Sometimes when my M.E is at its worst my body will just ‘shut down’ like a phone out of battery. The other day when I was crashed I was laid in bed and I realised I couldn’t move my left leg; then my right. I could still feel everything, I just lost the ability to move them. The brain and nervous system is fascinating and so much can go wrong and so little is still understood about M.E and severe M.E and why bodies like mine are like they are. I took part in the DecodeME Study and so many of the results made sense and gave me hope.
Sometimes this ‘shut down’ has taken over my whole body. It happened to me once when I was in hospital. The noise and the lights were just too overwhelming, I was in so much pain too and my body just couldn’t process and cope with it all. I could feel and hear everything but I couldn’t verbally communicate. I was locked in my own head. I had no way of explaining to the staff what was happening to me. I can blink or sqeeze a hand: one for yes; two for no but I couldn’t explain this either. The staff didn’t know what I was doing and why I shut down. Some staff thought I was feigning this episode for attention. In my head I was shouting and screaming to explain what was happening to me and to ask things like ‘please turn off the lights and close the door!’ and to tell them how much pain I was in/
This ‘shut down’ is an extreme example but this is the reality of my severe M.E. when my body can’t take on any more pain or sensory stimulation.
Around 1 in 4 people with M.E have severe or very severe M.E. On the M.E Disability Rating Scale I am 70-80%, disabled by M.E, possibly 90% at times. I have good and not-so-good days. Currently I’m in a rolling crash. My M.E worsened at the end of last year from which I’ve not yet recovered from. The smallest exertions (physical, cognitive or emotional) like getting washed and dressed with a lot of help from one of my PA’s or slowly typing this blog post will trigger Post-Exertion Malaise. (An exacerbation in my usual M.E symptoms with some extra symptoms such as these shut down or paralysis-like episodes). With the rolling crash I’m not giving myself enough chance to recover before exerting myself again like getting washed and dressed. I just don’t know how to get out of this cycle at the moment.
These are just some points from the M.E Disability Rating Scale that apply to me:
- I spend most of my day in bed
- I struggle to walk and have to use a wheelchair
- I experience episodes of paralysis
- I have difficulty with my speech and use other forms of communication
- I have poor cognitive function and have brain fog most of the time
- I’m hypersensitive to light, noise and touch, plus smells
- I’m in pain 24/7 and of experience nausea
- My PA’s support me with pretty much everything in every way possible
- I live alone but I can’t live independently; I need a lot of support from my care team and family
- My meals are prepared for me
- I have a profiling bed and hybrid airflow mattress
- I also have a bat lift (I can’t tolerate showers)
- I am unable to work
People often think that M.E is just about fatigue but it goes far beyond that. The best way I can explain M.E to you is to imagine that you have the worst hangover ever, add in a really bad case of the flu and not having slept for a week. That’s how M.E feels like. Oh and resting and napping won’t ease how you feel and you’ll wake up feeling more tired too plus you’l experience every type of pain you can think of.
I developed M.E in 2014 after getting the flu, February to be exact and I never recovered. Following that was years of not knowing why I felt the way I did. My GP a few times told me I had Post Viral Fatigue Syndrome and with rest I’d recover but I never did recover. July 4th 2017 I was diagnosed with M.E but I was pretty much left on my own. As time went on my M.E got worse and by 2018 my consultant classed my M.E as ‘severe’. I’ve declined since then. I now use a wheelchair most f the time. I spend most of my day in bed. I thrive on the moments when I can make it out the house. My Batec helps my mental health so much and has to be one of the best things I’ve ever bought. Since my M.E worsened end of last year it’s been really hard. I miss being able to do activities like crafting and I want to have a declutter and reorganisation in my bungalow and I’m behind on replying to pen pals but I just don’t have the energy. I have to be so carful with how I spend my limited energy and everything is taking more time and effort. I have to carefully plan an pace everything I do and even then the M.E Monster still seems to win. I do hope I can get back to where I was this time last year. I think I’m just scared that how my M.E is now is my permanent ‘new normal’.
I hold a lot of grief with my M.E. I see friends and people I know posting on social media of things they’re achieving even if it is just getting their nails done and I just feel like every one around me is moving but my life has stopped. I’ve always tried to hold onto hope that I can return to education and get into my dream carer (or something similar that’s possible within my restrictions) but sometimes I think it’s just that, a dream. I grieve for my pre-illness life. University, gym, swimming, yoga, ballet. I was always quite active.
I have achieved some things. Like moving into my adapted bungalow. It’s lovely to have my own space and I’ve been here 3 years now. I wouldn’t still be here if it wasn’t for my PA’s, care team and family. I’m still doing little things to my home to make it mine.
I try to look for the positivities. Every day may not be good but there’s always something good in every day. On my bad days it can be hard to look for the positives but it might be something as simple as wearing my favourite pyjamas.
I’ve developed a good bed set-up with accessories attached to my bed like my Flexzi stand and my Giraffe bottle and well organised bedside draws. Plus my body pillow to support me and my over bed table. I have a profiling bed (a bit like a hospital bed but less clinical looking but it has all the same functions). I also have a hybrid airflow mattress, my new one has memory foam on top of the moving tubes of air so it’s much more comfortable and better for my hypersensitivity. The motor is also very very quiet which is great for my noise sensitivity. I also have a voice controlled environment (blinds, heating, fan, lighting) which makes life really easy for me.It gives me independence too.
Sometimes I try and reach out on a severe M.E group I’m in on Facebook but it often leaves me feeling more negative. I don’t find the chronic illness community online that positive personally. The most positive community I’ve found is Cards2Warriors. They have a monthly card swap as well as offering support mail to those having a difficult time. I’ve been on their long term recipient list so I occasionally receive support mail and it truly brightens my day and reminds me that someone is thinking of me as living with severe M.E is very isolating.
Treatment for M.E is few and far between. Many NHS Trusts like mine don’t have a specialist service and many services aren’t equipped to support people with severe and very severe M.E. Many services also don’t take on out of area patients as they have too many patients in their own area. Last year I finally got under UCLH’s M.E service but I didn’t get the support I need, I’m now not receiving any support as the service has no consultant to run the service so the service is on hold so for now I am back with no support at all, especially at a time when I need the support with the worsening of my M.E. There is talk in the future of the NHS having specialist severe M.E services but this is yet to come into fruition.
More funding for research to understand M.E and develop treatments and ways of better diagnosing M.E are much needed. As of yet there are no treatments for M.E (thankfully Graded Exercise Therapy and CBT have been removed as “treatments”). Unfortunately for me I experienced bot GET and CBT and GET especially made my M.E worse as it did for many people with M.E unfortunately.
To anyone with severe M.E I highly recommend Emily Colligridge’s book ‘Severe M.E: A Guide to Living’ it’s been an invaluable resource and continues to be for me.Saldy Emily passed away due to M.E in 2012.
For now I just take each day, each hour as it comes.
Links, Organisations & Resources:
- Action for M.E
- M.E Connect (helpline) - call, email, chaplaincy, online community
- Book: ‘Severe M.E - A Guide To Living’
- Parliamentary debate on severe M.E (June 2026)
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