Disability Pride Month

Throughout the month of July Disablity Pride Month is celebrated. Unfortunately it doesn’t get the same coverage as the LGBTQ+ Pride Month; very few organisations change their logo to the Disability Pride flag and their isn’t the same sold merch. 

Disability Pride aims to celebrate the identities, achievements, and culture among the disabled community. There is also more of a push to promote inclusion and accessibility and well as reducing ablism and disability hate crime. Disability Pride Month came about in commemoration of the signing of  the Americans With Disabilities Act (ADA) which was passed on July 26th 1990.

So what does Disability Pride mean to me?

Disability Pride Month means a lot to me to as it allows me to celebrate my disability identity. It took me a while to identify as ‘disabled’. Initially I just saw myself as chronically ill then as time went on and understood the definition of what ‘disabled’ meant I began to relate to the idea that I was also disabled. Slowly more and more I referred to myself as being disabled and having disabilities. 

I’m not only dis-abled by my illnesses but I’m also dis-abled in society too. Such as lack of wheelchair access, cafés not providing allergy friendly food and drink options, places not having an accessible bathroom or Changing Places, no closed captions, plus the expense of being disabled, and difficulty getting access to specialist services in the NHS, poor care from care agencies are all dis-abling things (and more) I face multiple time a day.

This is why Disability Pride is important to me as it brings the disabled community together and we can highlight the issues we are facing. It means a lot to see disability being celebrated and I’d love to take part in some of the events to show able bodied people that disability comes in all forms and that we are proud to be disabled. Plus that we won’t tolerate the ableism, hate crime, lack of access, lack of inclusion and representation etc. I do wish there was more coverage of Disability Pride both on and off line as well as for there to be more events as well as Disability Pride parades in the UK. 

As part of Disability Pride some of the topics I feel need addressing are:

I wish topics like ablism were addressed more including what ablism actually is so people are more aware so incidents of ablism is reduced. Included in this is disability hate crime.

I also wish there was more of a push to improve accessibility into buildings, or at counters, or self-service checkouts as well as better accessibility on websites, autism screening times for adults at cinemas, more signed programs at normal times of the day, more ramps and push button doors and voice activated devices like being able to voice control my kindle. Sometimes I feel like accessibility is a forgotten thought. Or another example may be a shop might get a ramp because they have to but it’s not the right type of ramp for the actual user. (I actually personally have experienced this). Accessible holidays to be the same price and currently when booking somewhere accessible often the price of the holiday increases. And so so so much more that I could add! Included in this I’d like to see more accessible toilets and Changing Places be fitted with RADAR Key access. This means that only holders of RADAR Keys can access the facility and it will prevent accessible toilets having baby change facilities. As well as this it will reduce the misuse of these facilities. I’d also like to see signs saying ‘not all disabilities are visible’ on these facilities doors to help those with invisible needs feels able to use the facility and to not be judged for using the facility. People such as those with stomas, urostomy’s, catheters or conditions like Crohn’s or IBS or maybe someone who needs assistance from a carer when using the bathroom. I’d also like to see more Changing Place facilities too, especially ones with washing facilities and height adjustable sinks.

I’d also like to see more of a push to have more domestic violence refugees and services being made available and accessible to disabled and D/deaf women (and men). A 2025 Sky News report found that less than 1% of refugees were accessible for women who are wheelchair users. An older BBC Investigation in 2018 found around 11% of refugees were accessible so this may include accommodation for other disabilities.

As part of Disability Pride Month I’d also like to see more representation of disability on television. They manage for the Paralympics, so why can’t we have more D/deaf ot limb difference or wheelchair user presenters on television or playing parts not focused on their disability in TV dramas like a wheelchair user detective (I saw one on 24 Hours In Police Custody so they do exist) or even a female D/deaf Doctor Who?!

Not-so-happy Disability Pride Month

Currently in the UK our government wants more disabled people in work. The government are currently in the process of reducing ESA And the UC health element benefits in a bid to try and get more people who are currently out of work back into work. However many workplaces lack the access for a wide range of disabilities, even for those going for an interview. Plus there are few jobs that at flexible working especially from home which is what a lot of disabled people need. On top of that the support scheme to help disabled people in work call ‘Access To Work’ that provides equipment, software, support workers etc. is drastically being cut and taken away from those who need putting them in difficulty to be able to continue working. There is also a long waiting list to be assessed for Access To Work too and there is no guarantee you’ll get the support you need. (Disability Rights UK). More needs to be done to enable disabled people to work in a way that suites them and to have their access and support needs met. 

For those too unwell to work I personally feel the government should be fairly supporting them and not dismissed and be treated unfairly. Disability is the only minority anyone can join at any point. With the current changes our government have made if someone were to become disabled and unable to work in the next few months they will receive far less to live off financially in the UC health element payments compared to current claimants.

My article on Scope writing about what the cost of cuts could mean for me.

As well as this PIP, Personal Independence Payments, which is a non means teasted allowance to help disabled people cover the extra costs they incur. - See my post on some of my extra costs (and it’s grown since then as I’ve bought a £5,000 Batec and a £4,000 wheelchair. However there is a shortfall in in amount disabled households receive and the amount disabled households need. A household with at least one disabled chile or adult with need around £1,095 to live the same standard of living as a non-disabled household and that figure is set to rise. Yet the average amount of PIP a person receives is only £465 so there is a massive shortfall. (Scope: Disability Price Tag Report 2025). The government also are also going to make it harder for new claimants to PIP to be eligible for PIP especially when it comes to the daily living component. (There are two components to PIP: daily living and mobility.)

These changes passed by the UK government came into effect on the 9 July so a Not-So-Happy Disability Pride Month for disabled people in the UK.

