer) had finished work. They don’t specify a time so there was a bit of waiting around for them to turn up but they did call me to say when they were on their way to me and would be with me soon.

Once they arrive they are able to set up wherever you’d be most comfortable so in a chair or staying sat in your wheelchair or you can even be in bed if needed for some people.

They started by taking a medical history and asking about how my vision has been since my last eye test and any problems I’ve been experiencing. They also ask if I was still under the hospital eye clinic - they check this especially if your illness affects your vision. I was also asked other questions about how my vision has been since my last eye test.

You don’t get the fully comprehensive test that you’d get in store as they can’t bring every piece of equipment with them. However they did have a small gadget to measure the pressure in my eyes and an opthalmascope to look into the back of my eyes.

They used an iPad for the letter board and set that up and used the traditional lens changing glasses and did a traditional eye test asking me the usual questions over and over like if one looks better than two, or three looks better than four, or whether I could see the letters better with or without etc. as well as asking what letters could be read on what line. They also checked my prism for my double vision and asked whether my double vision goes side-to-side or over the top - for me it the former.

I was also shown on the iPad paragraphs of text in different font sizes and asked what text size I could comfortably read. They slightly altered the lenses and asked if I could read and font smaller than before or not.

Choosing my glasses

 They’d brought along with them a big case of glasses to look at. That’s one downside to home eye tests, you don’t have a shop full of frames to choose from and you’re limited on what frames they bring along with them especially as they have to bring a selection that will suit a range of ages and styles for a wide variety of people. I did like some of the frames in the box but I really wanted to try both the frames I’d asked for. I’d asked for two particular Cath Kidston frames to be bought along that I’d seen and liked on the Specsavers website but only one had been brought so they came back for a second time with both frames for me. The mixup only happened because my appointment had been rescheduled but usually the frames you ask to be brought are brought along.

Tip: You can look on the Specsavers website like I did and ask for specific frames to be brought along and most of the time they are brought which is what I did. 

If there aren’t any frames you like the home eye test team can come back out to you with more frames to look at until you find something that you like. I found the Specsavers staff good at helping me choose my frames and what suited me and which frames I should have as a clear pair and which as my dark tinted pair. You can still add things like anti-glare to your glasses and coloured tints like you can if you went into the Specsavers store.

Getting my glasses delivered and fitted

Once I chose my glasses I had to wait for them to be made. When they were ready the Specsavers team arranged a suitable time to come round to deliver and fit my glasses.

When the lady came she showed me my glasses to make sure I was happy with them and then she fitted them. My frames didn’t need a heat machine she just needed to bend them to fit them and she ensured they felt comfortable and fitted well. She gave me the number to call should I need them to come out again to adjust the fit as she said they can change over the next few weeks as I wear them more. It’s free for them to back out to me just like the rest of the service I’ve received from my home visits.

Eligibility and funding 

You do have to be eligible for home eye tests; this could be because of a physical disability including access issues such as wheelchair access mor a mental illness such as anxiety disorders or due to health issues in old age - you can be any age to have a home eye test if you’re eligible. 

They also go through funding eligibility such as whether you’re eligible for free NHS eye tests and if you do buy glasses what components are funded and what you have to pay. So for me when I bought my glasses I had an NHS voucher to part-pay for my glasses and I also had funding to pay for the prisms in each eye of my glasses; the rest of the bill for the frames, anti-glare coating and darker tint I had to pay for myself.

You can pay in different ways; I paid on their card machine which I found to have a very accessible screen.

They also brought mini printers with them to print off my prescription and also my receipt once I’d chosen and bought my glasses.

If you’re not eligible you can still have a home eye test for a fee of £

Other things

 If needed they can refer people to their GP or to the hospital for further consultation. In my case because my health conditions affect my vision they put me down as needing another eye test in a year’s time just to keep a check on any changes to my vision.

The staff also all carry ID so if you’re unsure you can always ask to check their ID at the door before you let them in. I found the staff more than happy for me to check their ID.

Final thoughts

All-in-all it’s a service I’d highly recommend if accessing an traditional opticians would be difficult for you for whatever reason, whether that be poor physical access to physically get into an opticians, or due to being housebound or bed bound because of physical or if you have mental health illness such as an anxiety disorder. It was easy and convenient to book my appointment and buy my new glasses and to prove my eligibility for a home eye test. It also meant that my eyes got tested rather than going without especially as my illness does affect my vision.

It was also good that they were able to come back out to me with both of the frames I had an interest in.

The staff were friendly and helpful and willing to go with whatever was easiest for me. I felt like I got a good service throughout and a comprehensive eye test, as well as the service I got when choosing my new glasses both when I was looking at the frames brought along at my original eye test and when they came back out to me.

