Saturday, July 25, 2015


Today I came across this article about living with Fibromyalgia. It should be filed under 'Things I wish I'd known +25yrs ago.... ', oh and also things I wish my GP had known! Thankfully these days such things rarely get written off as 'Yuppie flu' and other dismissive names and are taken seriously, even if still not easily diagnosed.

Most of the time over the years it isn't the really severe stuff I have had to deal with, just lots of little things being out of kilter enough to make getting through the day (and night) harder work than it should be. It would've been reassuring to know that whilst not 'normal' by most standards, it at least had an explanation and I wasn't imagining things/cracking up/being pathetic etc. And I most certainly couldn't fix it all by 'pulling myself together'!

Understanding is usually what is needed rather than sympathy, but it is hard to get that when you can't explain what is wrong. It's hard enough to give yourself permission to be less than 100% when you do know why today your body just isn't going to cooperate, let alone for anyone else to. It might be okay tomorrow, but then again it might not. Frustrating at the best of times, and unsurprising that you can get labelled as 'just putting it on'.

Contrary to accepted wisdom when living with any disability, trying to push through it and 'not let it beat you' is usually asking for more trouble. Instead make the most of the good days, but Don't Over-Do It is a far better bet! Unfortunately what constitutes 'too much' can fluctuate wildly, and generally you only figure out how much it is once you've gone past it. I've decided that living life at 60% is far preferable to pushing for 100% and then crashing down to 10% as a result. If some days then work out at 80% then that's fantastic, but far better to plan for lower and occasionally surpass it than always feel as though you're failing to meet your targets. That doesn't do your morale or self-esteem any good whatsoever, and heaven knows we've enough challenges to those without imposing unnecessary extra burdens. Having said this, it is one thing to know this intellectually - living by it all the time can be another matter entirely! It is hard to remember to rest when you still have energy to do more, no matter how much you know you're just borrowing energy from a future day.

The more I learn about fibromyalgia, the more things make sense. It is so reassuring to know that other people have experienced their 'hair hurting', or getting pins and needles in the arm from holding up a book to read, or a dead leg from sitting on a hard surface for 10 minutes! None of which are the sort of thing you'd go to the GP over on their own (or we'd be there every week!), but they add up and affect your quality of life.

I love the Kiwi Facebook support group I've joined for the supportive community that readily chips in with 'Yes, me too!' whenever anyone asks 'Does anyone else get....' and shares experiences of various medical options and coping mechanisms etc. It makes such a difference to have people who understand what you're going through, but also understands that each of us has our own peculiar combination of symptoms and what works for one doesn't necessarily work for another. Anyone who tries telling someone that they can't possibly have/do/experience something with Fibro/CFS/ME etc is quickly shut down by the admins, that kind of comment isn't helpful, it isn't kind, and it certainly isn't necessary.

So, having got quite a bit ticked off my to do list today, and whilst someone else is cooking tea (yay!) I'm now going to relax, and read my book for a bit because I suspect I'm pretty close to having used up my spoons for the day, and it's only 5pm!

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