Personally it feels harsh as our current government used to stand for the vulnerable and working and lower-class in society. I personally hoped a change in political leadership would be good and much needed for the non-10% in society. The government wanted to make these changes to saves billions and they felt too many people were on sickness benefits. (Well we have just had a global pandemic of course more people will be sick after that). However Liz Kendall, The Secretary of State for Work and Pensions felt people were ‘taking the mickey’ in her words when it came to sickness benefits (you should look at her wage, her husband’s wage, the house the own and then the expenses she claims out of tax payers money - that’s taking the mickey in my opinion). Anyway I feel that there were other ways the government could have saved a few billion pounds, like reducing MP’s wages, reducing the amount they can claim on expenses or stopping this entirely, taxing the well off in society more, going after large corporations that don’t pay their taxes, tacking the crisis we have with people coming here on boats, the about we spend in the Foreign Ministry on other countries sorting them out when our own country is a mess. (When I read Rory Stewart’s book I was shocked at how much the Foreign Ministry spend.) This is all my own opinion of course but I just feel that the government could have chose to do a lot more than target the disabled who are the most vulnerable and most likely to live in poverty (Disability Rights UK).

Book review: ‘The Secret Doctor’ by Dr Max Skittle

How I rated this book: ★ ★ ★ ★ ★ = 5/5!

I haven’t done a book review in quite a while so I thought I’d review one of the latest books I’ve just finished. I listened to this book on Listening Books - you can see my post about free listening libraries here.

Dr Max Skittle is a pseudonym hence the title ‘The Secret Doctor’. Max implies he’s a male doctor and throughout the book he is a male doctor with a wife but who knows Max could be short for Maxine so I won’t assume the author is male or female as I really don’t know.

The book follows the year in the life an inner city GP (General Practitioner) in the UK. The book is in the form of a diary and the author writes about his day to day work and family life. It was quite a humerus book and I enjoyed the funny stories and inner thoughts the author had about their patients. It made me wonder what my GP thinks and makes of me.

For confidentiality the author obviously had to change details about his patients but it was still really interesting and funny, especially some of his regular patients written about or some of the cases that he saw.

As well as the year long diary the author also wrote about their journey into becoming a GP. Deciding to study medicine then medical school. Then the different levels of training and the placements they did once they’d graduated from medical school. Then their decision to become a GP, and their training to become a GP. In all of that are stories of patients and their life. It was quite interesting to hear about all of their training and education and the different specialties they had to experience. I already knew quite a lot but it made me appreciate how throughly experienced UK doctors are and with GP’s the different specialities they have to experience to qualify. So in reality they do have some experience in different specialities despite in their job as a GP dealing with anything and everything.

Another aspect of the book that was interesting was when the author worked as a private GP. It was interesting and sometimes funny the clients he saw when briefly working that particular job. Plus how sometimes money comes before medicine in private healthcare.

The author also writes ongoing in his diary about his home life too with his wife who is pregnant who gave birth to a baby over course of the year in the book. It was funny reading some of the things he wrote about his child, like observations about what babies do and the time they panic bought every type of thermometer there is at the pharmacy. It was also lovely to hear the love the author has for their child and partner in the book too.

At the end of the book the author also gave a really good overview of the COVID pandemic and the effect this had on them as a GP and also wider on the UK’s National Health Service and also on a more global scale. He gave a good tribute to key workers in the UK and those who had to shield because of their vulnerability to COVID and the effects lockdown had on country as a whole. It was interesting to hear how the author had to work as a GP during pandemic and how things changed such as what patients were making appointments for during the pandemic.

As you probably guessed from the rating I gave this book I throughly enjoyed it and would highly recommend it. 

I do quite like books that are true life accounts of different people’s life’s and professions from healthcare workers in all settings including one book the was a doctor who worked at an airport, prison staff including prison teachers, showbiz reporters, taxi drivers, police officers and more. It’s a book genre I find quite interesting among other book genres.

‘The Secret Doctor’ was previously titled ‘The Secret GP’ so if you’re looking for it you may need to search for it under this title (it’s titled this on Amazon). It is also available on Audible if you want to listen to it, but do check out Listening Books and see if you’re eligible to join. As well it’s also available to buy on Kindle and as a physical copy.

It’s my birthday!

So this week I turned 32 (though still people think I’m in my 20’s).

Every year feels like something I’m grateful for because of my health and disabilities. It also brings some sadness that I’m still in this situation with my health and I’m not out there doing the dream things I wish I’d rather be able to do. However I’m still so hugely grateful for many things though and this is what I try to focus on around the time of my birthday.

Making pancakes!

I try to make my birthday as special as possible with lots of little acts of self-care. Like when I had my bath I used my favourite skincare products and gave myself a mini facial. I also got out my favourite Lush Snow Fairy shower gel. I put on some makeup too which always makes me feel brighter. For my tea I decided I wanted pancakes as a treat. I wanted to be in on the action so I made the mixture myself and helped my PA make them. (Unfortunately I enjoyed them too much to take a photo of them!)

I received some lovely and very thoughtful cards gifts from family, friends and my PAs. This really made my day and filled me with love and gratitude to see people knowing me so well and just the kindness that went into choosing or making things for me. Knowing I love my garden, handmade gifts, my need for low-energy activities, that I love crafts Moomins and pjs,, a voucher towards a facial or something and lots of other lovely things. It’s lovely to look at my cards too that I’ve put up and know that people have wanted to send me a card to celebrate my birthday.

As well on another day I went to my Dad’s and stepmum’s and the three of us ate tea and played a game which is something we collectively enjoy doing together. I won the game which really surprised me as normally I don’t win at games.

So yes birthdays can bring difficult emotions for me. Difficult memories and thoughts of more illness ahead of me especially at the moment as I’m living with undiagnosed symptoms that I can’t get answers for that are really affecting me and not knowing the outcome. However on the bright side my 32rd year has so many positives. 