The service was fully free at no extra cost for all the times they came out to me which was great and much more accessible for me as well - it was less exhausting, I didn’t have to worry about access for my wheelchair and Batec as well as disabled parking, my hypersensitivity to noise, accessible toilets and more.

I also found the whole service more person centred and it was more laid back and met my needs better. Every visit was in the comfort of my own home and I didn’t need to worry about anything like in the middle of my eye test I was able to go to my bathroom. The staff I all met were all so friendly and accommodating and professional and knowledgeable. I definitely know I’ll be having my next eye at home again.

What I put in my hospital ‘go bag’

I keep a bag hung near the front door which is my my hospital ‘go bag’; it’s a pre-packed bag of essentials should I ever go to hospital in an emergency such as via ambulance or when I go to hospital which might result in an emergency admission. It’s easy for someone to grab for me like a paramedic or family member and it’s easy to spot as well. I also get someone to get my phone and Medical Passport to take with me as well - my Medical Passport is also quite important to bring along into hospital with me too, plus it helps me communicate my medical needs.

So, what do I keep in it?

Medication

The first thing that is in is inside is a clear toiletries bag of medication. I’ve tried to put in as much of my regular medication as possible that is still in the pill packets as this is the only way they can be written up in hospital. If I took my medication tray it can’t be used as individual medication can’t be accurately identified from one pill to the other. Sometimes it’s allowed though but not always so I always try to take pill packets so I can have my medication until the hospital pharmacy can provide my medication. I put my medication in a clear bag so it can be seen that it contains medication; also inside I keep an up-to-date list from my prescription sheet of what I’m currently prescribed so they know what to prescribe me in terms of my regular medications.

Toiletries 

I have a small bag of toiletries with just the essentials including:

• Pack of travel size Fresh Wipes - these wash wipes are great to take into hospital and make it so much easier for the staff to help me freshen up in bed when I don’t need a full-on wash with a bowl of water, shower gel and a flannel 
• I also have a packet of sterile wet wipes that I get with my medical supplies order, I use these to clean around my tube site, I’ve also got some wipes for sanitising my tube. I’ve also put in a tubie pad set as well so I can put a fresh set on for hygiene.
• TangleTeezer hairbrush and a hair tie
• Mini dry shampoo 
• Toothbrush and travel size toothpaste 
• Deodorant 
• I also use the sterile wet wipes to wash my face so I’ve got a travel tub of moisturiser to put on so I can freshen my face up as I find hospital air stuffy and it dries my skin out
• Packet of tissues and hand sanitiser - both always helpful especially as I can’t use the hospital alcohol based hand sanitiser 

I try to just pack the essentials as I don’t know how long I’ll be in hospital for. The main things I haven’t been able to pack in my toiletries bag is my barrier creams as I don’t have room for them all and I don’t know how long I’ll be in hospital for and if I am admitted I can get someone to pack them along with everything else I need like pyjamas etc. and have them brought to me.

Other essentials I’ve packed

In the front pocket of my bag I’ve packed a few other essentials:

• My power bank that can recharge my phone multiple times plus cables to got with it to charge my phone and the power bank itself 
• Then in a purse I made I keep:
• Two types of ear plugs: the first pair are complete high rating noise cancellation earplugs and the other pair blocks out background noise but still allows me to hear conversations while wearing them
• Noise cancelling earbuds - when I’m in hospital I just constantly listen to lots of books as I’m usually too unwell to do anything else to occupy myself
• A £10 note for ‘just in case’
• I also have a small book of communication cards that helps speak for me as sometimes my speech can be affected and on occasions I’m unable to verbally communicate. Without my book it can be very difficult staff from experience don’t always have the ability to understand why I can’t [or to them won’t] talk, sometimes staff are good and will allow me to communicate by blinking or squeezing their hand one for yes two for no, or writing letters on their hand - however it would be a lot easier if more people knew BSL so I could finger spell and use Sign Supported English (SSE) like I normally do at home when my speech is being challenging.
• One card gives my personal information: name, date of birth, emergency contact and brief medical information including the fact I don’t like cannulas in my hand. I also have cards explaining my main medical conditions and a card saying that my speech is challenging for me at the moment and to go with that a yes/no card.

I did think about packing some medical supplies especially drainage bags but my bag is only a mini rucksack and there is no room left in it at all and I usually expect and hope that the hospital to have what I need that will be suitable. If not I can get someone to pack what I need from home.

I’ve put a tag on so my cables are labelled as to what they are then on the reverse they have my name and mobile number. My other possessions are labelled with my name and mobile number too, just in case the get lost and if so they can be returned to me. I’ve had things go missing before usually when I’m being moved from one bed or ward to another so I’ve found it helpful to tag my positions. 

