Sunday 8 August 2021

Living with Severe M.E - Severe M.E Awareness Day

A caucasian woman in a dimmed room. She has an eye mask on and is holding a hot water bottle. She is laid in bed supported by pillows.
The reality of Severe M.E
In the UK there are around 250,000 children, young people and adults with M.E - 1 in 4 of those people will have either Severe or Very Severe M.E and I am one of those.

My M.E didn't start out as being severe. I was at university when I got unwell and as a result I had to leave my studies. At the time no one could give me a definitive answer as to what was wrong with me; my symptoms where just 'medically unexplained'. I was getting more fatigued and exhausted and each time I saw my GP I was told that I had Post Viral Fatigue Syndrome, but there wasn't a key virus that I had unlike the experience of some people with M.E and now those who have had COVID and gone of to develop Long-COVID.

Then on the 4th July 2017 I finally got my first appointment with my neurologist regrading the possibility that I had FND; he confirmed that diagnosis and alongside that he also told me that I had M.E.

I came home with a diagnosis that I'd never heard of. I wasn't referred onto anyone or anything about my M;E and locally there isn't a service I can access. So I spent my time learning what M.E was and the best ways to manage it.

Over time my M.E got worse; I didn't realise it at the time but looking back over the time whilst I've been ill there are so many things that I struggle or can't do now compared to other times when I first became ill and the things I could do back then.

Defining Severe M.E

My M.E is now classed as 'severe' based on the M.E/CFS Disability Rating Scale

This is a generalised summary of the experiences of people with Severe M.E though it's a very individualised illness so some of the things on the DRS may differ to the experiences of what someone with Severe M.E may experience or have difficulty with:


70% Disabled: Moderate to severe symptoms for most or all of the time. Confined to the house for much or all of the time. Normally requires help with various aspects of personal care and meal planning and preparation, possibly on a 24-hour basis. Very limited mobility. May require wheelchair assistance.

80% Disabled: Moderate to severe symptoms for most or all of the time. Only able to carry out a very limited range of physical activities relating to personal care without help. Requires help with meal planning and preparation. Frequently unable to leave the house and may be confined to a wheelchair when up, or spends much of the day in bed. Unable to concentrate for more than short periods of time. Usually requires daytime and night-time supervision. 

 - M.E CFS Disability Rating Scale for Severe M.E

Due to the fluctuating nature of M.E many people will fall between one percentage and another depending on whether they are having a good or bad day or periods where they are more well with their M.E but then may experience a crash and so their M.E will fall into a different percentage category on the DRS.

The positives out of having Severe M.E

Despite how incredibility difficult, challenging and exhausting (and much more) having Severe M.E is it has brought some positives into my life.

I now feel that I have a greater sense of appreciation and gratitude for things in life especially small things like a letter from a friend or having clean washed hair or spending time outside even in the rain when I go out for short walks in my wheelchair. I'm also grateful for the support I have in my life from both professionals and friends.

When I first became unwell I turned to support groups on social media but I found many less than supportive; I'm not one for Facebook anymore but Instagram is my social media preference and over time I've come across different people and gotten to know them and many of whom I'd now consider to be good friends. We support each other through messages or some through letters and it's been a much more positive experience for me. I can turn to my friends and we can support each other and offer advice or share experiences such as for me recently I've been talking to some of my friends about having catheters but at the same time we don't just talk about health stuff, we talk about our pets, hobbies, projects we have on the go, books and much more which I feel is so healthy as we are more than just a bunch of illnesses and symptoms.

I wouldn't have started pen palling if I hadn't have become unwell. Letter writing is a massive joy for me in my life and it brings me so much happiness to know that the person receiving my letter will bring a smile to their face ad maybe even postal workers too - I know that the ladies who work in our village Post Office love to see my letters.

As well as letter writing I also wouldn't have started blogging or my YouTube channel either. I love blogging and sharing videos and it's a nice hobby to help raise awareness of living with disabilities like M.E but I share posts and videos about non-health related content too as like when I talk and write to my friends there's more to me than just being ill so my blog and YouTube channel is about all aspects of who I am and my life.

I love my advocacy work too that I've done with the M.E Association and Action for M.E. With these two organisation I've written posts for their website and membership magazines and also done some collaboration videos too.

M.E Organisations & Charities

M.E Association Helpline: 0344 576 5326 Action for M.E Helpline: 0117 927 955

Smile For M.E
Delivering Smile parcels to those living with M.E & their carers