• I have my own home that is amazing both inside and outside; quite literally, as Dad has made my garden so lovely for me.
• I now have a wheelchair that meets my needs and my Batec that gives me freedom and independence. 
• I have some amazing friends and pen pals. 
• I have an amazing family. 
• I have a new amazing PA now so my care situation has really improved. Hopefully in my 32nd year I’ll get a full PA team - how amazing would that be! 
• I’m also now under a specialist M.E. team at UCLH (my first appointment is in October and I was only referred in February!) Maybe I’ll also from them start to get answers or referrals to get closer to working out my undiagnosed symptoms.
• I’m doing really well at my declutterring and organising of my home plus my no spend project I start this year. I also want to start a project pan too at some point too!

That’s quite a list of positives! There are so many reasons to be happy this year going forward despite the difficulties and everything. Focusing on the positives help get me through the difficult times. I’m not one of those people who lets my health beat me down no matter how bad things get. Yes sometimes I have a bit of a cry but don’t we all, illness or no illness. We all have things in our live that challenge us.

Birthday’s are a time of the year where we can look back on the year we’ve just had. We can see how far we’ve come, what we’ve accomplished and survived etc. and what we have to come in the year ahead both positive and challenging. Just deal with one day at a time and remember to breathe. Embrace every day as it’s a gift as we never know what is to come.

Why mail is so important to me

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.

My experience of EDS and physiotherapy - EDS Awareness Month

Navigating physiotherapy when you have Ehlers-Danlos Syndrome or and other hypermobility disorders can be difficult.

EDS is basically a hereditary connective tissue disorder. There are thirteen types, hypermobile EDS being one of them (this is the type I have with a few traits of vascular). EDS is a rare condition and it affects everyone differently in terms of severity and symptoms. This includes what secondary conditions that person may develop as a result of their EDS. Connective tissue supports organs and holds parts of your body in place. Connective tissue is made of two proteins: collagen and elastin. In EDS it affects the production of collagen in the body.

 The problems my EDS causes me when it comes to physiotherapy is that I have to be mindful and careful to avoid causing a joint to sublux (partially dislocating) or to fully dislocate.

There’s an EDS joke ‘my joints go out more than I do!’

The other problem my EDS causes, which is secondary to my EDS is dysautonomia which is problems with my body’s autonomic functions. Anything from temperature control to heart rate. One dysautonomia condition I have is POTS (Postural Orthostatic Tachycardia Syndrome) - about POTS. So because of my POTS and dysautonomia my heart rate can get abnormally high, I can also easily get dizzy and lightheaded brought on by the exertion of doing my physio. Even though it’s not strenuous exercise it is for me especially in combination with my M.E.

In the past I’ve had specific EDS physiotherapy other times I’ve just have physio that is rhumatology, for chronic pain or just generic. (Yes I’ve had lots of physio over my lifetime!)

Sometimes it can be helpful to speak with your physiotherapist about EDS so they understand it better so they can know best how to treat you especially if they’ve had no experience of EDS before.

Some of the things I do to mange my EDS when doing my physio is:

• Doing my physio laid down either in bed or on a yoga mat.
• I’m unable to do strenuous exercise so doing gentle movements work really well for my EDS. I do this guided by a physiotherapist who has given me exercises she knows I’m able to do.
• Listening to my body is key, if I feel I’m going too far I stop before I sublux or dislocate.
• I find doing a few movements two or three times a day is better than one big session.
• Keeping an eye on my heart rate is really important. If I feel my heart rate getting too high or I feel dizzy I’ll stop. I might check it just to be safe especially if I’m also feeling dizzy. If needed I’ll lay down with my legs elevated until I feel safe enough to sit up and get into my wheelchair. This is one reason why doing my physio in bed or on the floor is safer.
• I’d also ensure I have my phone with me and I’m wearing my CareLink just in case I become unwell or need medical help.
• Having water with me I find is helpful too.
• I also do my physio at times of day when my EDS symptoms are most stable.

I find it important to keep up doing my physio every day even on my not-so-great days. On those days I’ll just do a couple of reps of a couple of really gentle movements. Then on my better days I’ll aim to do more of what I’m able to do. I find keeping it up everyday helps to keep my body moving and keep my body in good condition. It also helps keep up the progress I’m making too.

Other things physiotherapists have done for me and my EDS in the past is have been to fit me with orthotics to go in my shoes. My EDS causes me to be very flat footed, a common problem for people with EDS. My shoe orthotics help correct this and in turn I’ve found they really relieve my knee and hip pain.

My CMC thumb brace

Physiotherapist’s and specialist orthotist’s have fitted me with other splints and braces for various parts of my body (I now have quite a collection of them!). From CMC thumb braces for both hands, splints for both left and right wrist plus one that also splints my thumb, a hinged knee brace, a patella brace and an elbow brace!

I’ve also been advised on other splints particularly ring splints but I haven’t gotten around to measuring my fingers and purchasing them. The physio who advised me to get them couldn’t get me referred to be fitted for ring splints on the NHS, she just advised me to get them from somewhere like Etsy and named a few shops on Etsy and other online shops to me. I haven’t gotten round to buying them yet mostly due to having to get the precious measurements of my fingers for ordering them and trying to find the lowest cost but good quality one. Silver ring splints are better but quite expensive especially when I need to buy a few even though I know they’ll benefit me.

Also with EDS and splints and braces the question is when to splint and brace and when not to. I’ve had some orthotist’s advice me to wear my brace all the time like when he fitted my knee brace. The problem is though is when you brace the joint becomes weaker as it’s being supported. Some professionals tell me just to splint and brace when needed. Generally for me there are some braces I usually wear all the time like my CMC thumb braces because of how lax my thumb joint is and how often those joints sublux and dislocate. Probably because I use my hands so much like writing and pushing my chair. Other splints and braces I’ll just wear when needed like after a dislocation, or if a joint feels weak or painful and needs some additional support. I’ll also put a splint or brace on if I’m going to be doing a particular task where I know the joint needs to be supported to help avoid injury like a subluxation or dislocation or to help reduce pain and strain.

Blue is better than beige!