I find it really helpful to have this bag to use the essentials in there to take with me to Emergency Department visits that won’t result in a potential admission but I know that in there I’ve got some things I’ll need while I’m at the ED which I can pop back in once I get home. Such as taking my power bank, noise cancelling earplugs, communication cards etc. Once I’m home I can put them back in the bag ready to go. 

I think the only thing missing from my bag that I need to add to it is a luggage tag to identify it as my bag so that’s my next thing to add to it just in case it goes missing when I’m being moved beds/wards or I’m separated from my bag such as if I’m being taken for a scan.

Despite all being prepared with my bag I always hope to not need it, but it’s good to be prepared and it makes it a lot easier as I don’t have to get someone running around packing things for me while the paramedics are ready to take me off to to hospital.

Finally on my phone I keep a list of what I need additionally packing for me should I be admitted into hospital, I like to be prepared and having this list means that whoever is packing for me will pack everything I need and nothing will get forgotten.

The challenges of when my carers aren’t here

When my PA calls in sick depending on how much notice they give me I try to arrange emergency care cover with my care agency, unfortunately they can’t always provide cover so then I’m left with no option but to try and cope on my own which can be is difficult, made worse by the unpredictability of my health conditions. Sometimes I book in agency care but there’s a miscommunication and my care doesn’t get scheduled so I’m left without care then too.

When I have care I try to be as independent as I can be and do as much as I can for myself within my ability that given day. Often I wish that I didn’t have a need for care and that I could do everything for myself; that I could just get a bath with simple ease and that I can manage my home all on my own. However when I’m without care that’s when I realise just how much I rely upon my PAs/carers just for the simplest of things to support and enable me to do most things.

It’s not until I’m without care that I realise just how exhausting it is to do the simplest of things like get basic meals, get drinks, get dressed. I have to ration my energy and decide where best to put it; I also have to set reminders to eat and do other tasks otherwise I forget to as my memory lapses over what time in the day it is. When I’m without care I aim to get myself dressed as I find having pyjama days negatively affect my sleep routine. However sometimes I’m just too exhausted to get dressed and I can’t manage the task on my own as usual my PAs/carers give me a hand with getting dressed when they’re here.

Thankfully though I will usually have some evening care so I’m still able to get a wash of some sort, I try to aim for a sink wash but on a bad day if I’m exhausted from not having care in the day or it’s one of my bad days all I can manage is a wash in bed with a fresh set of pyjamas. I still feel clean and ready for bed but it’s not the same as my PA/carer enabling me to have a bath as part of my morning routine. A quick shower in the evening isn’t possible, there’s time but my hypersensitivity can’t tolerate showers and doing something quickly I find hard as I need to go slow and pace my care.

Getting breakfast and dinner is difficult, I just get simple things to make it easier for me, like cereal or yogurt and fruit for meals. At least my tea, hopefully, will be cooked by the evening PA/carer and I can leave my pots to be washed by them - another exhausting job I don’t have to do. I often try to leave as many jobs as possible for my PAs/carers to do to save my energy even if t means that to pots to wash stack up or my laundry basket gets a bit full as I can’t put a load on as I have no one to help me put it on the airer or fold and put it away.

When my evening PA/carer is off I try to prepare things in the day with my PA/carer (if I have one). I’ll have my main meal at dinner time midday and a sandwich will go in the fridge to eat later. My night bag will be set up for me and also my night drinks will be made up too so all I have to aim to do later on is set a remember to eat my sandwich and get into my pyjamas.

When my main PA had COVID last year I tried to manage as best I could (my care agency back then didn’t provide emergency care) on my own before I became so exhausted I couldn’t go on. In tears over how exhausted I was I called the adult social care service and their urgent care team stepped in to come in and care for me. It was a much welcome relief to get some care and I’m still so grateful for that service as I don’t know what I would have done or how I would have gone on without them. It’s also good to know that the service is there should I ever need it again.

My main hope is to get a full team of PAs so I don’t need a care agency and some of my PAs in my care team will be able to cover for other PAs in situations such as sickness or annual leave so that I’m not without care.

It’s difficult realising just how much I need the support and enablement my PAs/carers give me but it allows me to live an independent life in my own home despite all the challenges with my health. I’m truly grateful to what my PAs and carers give to me.

My full-time job

Behind the scenes of my disability is my full-time job as it often feels. Outwardly you see me laid in bed listening to a book or going for a ride with my Batec but there is a lot more to living with chronic health conditions than people realise.

