Tuesday 12 May 2015

It's that time of year again!

Yes, that's right, its International ME day.

For those of you who check out canvas and paints regularly, you'll have been expecting a post today, as you already know I have ME. For those of you who don't, here goes:

On August 17th 2005 I was half way through a 6 day cycling round North Wales holiday with my husband. This was about a month after having completed the Manchester to Blackpool bike ride in my fastest ever time of 5 hours 50 minutes - it is a 57 mile ride on road between the two places, covering some beautiful, hilly country roads.

We'd arrived in North Wales on the Sunday afternoon after dropping our then foster children back home to their grandparents - they lived with them and came to us for regular weekend breaks, to both support the children and their grandparents.

On the first day we went for a short ride, only doing 11 miles. On the second day, we did about the same, then we gradually increased it so that on the Wednesday we cycled 30 miles, and we were planning to do the same on the Thursday. When I woke up, I thought I was developing a cold, but so what? We went out anyway. We headed to Llandudno, a pretty Victorian town about 15 miles from where we were staying, but as the ride progressed, I started to feel lousy. We stopped at a chemist so I could buy some cold remedy, but I gradually started to feel worse and worse.

Mistake no. 1 was not asking Kev to cycle back for the car while I rested. Mistake no. 2 was me continuing to navigate. We got lost, and almost ended up on the A55 - a very, very busy dual carriageway that's not safe for bikes. The planned 30 mile ride got longer and longer as I tried to work out a route back, and I felt sicker and sicker. Eventually, we managed to find our way back to where we were staying; by then I was feeling pretty dreadful - the cold I thought I was developing felt much more like the 'flu.

I never recovered. I've not been back on my bike since; 10 years later it is gathering dust and cobwebs in my shed. It's hard to describe exactly what it is like, as how I feel can vary so much. The Spoon Theory sums it up pretty well, though.

I've learnt to manage this nasty illness, most of the time fairly successfully, sometimes not. I have relapses where I can barely walk for days, can't think clearly, can't even look after myself.  I rely on my family and friends for help, as there's so much I now can't do. We've moved to a bungalow as walking up stairs exhausts me and causes significant pain.

The hardest thing to cope with is the feeling of grief for what I've lost - the physical strength and capacity that I used to take for granted; being able to think coherently; having a memory that functioned. It took a while, and a CBT course to help me manage the negative emotions I had because of how little I can now do.

One of the best things has been painting - not only does it give me something so positive to do, that doesn't take up too much energy, but it is something very productive, that people appreciate, and raises money for Oxfam and Child's Play.

Another has been learning about the blessing of enabling people to help me - even complete strangers when I'm struggling in a shop - only last Saturday I was trying to do the food shopping, but I was in too much pain to bend down to pick up a box of eggs. My choice was either do without, or swallow my silly false pride and ask for help. Or, as I prefer to look at it, to give someone the gift of feeling good about themselves for helping someone. I asked another customer to help me by picking up a box of eggs for me. She did, I thanked her and she went away feeling good about herself because she had helped someone out.

I have to remember that it is a blessing to help another person, no matter how small that help is - even a bad man wouldn't give a child a stone if they were hungry.

I'm hoping to be part of the UK Rituximab trial at some point; that may lead to a cure for ME. I'll still paint, though.

For more information about ME, click here.

To donate to Oxfam, click here.

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