Monday, March 9


OMG I'm in agony! This is so bloody frustrating! I can go weeks with just aches and pains that after 11 years I'm kind of used to. You do get used to the daily niggles of Fibromyalgia and CFS, you just live with them, it becomes the norm after all this time. But from time to time I get hit with a 'flare'. This is a common term to fibromites, and one we all dread. A flare is basically that, a flare up of symptoms that we normally have. The aches and pains increase to a very noticable point and the fatigue just washes over you. My flare (as usual) is in my lower to upper back and my right shoulder (including the large muscle on the shoulderblade). Because of this, I walk like an 80 year old woman on a go slow.

It started yesterday and over the day got worse. Mid afternoon, I just lay on the sofa with my book. What I find hard to deal with are the looks of disdain from Mark. He looks at me like I'm being lazy by laying down reading rather than being up and about doing stuff. I try to explain, but how do you explain pain to someone who always has something worse than you? Every time I say something like 'my back hurts' he'll come back with 'oh, mine's been aching for days', and my 'whatever' is hurting.. blah blah blah. The difference is, it doesn't incapacitate him. How can I explain well enough for him to understand that I've actually done nothing to bring this on and that it even hurts to lay down?

So when we get to bed, I got the usual question of are you ok? This seems to be a nightly routine and he doesn't actually want an answer. A yes gets a response of a smile. A no, gets ignored as he's reading his book. So generally I will give a mmmm reply and that's good enough. Last night I told him no I'm not ok, to a response of oh. (nose still in book). I told him I hurt all over, badly. He did actually ask why to which I replied (quite flippently to be honest) oh the usual.. everything hurts, y'know, the usual I get from time to time. He carried on reading his book. I turned over feeling sorry for myself and went to sleep. He absolutely doesn't understand, and often tells me it's in my head. Oh if only... I wish to god it were in my head, I could shake it off and get back to normal life. Sadly, it's not, it's very real and very bloody painful.

I woke up several times in the night, three times of which I couldn't actually move. My back was frozen. I dont' get scared about this anymore. It used to frighten the life out of me, but I suppose I'm used to it now. I know that if I move slowly holding on to the headboard, I can get turned over ok. I manage to get up out of bed and get the blood flowing into my muscles again, and lay down to go to sleep and repeat the whole process again.

So today, the sun is shining, the wind is blowing and (this is obviously a housewive's brain) it's a perfect day for getting the bedding washed and dried. Is it worth attempting to strip the bed? I'm really not sure at the moment. I have to get Isabelle to school, which, when I'm like this, is a task in itself. I also have to call at the supermarket, there are three things which I HAVE to get today. Then pick Isabelle up from school at 11.30. Also, I will have to cook the dinner tonight. So these are the essential tasks that MUST be done whether I like it or not.

I once read on a website about The Spoon Theory. It was on a site for 'invisible diseases and conditions'. The theory is (hopefully in short) that your energy is limited when you are in a flare. You only have a certain amount and you have to 'spend' it wisely. If you were to take a handful of spoons out of the cutlery draw, this is your energy for the day. It may take one or two spoons to get showered and dressed. Another spoon to get a little one to school... and it goes on like this. If you manage you spoons wisely, you get through the day ok. Today, I have very few spoons, and with the tasks that HAVE to be done, I'm not going to have many left, so I'm going to have to be careful that I don't run out of spoons too early, otherwise I'm in trouble if I run out before the essential tasks are done. So this is why I'm wondering about leaving the bedding. It can wait till another day. it's silly really, but changing the bed is a simple task, but it means energy to strip the bed, get it all downstairs and into the washer. Hanging it out, fetching it back in and putting it all back on the bed again. That's the worst part, the putting it back on. My shoulders and back just can't cope with it. Could I ask Mark to do it? oh yes, I could ask him. But he just doesn't understand. It would mean me trying to explain the pains I have. He would switch his ears off at the first sentence and the bed still wouldn't get made until I did it.

I guess I'll leave the bed covers on today. [sigh]