Firstly there is the management of my care, yes I use agencies to manage my PAs and also a care agency but if a PA is away I have to arrange alternative care myself. I also have the paperwork that comes with having Direct Payments to employ my own PAs and occasionally I have to call or email adult social care about my care. Sometimes there are also meetings with social workers or the finance department. I’m also trying to employ PAs so there is admin involved with that too including looking at CVs, arranging interviews, emails etc.

 Being prescribed medication is also far from straightforward. Recently for whatever reason I’ve had to move pharmacy a few times and that’s a total headache to sort out especially as my prescriptions are a bit complex plus I have them organised into medication trays made up by the pharmacy for me. Changing pharmacy means re-registering with the new pharmacy; informing my GP practice; getting my medication tray set up correctly, getting it delivered on time and more. Then once I’m with a pharmacy there are the phone calls to ensure my medication gets delivered to me on time especially if I have an appointment on my usual delivery day and asking for additional prescriptions such as antibiotics to be delivered to me as well as ensuring I don’t run out of medication. I also have to remember to order certain medications, some the pharmacy do for me but my ‘as needed’ medication I have to email my GP practice to order and I have to remember to do that before the medication runs out which isn’t always easy.

Managing my appointments can also be a task and a half. I have to either fit them into when my PA can take me, or alternatively book them after my PA has finished work depending on the appointment type. Appointments are also a challenge when you have an energy limiting illness as they’re exhausting and cause Post Exertion Malaise to develop as a result from doing the appointment. I try to just do one appointment a week to manage my PEM but that’s not always possible. I also have ways to manage the PEM around appointments such as resting before and after the appointment, using mobility aids like my wheelchair, taking notes, doing video or telephone appointments where possible instead and so on. Then there are appointments to make such as GP appointments, community nurse visits, therapy sessions to book and specialist referral appointments to chase up too as well as see where I am on waiting lists for appointments like community physio or neurology.

Then there’s my PIP (disability benefits to help cover the extra costs). I’m dreading when the time comes for that to be reassessed; filling in the paperwork; getting supporting evidence; the assessment. I have the same with my Universal Credit; occasionally having that assessed and trying to gain evidence that I need a telephone or home assessment and the rigour of the assessment process; trying to prove your disability and inability to work (when you desperately wish you were well enough to work) and the feelings of the stigma that comes with being out of work and on benefits. 

Then there’s managing the illnesses themselves. That in itself is a full-time job. Managing and staying on top of the symptoms which can often have a domino effect on each other. Treating symptoms when they occur. Looking out for warning signs like low blood pressure or tachycardia. Ensuring I get enough rest, sleep, hydration etc. Keeping my mental health in check. Remembering to take my medication; stay ahead of the pain. 

As well, doing all this work can exacerbate my symptoms and worsen my health. Like I mentioned going to appointments can cause Post Exertion Malaise but even the time spent talking or emailing can be just as challenging and can bring on PEM too especially if I’m already having a wobbly day or I don’t pace myself well enough with tasks but even with well managed pacing I can still be left exhausted and with exacerbated symptoms feeling flat out in bed. That’s one of the big challenges with having an energy limiting illness, you have to do all this work despite my lack of energy to do it.

Then there’s all the in between work of this full-time job. Such as ordering replacement disability aids; contacting places to get equipment fixed such as if there’s a fault with my mattress or Batec; making repairs to my wheelchair (if it’s something I can do), if not calling to get that fixed; finding a new cleaner (something I’m currently doing); ordering supplements; logging symptoms in my bullet journal; doing my catheter maintenance; ordering medical supplies; organising and putting away medical supplies; getting PPE for my PAs and any other miscellaneous emails or telephone calls that need making - the list goes on!

Now do you see how much of a full time job it is to be disabled or chronically ill? Plus amongst all that I have to find time for myself as well as do some house jobs (but most of house jobs I leave to my PAs/carers to do to save me some energy). 

Also if I’m having a bad day it’s almost impossible for me to get admin tasks done as I have to prioritise resting in bed as talking on the phone is often exhausting and I’m limited with what I can do and I have to reschedule appointments especially ones I have to leave the house for. This is why trying to rest before appointments and limiting the number of appointments is so important but I can’t schedule my bad days and with M.E. should I completely crash everything comes to a halt and there’s nothing I can do; all I can do is try to prevent myself from getting to a point where my body does crash so that I can do my unpaid full-time job. A job I never asked for or signed up to but one I must do.

I also try to schedule mental health days every so often where I try to put my full-time job aside as much as possible and do things for myself. Or even if I’m just having a day where I’m doing a lot of work for myself job I try to schedule a moment to breathe by sitting with a hot drink and reading my book for a bit. This just gives me a break from being surrounded by illness as I live with my chronic illnesses and have to deal with them 24/7/365 and then on top of that I have my medical full-time job, so escaping into a book or craft project gives me some much needed respite.