Some braces and splits over the I've have to replace myself as they’ve worn out or I just can’t get on the NHS. On these occasions if the option is there I like to opt for something a bit jazzier than NHS greyige. (Most NHS things are grey or beige.) In my view if you have to wear it you may as well let it express who you are just like I do with my mobility aids.

I also use mobility aids partly because of my EDS so physiotherapist’s have ensured that they fit me correctly especially as I’ve always bought my own funkier looking walking stick and crutches than the boring grey NHS ones. It was actually one of my physios who suggested I switch from using a walking stick to a crutch for more stability and support. From there a physio moved me onto walking with two crutches as my mobility declined. My latest physio could see me in my wheelchair and how much that benefitted me. So physiotherapist’s have been really key for me when it comes to my use of mobility aids over the years.

Links

• The Ehlers-Danlos Society - Physical Therapy
  
• Hypermobility splint leaflet
  
• POTS UK
  

What exhaustion really feels like

Many people think that M.E. is about ‘just feeling extra tired’ but the reality it that the fatigue with M.E. goes way beyond feeling tired. Also fatigue isn’t the most prominent symptom of M.E.; most people with M.E. find Post Exertion Malaise to be the more problematic symptom. (Among many other symptoms.)

Exertion does just come from doing physical activities, it could include exertion from cognitive activities other things too. Things like talking, reading, writing part of a blog post or pen pal letter, listening to an audiobook, watching a TV program, doing some crafting etc. Other extortions that can trigger it are sensory like light, especially artificial light I personally find, sound or even spending too much time sat upright.

Here is an example…

An example of an exertion I find incredibly difficult and try to limit to only when essentially needed is hospital appointments. Most of my appointments are done of the phone and just the talking is often very exhausting. Going in person to a hospital appointment is a whole other thing.

I have to schedule my appointments to be at a time when my PA is able to take me as I’m unable to take myself. I could use patient transport but it’s not time specific plus so I get to and from my appointment much quicker with my PA. Plus I need my PA to be there with me in case I become unwell like times I’ve had seizures and my PA is able to deal with them saving me a trip to the Emergency Department. (The exertion often triggers my seizures too).

I find the noise and artificial lights in the hospital challenging on my energy levels and the anxiety adds to my fatigue too.

Then there is the appointment itself having to listen to the doctor and take in what they are saying to me as well as taking back to the doctor answering their questions that uses up my cognitive energy. 

Then I might be sent for tests. The doctor might want me to have bloods taken or for me to have an ECG. I’ll try to request these to be done at home rather than and there after my appointment. I’ll also have to go to reception and book my next appointment and request this as a telephone unless I need to be seen again in person for another appointment or procedure.

My wheelchair helps make things less exhausting plus I’ll always have a seat to sit down on. - Hospitals just never seem to have enough blue badge spaces or even parking spaces full stop. It’s quite easy to glide around once I’m in the hospital.

Then my PA has to get me and my wheelchair home. I’m usually feeling crashed so I’ll settle in bed as soon as I get home.

After all that exertion and now I’m extremely fatigued and will be feeling crashed out and will experience Post Exertion Malaise as a result. This could last days, a week or even weeks and to what severity I don’t know.

Sometimes the when I get PEM the cause feels worth it, like spending time with my Dad, other times it feels a frustration and not worth the PEM especially as PEM makes me feel so awful.

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What exhaustion feels like

The reality of exhaustion and PEM

I feel exhausted all the time. I wake up feeling exhausted like I haven’t slept. Sometimes I have insomnia because I’m too tired to sleep. It’s like I have a weighted blanket over me and everything goes in slow motion and I can’t focus because of the brain fog.

It then makes doing tasks difficult as I start the task feeling exhausted so I easily over-exert myself. 

I feel like I’m in a perpetual cycle of PEM and exhaustion as once I’m over the PEM of exerting myself over doing one thing it’s not long before I’m exerting myself over something else causing exhaustion and myself to experience PEM again.

Initially I’ll feel the payback and crash, which will turn into PEM. I won’t know severe my symptoms will be (so what extra care I’ll need), how severe my symptoms will become or how long the crash and PEM will last for.

With exertion it’s like walking on a tightrope to not overdo it. The smallest amount of doing too much will push my body over the edge and cause me to develop PEM. Even simple things like speeding too much time reading or writing a letter to a friend, holding a telephone or zoom appointment for an hour, or sitting upright for too long on some days can tip me over the edge. Forget going out the house and the great deal of PEM that causes me.

I try to pace myself; not ‘boom and bust’. Have regular rest periods, traffic light system my to do list etc. I try to do all the right things to try and lessen to PEM and payback. It really is so hard to navigate doing this on my own and now I’m under an M.E. Service I hope they can help me not to ‘boom and bust’ so much and reduce my PEM and constant feelings of exhaustion.

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What I’m like when I’m experiencing exhaustion and PEM

At my very worst I can be unable to move or speak. I cannot tolerate light or sound (so I’m unable to listen to my audiobook for company), I struggle with strong scents like perfume and I struggle being touched. Even the movement of my air mattress can be difficult to tolerate. Even carers banging my bed can be painful. Sudden sounds like my carers phone getting an alert are also hard to tolerate. All personal care has to be done by my carer and I need assistance with drinking and eating. I do find my hydrate bottle helpful as I can drink hands free. It’s also difficult as I have to wait for my carer to arrive to give me pain relief.

Usually however I am able to move and get myself comfortable in bed. I may be able to get pain relief but sometimes I still have to wait for a carer to do it for me, so that’s something that varies. I can talk but voices have to be get at a low volume and conversation is kept it a minimum. I am able to listen to my audiobook or a podcast for company; I prefer to listen on my noise cancelling headphones (I do this normally anyway). Television programs or YouTube videos are usually something I find too sensory overwhelming so can’t tolerate this type of entertainment. I usually have soft low lighting on in my bedroom and keep it to a minimum. Things like fairy lights or my mushroom lamp. Sudden sounds are still difficult. I still need full help with my personal care so I don’t tire myself out. I can usually manage drinks independently. I might need help eating, I’ll still stick to soft food that is easier to eat and I’ll have my food cut up small so I can just eat with my adaptive spoon. I still find my hydrate bottle really helpful as it means I don’t have to lift heavy bottles.

