Saturday, 26 July 2014

Maybe next time

A near sleepless night (heat, nerves, lack of sleep-tiredness) and I've 'woken' up feeling far from my 'best'.

My goal to drive to see my friends is now on hold. Not cancelled, just postponed. And I'm okay with that. I feel I'm closer to achieving it than I was in April when I first set my sights on my next target. I've come a very long since I started to drive again in 2012.

C'est la vie with M.E. 

Wednesday, 23 July 2014

And for my next trick...

I like to set myself targets and goals. I think it's important for me to have a focus and to feel like I'm doing and achieving something. Some targets are daily ones like 'get dressed' or 'shower' or 'meditate' and then there are the ones that are one offs. Like the one I have in mind for this weekend. I'm (hopefully) going to a BBQ for my friend's birthday and I'm planning on driving myself there and back. I haven't managed something on this scale since August 2010 but part of me feels it's time to try. 

I actually wanted to attempt this goal in April and meet my friends at a coffee shop. That didn't even nearly happen as I was too poorly to even be a passenger in a car that day, let alone be the driver. So I shall attempt it again. (And then again and again and again and again until I am a fully fledged independent adult once more, even if only for an hour or so every six months!) 

This time last year I completed Operation Ice Cream and since then I've managed an outing to Sainbury's on my own to get some emergency rations of the chocolate variety. 

This, though, is a whole different kettle of fish my friends. It's socialising. Properly. Not just swapping polite pleasantries with a shop attendant. It's sitting outside in temperatures that will possibly make the fatigue and malaise worse or, on the other hand, that'll leave me feeling cold to my bones for hours afterwards. It's eating food that may not agree with me. It's driving further. It's keeping up appearances. It's mixing with people who I've never met and who don't know my story, or my situation, or why I might be sat there with my eyes closed and doing weird breathing exercises to help get me through. And then it's driving home again afterwards! 

How hard can it be?! Ha! Wish me luck.

Thursday, 17 July 2014

Memory Quilt for Severe ME Day Appeal

A message from The ME Association.

"Memory Quilt for Severe ME Day on 8th August

For some of us, the chance to lie around in bed all day would be a real treat.  But for many ME Sufferers, it is a real drag.  Spending day after day looking at the same room, the same pictures, walls, and bedclothes.  It’s no fun!  And the longer you stay there, the more you begin to lose contact with the outside world.

8th August is designated as “Severe ME Day”.  A day of understanding and remembrance for those with Severe ME.  The ME Association would like to enlist your help in making sure that ME Sufferers who are unable to leave their beds, or their homes, are not forgotten or overlooked.  You matter to us.  Your struggles are at the heart of all we do – to find cure for this illness.

If you have severe ME – or if you know someone with it – please send us a photograph.  Just a photograph – no names or details are needed.  We’ll piece all the photographs together into a gigantic virtual bed quilt (or photo montage if you want to be strictly correct), and post the finished version on our Facebook page on 8th August.  A further copy will be printed in the Autumn edition of ME Essential.


Please email photographs to Helen.hyland@meassociation by the end of July."

I'm not sure if I still 'officially' qualify as a severe sufferer but I'm all for joining in to raise awareness of the severe side of this awful plague. Who's with me? Get practising those cheesy grins and let's get snap happy! 

Thursday, 10 July 2014

My little book of Happiness

Many of us have to make a conscious effort to find the good in each day. Don't underestimate how challenging this can be sometimes. In times of utter despair it takes superhuman courage to say "Well at least I'm warm and cosy in my bed..." For example.

A while ago I swapped my symptom diaries for a diary of 'Three Good Things'. Some days there were a whole host of 'good' things to write about but on other days it was a struggle to find just one.

I've upgraded my notebook of 'Good Things' to a 'Little Book of Happiness'. 

The idea was to take one photo each day and stick it in the book. Pictures can be easier than words sometimes. It'll be more of a journal with receipts for things I managed to go and buy myself, or a card from a friend that made my day. 

Giving the motor skills a work out! 
It soon became obvious that printing a photo a day was just a waste of paper. I really don't do something photo worthy on a daily basis, so I do throw in the odd 'three good things' entry. Some days it does feel like the only good thing was that I tried to pick up a pen and think hard about what I can write down. My 'good thing' for that day then was surely that I tried to find something to write...even if there was nothing to be written other than that. 

Tracking milestones
It looks quite juvenile and it's not as well put together as it would once have been but it serves its purpose. And it gave me a good excuse to treat myself to the polaroid camera I'd always wanted!