fibromyalgia | Sleep is for the Weak

Perspective

Posted by Josie on May 9, 2011 in Fibromyalgia, Me | 10 comments

I’m laughing this morning. I’m laughing cause I can’t bloody walk. HAHAHA! Funny, right?

No really, it is. Haven’t you heard the joke? I don’t remember it exactly but it’s something like, how do you cure toothache. Why, chop your leg off, of course! Doubt you’ll be thinking about your teeth then!

Ha! Haha!

Ok, I’ll stop with the manic laughter. Because nobody has chopped my leg off, I’m just having the biggest Fibromyalgia flare-up that I’ve had in a long time. Maybe since before Kai was born actually. It’s hard to qualify sometimes, although it doesn’t really matter anyway. It hurts, a lot. That’s all you need to know really. Pain killers aren’t touching it, but then they rarely did.

In any case, I AM laughing. Because there’s nothing like a good dose of physical pain to get things in perspective, is there? And I mean that both ways round. I mean it in the sense that me moping around clutching my sore heart and bruised ego has come quite clearly into focus, given the reminder of what life was like just a few years ago, when EVERY day was like this, and instead of striding through the countryside, feeling sorry for myself and taking photographs like I did last week, I would have been pushed in the wheelchair that I lived in for such a long time.

In which I give you a biology lesson and you either go “Ooh! That’s interesting!” or fall asleep.

Posted by Josie on Sep 28, 2010 in Me | 17 comments

Did you know that emotional stress hurts? I mean, actually really fricking painfully hurt? Well, it does me anyway. And because I am currently lying in bed, in too much pain to sleep, I thought I’d tell you why…

I have Fibromyalgia. Regular readers of this blog will know that already, but I don’t tend to talk about it all that often so maybe you don’t. I started getting symptoms when I was really little, maybe 8? ‘Growing pains’ we would call it or ‘a touch of the flu’, although growing pains don’t normally put you on crutches, and the intense fatigue would wipe me out for weeks and months at a time. My body’s always had a rather odd way of working sometimes, having inexplicable sensory and physical reactions to things. It left me very ill for most of teens and in a wheelchair for most of twenties, before I really leant to understand the way it worked and how to manage it. Anyway. It’s been a lot better for the last few years and I’ve finally got a handle on it, but it does like to come and bite me on the ass from time to time.

Like now. Because I’m stressed, see? And Fibro bodies don’t really process stress in the same way as healthy bodies.

Fibromyalgia is the diagnosis I received in the end and current research into the illness and the things being discovered about the role of biochemicals in Fibromyalgia is beginning to shed some light on what it is exactly that is different about the way my body works.

Most people tend to think of Fibromyalgia as a bit like arthritis, or a bit like MS, but although it sometimes presents a bit like both, it’s actually something quite different.

Fibromyalgia is a nervous system malfunction, more specifically a biochemical malfunction. Now, biochemicals are the things in your body known as “infomational substances” – that is, the substances that convey information from one part of your body to another. This includes exciting things like hormones, neurotransmitters, neuromodulators and other things with fancy names. They affect your entire body and your brain, almost every aspect of the way your body functions, and in Fibromylagia it’s the way these informational substances are balanced and used that causes the problems. Most significantly in Fibromyalgia, it seems to be the biochemicals used to process pain and sensory stimulation that are most out of whack. That means lots of OWWWWs. Lots of them.

Now there’s LOADS of examples I could give here – Fibromyalgia is a complicated disease with a multitude of symptoms, but it’s the way it makes your body respond to STRESS that has always been the most pervasive for me.

I could never understand why emotional and physical stress made me so ill, and by ‘stress’ I mean anything that put my body under pressure. Intense emotions, sensory stimulation, physical injury… For a long time it was assumed that the ‘pain’ I reported to feel was psychosomatic. And I actually believed it for a while. Despite being in more pain than even morphine drips could keep under control at times, I was told it so often I actually believed for a while that I was going mad. That’s pretty hard when you’re twelve, I can tell you. What took years and years to realise was that my body wasn’t responding psychologically to stress, it was genuinely responding physically.

