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
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.
