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Wednesday, 19 July 2017

Rhia's M.E Story

My name is Rhia. I am 22 years old and was diagnosed with M.E in November 2016.

I've had a lot of my symptoms for a few years, but they really started to show in 2015.

M.E is a variable illness. Sometimes I can be absolutely fine and other times I feel so rubbish that being in bed for hours seems like the best option for me. Having said that, my 'good days' now are still not how I used to be, but getting there I think.  I am lucky enough to have a mum who runs her own business. I now work for her and am able to tailor my hours to suit my health and how well I am feeling.

A few months back, I was desperate to just be completely cured. Whereas now, I try to just deal with my symptoms on a day-to-day basis.  Having spoken to other members  on a  course I took ,that taught us how to deal with the illness and how to 'pace' , I know that not everyone has the same symptoms. 

My most severe symptoms include: muscle aches/burning, jumbling my words, feeling like I can't connect fully with what is happening around me , memory problems and nausea/dizziness. Luckily I don't get all of these symptoms ALL of the time, unless I am really wiped out! 

I think support is key to handling M.E. I have been lucky to have the support from my family , partner and friends, but have found that I have to 'prove' to medical professionals that I am unwell. I have also had to go through various processes just to prove I cannot work full time and am entitled to some financial support. I am still in the process of 'proving' I am unwell, but do just about get by on my 10-15 hours paid work a week. 

I sometimes use a crutch to walk if I am having a bad day and am out in public. This helps others to be aware that I am a little unstable on my feet, and they then don't get angry at me for walking slowly!
It took a lot of courage for me to start using the crutch because many can't see why I need to use it if I am ''just feeling tired''. I don't tend to use it much, but do find that a visual sign of someone being unwell really helps people to be more understanding.
If I am doing well for a few weeks I do actually tend to think "maybe I'm not unwell after all and was just being dramatic/making it up in my head" but it quite often comes back and hits me in the face when I do too much and need to recover! 

My aims for the future are;

- To be more confident in myself, and not be embarrassed or ashamed of being unwell and telling others about it.

- To increase my work hours gradually so that I am able to support myself in the future, and so that I am able to do the social and active things that I enjoy.

- To keep a diary (which I keep meaning to start!) of my M.E experiences.

- To listen to my body and to learn when it needs to rest, even if I feel like i can carry on and use up that last bit of energy.

Love,

Rhia x

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