The truths of living with severe M.E.

https://www.ucan2magazine.co.uk/blog/jessica/M.E.

 
Here Jessica Taylor-Bearman, who has M.E. and is the author of A Girl Behind Dark Glasses, describes her time in hospital from the age of 15 – and how she became determined to document her experience, despite being severe bouts of exhaustion…
 
When one gets admitted into hospital, it is always thought that it will only be for a short time, whilst they fix you and then you’re back into the whirlwind of real life, so when I was first taken in with very severe M.E., I thought that it would be the same. It wasn’t. Days turned into weeks, that soon became months and years. Four to be exact. I never imagined that I would be hospitalised for such a long time from the age of 15 but there really was no other choice. Despite it being detrimental to my health to be in hospital, my needs could not be catered for in the community.
 
Hospitals are anything but ideal when you are sensitive to noise to such an extent that even a pin drop hurts, and to light so much so that you had to wear dark glasses all the time, they are hell. It was made even more difficult by the fact for over the half of the time I was there, I could not speak, move or eat. Tubes kept me alive, whilst passive movements were keeping my range up. Being voiceless was the most difficult element because people didn’t understand my needs and unfortunately, didn’t want to give me the time of day.
 
M.E. is like living with a constant broken battery of energy. There are no Duracell batteries for this bunny! Everything you do costs, whether it be just talking to someone or sitting in a chair. It is all about pacing the day, so you can conserve energy at every opportunity. When I wake up, I must wait for my energy supply to see what will be possible with the day.
 
Sometimes, I will be able to do some of my paintings or go on a short wheelchair trip and other times, I can be in paralysis for over nine hours, unable to speak or move. One room is often my whole world, and I spend 23 hours at least in bed. This is a huge improvement for me and is one of the reasons I have managed to cope. Back in 2006, the very best I could do was five minutes concentrating on something and I spent all day every day in bed.
 
Coping with severe M.E. is difficult, and it is hard to feel like you are living a life and not just existing. I do this by concentrating on the really small things and finding joy in them. I had always said I was going to write a book, and to have accomplished that is a massive achievement. I paint through laughter, and this also gives me great happiness. It is incredibly frustrating to not be able to do exactly what you want and to never know how you are going to be on a given day. Life has become a case of surviving through the pain and suffering. We are like butterflies, fighting for our day to break through our cocoons and fly again.
 
Jessica’s book A Girl Behind Dark Glasses is priced £12.99 and published by Hashtag Press. Follow Jessica on Twitter @jayletay or see jaytay.co.uk to follow her M.E. journey.

 

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