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What are some of my symptoms?

For me M.E. is a neuro-immune illness so when I’m more unwell my immune system flares-up and I experience flu-like symptoms.

I also find my body is harder to co-ordinate and my arms and legs feel like they have weights on them. My muscles are also weaker and my muscles tremor more too. I’m also more unsteady and I have more falls and I find it harder to transfer into my wheelchair. - This is where having my new wheelchair is helpful. It’s lightweight so easy to move around in and I use it around my home when I’m able to get out of bed.

I get overwhelmingly fatigued to the point where I can’t focus my brain or my eyes and I feel drunk.

My PoTS and Orthostatic Intolerance worsens so I’m more dizzy and lightheaded and I have to lay down more and tilt my bed. My heart rate is higher even and my blood pressure lower even when resting. I’m more at risk of passing out too.

I find when I’m tired I’m more cold even when the weather is nice outside.

Brain fog is a big symptom for me. My cognitive function is really affected I get easily confused and forgetful. It’s like my mind is puzzle pieces that I can’t fit together, that’s what brain fog feels like. Another way to describe it is like trying to move through sinking sand. I struggle to focus my eyes too sometimes.

Like I put above sometimes I’m unable to speak. Other more commonly my speech will becomes slurred, or have difficulty finding words. I often sound drunk when I’m very exhausted. I’ll often use the BSL signs to aid my communication when I’m around people who understand my BSL/SSE and I use communication cards too.

My sleep will also be affected too. Despite the debilitating fatigue during the day at night I’ll struggle with insomnia. I did a group session on sleep for people with chronic pain that was helpful and I hope the M.E. Service can help with this. Currently I put my insomnia down to not having the energy to sleep, but that’s just my guesswork but insomnia is common in people with M.E.

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So as you can see there is a lot more to fatigue and exhaustion than ‘just feeling tired’ and what PEM is like. Fatigue, exhaustion and PEM can be so debilitating and the hardest aspect I find is the unpredictability with it. Not knowing when I’ll get these symptoms as one moment I can be relatively okay and then a JCB truck can dump a load of exhaustion on me and I can struggle to function. Or I can do something and then I’m hit with PEM that I have no idea how long it will hang around for until I’m back to my usual self. Or after severe long periods I’m left wondering ‘is this my new normal now?’ It’s so incredibly isolating too especially when I don’t know what the right thing or the wrong thing is to do. So let’s just hope for this M.E. Service and they can offer me some advice and guidance and hopefully some things to lessen the severity of my PEM sometimes. I’m even hoping there will be a group session where I can meet others with M.E. too.

FOMO, chronic illness and social media

You’ve probably all heard of the term ‘FOMO’:

“FOMO, short for "Fear Of Missing Out," is the anxiety or apprehension felt when someone worries about being excluded from or missing out on a rewarding social experience. It's often linked to the constant exposure to social media and the perception that others are having more fun or living better lives.”

However for me FOMO isn’t the Fear but the Feeling Of Missing Out because I literally am missing out. I don’t have the capability to go off and try out and join in and engage and experience what I fear I might be missing out on. Sometimes I feel trapped by my disabilities so seeing people on social media, especially those with the same physical disabilities as mine, seeing posts of this people doing what I saw as ‘really awesome things’, things that I’d love to be doing brought on those serious Feelings Of Missing Out.

FOMO, disability, social media and me

I used to follow a lot of disability content creators especially on Instagram and YouTube because I wanted to follow people like me who I could relate to as they had the same or similar disabilities as me. I just wanted to find young chronically ill and/or disabled people like me as I wanted to find a community where I felt like I belong. Having chronic health problems and disabilities I feel very isolated and I don’t know anyone in person with disabilities too hence why I turned to the online. It was also in some ways supportive especially when I first became ill and then received the names to the illnesses I have.

However I often felt feelings of FOMO when I’d go on social media but I didn’t really recognise the impact it was having on me. I’d see young disabled people with the same illness as me or other disabilities and I felt connected and I could relate to what they were posting about and it helped me in some ways especially early on when I first became unwell. 

However on the flip side especially on Instagram I’d see people’s posts of them on holiday or going on days out or dancing or modelling and doing what I saw as other ‘really awesome stuff’. I’d think to myself ‘I have M.E. and/or EDS too why can’t I do that?!’ or ‘I’d love to travel to the US to do the dance Rollettes too’, or ‘I’d love to go on a day out like’, ‘I wish I could do an opportunity like that’, or ‘I wish I was well enough for an assistance dog’, and so on and so on. Or I’d see posts where people would be filming more of their lives and I wish I could build up my confidence to film more of my life too. Or I’d see them on days out and I’d wish I had the ability to do that too but in my reality my health restricts me to not being able to travel that far away. I could keep going on and on but these are just a few examples of how social media affected me and brought me feelings of FOMO.

I’d also watch a lot of wheelchair ballet and dance content because I missed that from my pre-M.E. life and I loved this particular content creator and she’s done some really fantastic dance opportunities plus modelling which looked so amazing to do. 

My old pointe shoes

I did try an online 1:1 dance session in my wheelchair but it just proved too much for my body. I think ballet is part of my pre-illness life now. Who knows, maybe when my body is in a better place wheelchair dance or ballet could be part of my new life? Maybe I could start by doing some Progressive Ballet Technique to ease me in, but let’s just take things one day at a time.

