Friday, 11 May 2018

Guest post by Olivia for M.E. Awareness Week

At 15 I got ill and I never got better, in fact I never will be ‘better’, not as I was pre-illness anyway. In the past 7 years and 3 months I’ve racked up quite a lot of diagnosis’s, involving most of my organs and bodily systems, but my main and most debilitating diagnosis is severe M.E. Here is what I thought I’d be doing at 22, and here’s the realities of what I’m able to do.

At age 22 I thought 
I’d have just finished university doing a journalism and English degree. Education has always been so important to me, and I’ve always thrived off it. In the earlier stages of illness I had to give up most things, but I clung to keeping in education, over a social life, or anything else.

What I’m actually able to do age 22
I had to drop out of education at 18 as I became too ill to continue. It’s hard seeing all the people I’ve grown up with and known through school going to university and graduating, and I’ve still not been able to go. I feel like I’m so far behind now!

At age 22 I thought 
I’d be working as a journalist. I’ve always loved writing and reading and I have a thirst for knowledge.

What I’m actually able to do age 22
I haven’t been able to read books or magazines for a few years, as my brain can’t function well enough to read, understand, focus and process. I write occasionally (this post took me doing tiny bits a day for weeks) and sometimes what I’ve written makes no sense, I beat myself up about this. What’s a journalist that can’t write? It sounds like the start to a bad joke.

At age 22 I thought 
I’d live on my own at the other side of the country, in an apartment in a city with a fluffy dog!

What I’m actually able to do age 22
My Mum had to give up work to become my full time carer, when I was 18. I was always incredibly independent but I’m less independent now than I was at age 10. I need help with pretty much every aspect of my life, I can’t even go and make myself a glass of water or wash my face on my own.

At age 22 I thought 
I’d be travelling the world, learning about new places, and taking my camera along for the ride.

Me unwell
What I’m actually able to do age 22
I haven’t been well enough to go abroad since I got ill, and I haven’t been well enough to even go on a break in the UK in over 5 years. The only time I’ve spent even a night away from my house in the past 5 years, is in hospital. I spent 5 consecutive months of last year in hospital, cities away, and I wasn’t even well enough to venture outside of the hospital grounds in all that time.

At age 22 I thought
I’d still be dancing, acting and doing more theatre-work.

What I’m actually able to do age 22
I’m lay flat 90% of the day. I have a reclining wheelchair for when I’m at hospital appointments, which are the only time I manage to leave the house. I can’t push my wheelchair myself, so need my Mum to push me. I can faint up to 4 times a day, my fatigue is horrendous beyond comprehension, and I’m constantly in severe pain