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. 

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.

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! 

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! 

Swings and roundabouts

The visual disturbances are worse. I’m struggling to not let it get to me sometimes. Not being able to see properly is very frustrating. It’s not my prescription and there is nothing untoward going on that the opticians and doctors can find. Instead it’s the good old M.E. reeking havoc I with yet another bodily function. 

It’s hard to describe really, as I’ve mentioned before. It’s a bit like looking through a dirty or scratched camera lens (and my glasses are clean thank you very much so it’s not that.) It’s not quite the same as the aura I get during migraines either although sometimes I take my migraine medication just incase. It’s not as simply as just being out of focus but it is as if my brain can’t work fast enough to process what my eyes are seeing. There are also squiggly lines (a bit like you used to see on old TV screens when it had lost signal?) that like to dance around at the top and bottom of my peripheral vision. It doesn’t seem to be linked to the light sensitivity I get either. I wish I could show you to explain! 

The best example I can give you – even if I have the energy or concentration level to read I have to then overcome this…

In other news, my hair has grown! And without me really realising, which is the best sign because it means I haven’t been consciously struggling to wash it myself. That’s the only reason I got the chop (back in 2012) in the first place; so I could manage it myself, i.e. I couldn’t, so it all had to come off. 

I’ve even gone so far as to buy myself a hairbrush. Sorry faithful, old, multipack comb. You served me well. And hair actually looks better when you brush it. Who knew?! In the year or two before I got ill I had a bob and I’m well on my way to getting back there. Although I’m sure a style that wouldn’t need styling would surely be better with my current energy supply. 

Getting there. I’ve tamed my hair as best as possible just for you. Aren’t you lucky!
My hair seems to grow up and out before it grows down. I have very thick hair that has quite a strong wave to it (what is this a beauty blog!) and so it can look very Afro-esque for a while, much to the amusement of my family. It’s almost a year since I ‘did a Britney’ and shaved me head out of desperation and perhaps boredom or perhaps it was just a moment of madness…Talk about manageable hair! It was great, but it’s really not a look I can pull off! 

So I can’t really see but soon I’ll have luscious, wavy locks again. Let it never be said that I couldn’t at least try to see the positives.