I realised after a while the effect social media was having on my mental wellbeing. As a result I took a step back from social media because I find the FOMO so unsetting, frustrating and overwhelming. I wasn’t jealous I just felt frustrated because of the limitations put upon me by my disabilities and also because of the lack of opportunities to do things locally. For example where I live there’s no opportunity to do wheelchair sports or dance and we’re not close to any cities and the things living somewhere bigger offers like museums, art galleries, expo events etc. and we don’t have any National Trust or many similar places nearby or places where say I could hire an off-road mobility scooter and go rambling in the outdoors. Me as a person I love to be active and I love the outdoors and I love visiting new places (when it’s quiet and not busy).

I’m now had a sort out over who I follow, especially on Instagram. I now don’t follow the accounts that bring on feelings of FOMO, or if I find something too much but I still want to follow them I might restrict them so their posts don’t pop up on my feed. I also find I spend less time on social media too; I can even go days without going on the apps.

I also have to remind myself that social media posts are just a small snapshot, a highlight of someone’s life. You don’t see what is going on before or after that photo or video was taken and shared, just like people don’t see the bigger snapshot around my posts. That disabled content creator might have a milder form of M.E. than me and therefore is able to do more. As well they might still really struggle with payback after doing that day out they’ve posted a film of. They might still be in pain while they’re filming or they’ve saved up all their energy to film that post. Or especially with influencers they probably have paid to help them do their content. We just show what we want to show on social media. You don’t know what goes on behind the scenes.

People might even feel FOMO about me wishing they had a Batec too or a wheelchair like mine, who knows?! 

I think what is also important to do and I was reminded of this today is when I see a post that might make me feel ‘megh’ is to actually be happy for that person. Happy that they enjoy the freedom of dance too, or happy that they a really enjoyable day out or holiday or happy for them that they enjoyed going to see a musical or seeing friends. These people are showing these snapshots and moments of their life on their social media because it’s meaningful to them and they want to capture that moment as it’s special to them and they want to share it (unless they’re being paid to the post obviously).

I’m now selective over what I post and I only like to post the positive things. Sometimes I wish I could post more of the reality of my life like I see other people do but I haven’t had the confidence to do that yet and I don’t want to delve into the toxicity of chronic illness on social media (which is a post for another day).

I also have my personal social media for myself. Snapshots of my life I want to share with people but more importantly a timeline for myself to look back upon. Reminders of special memories, moments I want to hold onto or a catalog of things I made and things like a timeline of home and garden and what I’m doing and changing as time goes on.

Celebrating little wins

I just wanted to come on here to celebrate some wins with you.

The first is that I’ve now been living on my own for two years now (and 3 days) - this is coming from someone who never thought they could manage living alone.

There are still many challenges and it’s not easy with my health and care situation but I’m thriving living alone. I love living alone and having my own personal space and being able to make decisions about my own how like what laundry products to use, what I put in my shopping basket, or what cleaning products I use. Little things like that mean a lot to me. I love how I’ve slowly decorated my bungalow more it more and more ‘me’. It truly feels like home.

My second little celebration is the process I’ve made over the past few months with my physiotherapist and today and today she felt I was really to be discharged. I’ll feel sad not seeing her but it’s one less appointment to keep putting in my bullet journal.

It’s been so helpful having home physio and having it 1:1 really helped too. My walking is very unsteady but that has slightly improved and I also now have my new wheelchair to use around the house to reduce my falls. My muscle weakness in my legs is still there and I still struggle but there has been a slight improvement. My upper body is better too; we worked on that to help enable me to push my wheelchair. One of the biggest things that my physio introduced me to was a resistance band (it’s yellow and smells like bananas and custard!) Anyway I’m doing well with that and today my physio said that she never thought she’d ever think of giving me a resistance band when we first started! 

I’ve built physio into my daily routine. Some days I’ll do more other days I’ll do less but every day I aim to move my body a little. I do have to listen to my body and stop before I tire out or cause a subluxation or dislocation. (I plan to do a blog post on physiotherapy with EDS). I feel this experience of physio has been much more positive than my last experience. That was when I was make to do GET Graded Exercise Therapy which at the time was on the NICE Guidelines as a treatment for M.E. I feel GET really contributed to the decline in my M.E. and I’m so glad it’s no longer a recommended treatment by NICE. 

On the lines of M.E. I’m now finally under an M.E. Specialist Service!

For a long time I have wanted and needed specialist support and my GP has been trying so hard to get me under a service. We don’t have our own local service and the many services my GP tried they either didn’t take out of area patients or there wasn’t the funding for out of area patients like myself. Finally however I’ve been accepted by a service and my first appointment with them is a telephone appointment in October so not even a long wait to be seen. They are a long way from home and I do imagine they may want to see me in person at times so I’ll have to wait and see and work things out when that happens. But yay finally! I feel heard and I don’t feel so alone now and it’ll be good to speak with professionals who ‘get it’ maybe other patients with M.E. too?

Something positive out of M.E. Awareness Month.

My final win to celebrate is my wheelchair.

I’ve had my GTM Mustang just over 2 months now and it’s really changed my life for the better. I’m able to use it around my bungalow as well as on the occasions I go out and it’s given me freedom and independence and safety and it’s really improved my quality of life too.

I love the accessories on it, especially my LapStacker. That’s been a true game changer! My wheelchair is just more ‘me’ and it meets my needs been too compared to my previous NHS wheelchair. It’s just so light and easy to use and transport too.

I just wish I got push up/down handles but at the time I thought my backrest would be too low for handles. Handles was something I did want to discuss with the Wheelchair OT’s but that appointment was a whole other disaster. But it helped to hear recently on Instagram that Gem (@wheelsnoheels) has regrets about some of the things she wish she’d put on her GTM Jaguar chair which outwardly she loves and is the best chair she’s ever had! So that made me feel like it’s not just me.

Living alone for two years now! The ups and downs of living with M.E.

Today is M.E. Awareness Day (though every day should be an awareness day). As well as this exactly two years ago today I moved into my very own bungalow. Over the past two years this bungalow has been turned into my home and my sanctuary. It has been adapted for my needs as well as being decorated to make it more ‘me’. I’m really excited to continually make more changes to my home and I’m so excited for what’s in store for my garden too.

I really still can’t believe I’ve made it two years. There was a point when I didn’t think I’d be able to live on my own. I definitely couldn’t have done the process without my housing support workers. However over time I’ve just found ways to make it work for me and I much prefer having my own home compared to living at my Dad’s. I do feel very fortunate to have my own home at my age as I know many people my age are still struggling to get their first home.

I love having my own space to escape to. I like my quiet times in the day when I don’t have a carer. I enjoy cosy mornings in bed with a book and cup of tea or coffee or sat at my craft desk organising my bullet journal or crafting, or laid in bed with an audiobook or podcast. I love having my home decorated how I want it decorated. I also like putting in the laundry what products I want to put in my laundry. Or having a wide selection of bath products for my morning bath so I can smell something different each day plus what cleaning products I use too. Just all the decisions being my own I love being they’re my decisions about how I live my life. I think it gives me back some control. Those little things make living on my own a big thing.

Living alone with Severe M.E. among other conditions however isn’t easy at all. I’m reliant in my care team of PA’s, carers and nurses as well as other professionals like my GP and the community physiotherapist and Occupational Therapist for my care. I often wish I didn’t need care but in the odd occasions when I’m left without care I realise how much I need my PA’s and carers. I think It’s especially hard being young(ish) and needing care too?

One of the hardest aspects I find about living with M.E. is the unpredictability. I never know if I’m going to have a good or bad or an in-between day and that can all change quite quickly. I can be fine sat doing an activity and suddenly I’m overwhelmed with exhaustion, pain, hypersensitivity, dysautonomia symptoms etc. and soon I’ve overdone it and I’ve gone boom and bust and I’m dealing with the payback. Or I might do something and experience Post Exertion Malaise, from which I might crash.

Crashes are when symptoms become significantly worse. They can last a day, a few days, a week, a month or even longer you never know you just have to take it step by step. Even when you aren’t crashed and you’re resting when you have Severe M.E my symptoms are still very much there. 

I find resting doesn’t restore my energy, it just allows my body to just stop for a short while. I don’t even wake up feeling refreshed. People often associate M.E. with fatigue and while fatigue is a big symptom and a difficult one (I get tired of being tired) PEM is probably the more pressing symptom. After every activity I do I’ll experience some kind of PEM. This comes with a whole host of different symptoms but as the name suggests Post Exertion it really means the smallest exertion can trigger PEM. It can vary in severity like with crashes and you don’t know how bad the PEM will be, what symptoms you’ll experience, or how long it will last for. PEM can trigger a crash too.

Crashes or bad days are hard because I live alone as I might not be able to get pain relief until my carer arrives for example. I also can’t get up to fetch something I need. I have tried to set up my bed area as best I can to make it as easy as possible for when I’m in bed or for when I find I can’t get out of bed. I do also have my emergency CareLink and thankfully my Dad doesn’t live far away either.

I have lots of aids to help me be independent and to make tasks easier. For example I have my hydrate bottle that attaches to my bed with a long straw so I can drink hands free in case I find can’t lift a bottle. It also really helps now with my new wheelchair that I can use it to get around inside. I also have my Flexzi that goes on my bed rail so I can use my iPad hands free in any position when sat up or laid down when I’m in bed. Or my nible that helps me open things so easily. My aids literally help me so much in so many different ways and I have too many to list here!

I think I’ve just proven to myself that I can make living on my own work and I will have the inevitable wobbles. We all have our own life wobbles whether that be about out our career, or debt, or relationship issues etc, For me my wobble is my health.

There is always a solution. Like when I found I couldn’t manage the cleaning I employed a cleaner an extra costs like this are what my disability payments are there for to enable me to live my live and not struggle with the extra costs I have because of my disability.

I feel so proud of myself for how far I’ve come over the last few years. I’ve made living with chronic illnesses and disabilities work despite the challenges and wobbles.

I feel the word to describe my life living independently is thriving! I truly feel that I am thriving living on my own. I’ve gained so much more confidence in my ability to live independently despite the wobbles and many challenges I face daily. I’m still here, I’m finding ways to live here and I hope to live here for some time. - Mostly because the decor is so ‘me’ and because of the adaptations plus I’m just so happy living here too. 

Resources 

• Read more about M.E.
• ‘Severe M.E.: A Guide To Living’ by Emily Collingridge - a great book that I’d highly recommended 
• Post Exertion Malaise
  
• ‘M.E. & Me’ - short documentary, BBC Three - definitely worth a watch 
  

Broken batteries: Living with M.E. and EDS

May is both M.E. and Ehlers-Danlos Syndrome Awareness Month! (Though awareness should be all year round).

It’s incredibly hard to put into words to reality of living with M.E. and EDS, especially both conditions together. Both conditions come with a lot of chronic fatigue either because of the fatigue itself or other symptoms triggering me to feel tired like being in constant pain as well as medication side effects making me feel tired out. It also doesn’t help when symptoms keep me up at night meaning I don’t have refreshed sleep. Then during the day my batteries are constantly feeling drained so I’m feeling exhausted all day no matter how much I rest and take it slow.

M.E. and me

I became unwell after a bad case of the flu around February 2012 but I wasn’t diagnosed with M.E. until July 2017.

Living without a diagnosis was so incredibly difficult. I didn’t know why I couldn’t snap out of being tired and why no matter how much I rested my batteries were still broken or other symptoms that I experienced too that I couldn’t explain to other people nor myself.

My GP kept telling me I had Post Viral Fatigue Syndrome and with rest I’d soon be well again. I’d rest but I’d never feel better each time I was told I had PVFS. I felt so incredibly frustrated with myself and my broken batteries.

Once I was diagnosed I was able to stop blaming myself for things like why I felt so exhausted all the time or why my batteries wouldn’t ever fully recharge. Alongside all my other unexplained symptoms.

Back then my M.E. was moderate but over time in particular in 2018/2019 my M.E. slowly declined and my M.E. became Severe. Being made to do Graded Exercise Therapy also contributed to my decline.

Today my M.E. is still Severe. I had good and bad days but I’m struggling to manage it. I’m hoping I can get a referral to a specialist service but it’s proving hard as there’s no service in my area and it’s trying to find a service that will take out of area patients.

Around 1 in 4 people with M.E. will have Severe or Very Severe M.E.

M.E. is basically a neuro-immune illness that’s multi systemic meaning that it affects lots of different aspects of the body. - Read ‘What is M.E.?’

EDS and me

My EDS was picked up when my neurologist assessed me for M.E. He referred me to an EDS specialist rheumatologist.

There are 13 types of EDS; initially the consultant thought I might have Vascular EDS so I was sent for genetic testing but I didn’t have all the markers so I was diagnosed with Hypermobile EDS but I do still have some traits of vEDS.

EDS is a hereditary connective tissue disorder, so I was born with it. When I got diagnosed it was like joining the dots of all the injuries I had as a child and being good at doing ballet and yoga and having a spinal curvature too. I could see signs of me having it all my life but it was always just dismissed by doctors as ‘growing pains’.

hEDS is more than ‘just being bendy’, yes you are hypermobile but the faulty collagen than makes up most of your body causes other issues too. Joints that easily sublux and dislocate, problems with the functioning of organs, dysautonomia (also a symptom of M.E.), dental problems, pain, fatigue, easy bruising, poor healing, difficult IV access, digestive problems and more.

Broken batteries 

I use this term because my batteries are broken. I can never fully recharge my batteries even after a good night’s sleep as I still wake up feeling exhausted. Even resting in the day doesn’t recharge my batteries, it just stops my battery drainage for a little while. I also can’t replace my broken batteries either for new shiny fully recharged ones unfortunately. Believe me I have tried so hard to fix my broken batteries with so many different strategies over the years. So, instead, I must just accept that I live with Energy Limiting Illnesses.

I’m fortunate enough to have my own little bungalow that has been adapted for me - read about how my home has been adapted. Some equipment I have is a profiling bed with airflow mattress and a bath lift, these make life and my broken batteries a bit easier to live with.

Having broken batteries doesn’t just affect you physically it affects your mental wellbeing too. You get sick and tired of being sick and tired. Or tired of being tired. Plus because of my broken batteries and other symptoms I spend so much time inside and in bed and that gets to my mental wellbeing too. My Batec gives me freedom when I’m having a day when I have the energy to go out and it really helps my mental wellbeing. My Batec is also a great boost for my batteries as it reduces my battery usage compared to pushing my chair and it allows me to go places I can’t push myself or on days when my batteries are too low to self-propell.

I also use a light weight wheelchair with some customisations to make it easier to push as my broken batteries mean I’m not so strong as well as weak shoulders due to my EDS. For example I have gekko grip on my push rims and with my chair being ultra lightweight it makes it much more possible for me to push and these two things make using a manual chair possible for me.

Having broken batteries it’s a constant fine line to manage what little energy I have and to not over do it and for my batteries to completely run out of charge causing me to crash. 

In M.E. language a crash is when you have an exacerbation in symptoms and my batteries are completely broken. I can have a mild crash when I’m just more tired, in more pain, more hypersensitive, I struggle with my speech more because of brain fog and my cognitive function is worse etc. Then I could have a big crash where I cannot move or talk, I’ll need help to drink and eat, I can’t tolerate noise or light at all, not even an audiobook for company. Even the gentle movement of my air mattress is so painful (and with this mattress I don’t even lay on the tubes of air but on memory foam). - This is me at my very worst but I still get times when my batteries are broken and I’m too tired to talk and I just have to lay in bed with an audiobook for company and my pain levels are high and I’m needing more support from my PA/carer to to tasks.

I can also do too much or have bad days with my EDS too meaning I have faulty battery days.

I will admit that I’m not very good at managing my batteries. I easily boom and bust only resting when my batteries are completely dead which doesn’t help with the Post Exertion Malaise and feeling crashed towards the end of the day in the late afternoon and evening.

I do find that my bullet journal helps. I can plan my day and what needs doing and I’ll also write in prompts to rest to do as well during the day. I don’t find resting recharges my batteries but I find just laying and listening to a soundscape just allows my batteries to just stop so I’m able to carry on.

I also find using the traffic light system on my to-do list good too. Green = low level activities, orange = okay activities, red = challenging activities. I find this helpful for managing my battery levels. As I’m not doing lots of red tasks crashing my battery levels but instead I’m balancing my battery life with for example a red task followed by a green task or a rest to ensure I don’t overdo it. - Read about pacing, activity management and rest this information is helpful to anyone with any chronic illness/disability.

I think the idea of broken batteries is relatable to most illness which involve chronic fatigue. I find when I talk about my M.E. and EDS saying my batteries are low is a good explainer for why I’m feeling exhausted. It also makes it more lighthearted and also more understandable than Spoon Theory which a lot of people in the chronic illness community use but people outside this community don’t understand it I’ve found.

Book recommendation 

Lastly I’d love to recommend to you the book “How to do life with a chronic illness” by Pippa Stacey it’s a great read on living with a chronic illness including an Energy Limiting Illness and the book also includes some resources in the form of work sheets that are so so helpful.

This book contains bespoke advice for parts of everyday living that often go unspoken about - from practical advice on friendships, dating, and independent living, to more reflective guidance on rediscovering your identity and learning to self-advocate. Chronic illness affects everybody differently, but we all want to find joy where we can and make the most of what we have. This book exists to help you take accessible steps towards that goal and build a life that truly feels yours.

The book is also available on Kindle and as an audiobook on Audible and Listening Books* 

*which can be accessed for free if eligible.