We all know that external stresses causes the body to react in a specific, physical way. Certain hormones and chemicals are released, like adrenaline and cortisol and lots of others with names I can’t remember. In layman’s terms, stress, of any kind, can cause a ‘fight or flight’ response, a way of priming your body for the appropriate action. Emotional stress may leave us shaky and tired as we recover from shock, physical stress like really bright light will make us squint, or hurting ourselves will produce pain messages that make us stop and rest while we heal. It’s all the body’s way of regaining balance.

In really chronically stressed people, the effects can last a while, but in generally healthy people, once the stress is removed, the chemical messages adjust themselves and things return to normal. The problem in Fibromyalgia seems to be that that doesn’t happen. You know when you have a sudden fright and your muscles tense? Well, imagine that once the fright passes your muscles stay tensed and won’t release. Imagine that the way looking into a bright light makes your eyes hurt continues even when you’re in a dark room. And imagine that your body keeps being told it is hurting, even when there’s absolutely nothing to cause the pain.

That’s pretty much what happens with Fibromylagia. And levels of these stress chemicals just build up and up. They leave you exhausted, unable to think clearly, even SEE clearly sometimes. They cause pain in your muscles and in your joints, leaving them tense and stiff. Every tiny new stress creates a whole new cascade of chemical reactions that cause even more imbalance. Just being ill and in pain itself is a huge stress. It becomes a self-perpetuating cycle. That’s what happens in a flare-up. And that cycle can last months, even years in my case, before it slowly settles down again.

(You still awake? Wow, you’re doing well. Don’t worry, nearly finished now. Painkillers kicking in at last…)

So stress, not so good for me. Now generally I can manage the little stresses these days. My sensitivity to light and noise and physical stress is LOADS better. I do the right things to keep my body in balance and I avoid those big cascade reactions and that horrible trapped cycle of stress leading to pain leading to more stress leading to more pain.

But emotional stress? The really big kind? Yep, that still clobbers me.

You can’t take a break from emotional stress. It’s there all the time. It’s not fixed by sleep or by taking it easy for few days. Even a short period of really acute emotional stress and it’s all too easy for my body to start getting in trouble very quickly.

I’m pretty emotionally stressed just now. And the biochemical response that it’s causing is leaving me shattered and in a lot of pain. It’s hard to deal with that as well as everything else just now, but generally it’s more of an inconvenience than anything else. I get ANNOYED! I’m frustrated just now. Just at the time I need to be thinking clearly, making plans and taking control, my body is letting me down again. I haven’t got time for pain or a body that wants to just sleep all day.

Anyway. It’ll pass. I’m savvy enough now to not fall into the traps of things that make it worse. I’ve just got to keep my head above water and tread it out.

But still. Pretty shitty huh?

Thanks for listening.

Night night x

Fatigue Wars Episode IV – A New Hope

Posted by Josie on Nov 13, 2009 in Me | 24 comments

First of all, can I just say… how lovely are all you lot??! The answer is VERY lovely. Very lovely indeed. Thank you so much for all the comments on my last blog post and the many emails and twitterings you have sent my way.

I’m back from the doctors minus two great big vial’s full of blood with that wonderful Tony Hancock sketch running through my head. And since all nine of my pints have been seriously compromised this morning by at least a foot’s worth I am having a sit and a bacon sandwich to make up for it.

I’m feeling much more positive. The doctor rightly pointed out that, given my history, if my Fibromyalgia was relapsing she would expect my pain levels to have increased along with the fatigue and for me to have crawled into her office begging for drugs. And this is a good point as, actually, my pain levels are ok. I did a lot of walking around yesterday and although nearly fell over a couple of times and had to prop my eyelids open so as not to fall asleep in my over-priced under-heated microwave burger at the Blue Planet Aquarium, I did make to the evening without much pain. More importantly I didn’t wake up with ANY which if it had been the Fibro would have been very far from the case, given it’s tendency to make a 20 minute leisurely stroll one day feel like you’ve been run over by an 18 wheeler truck the next.

So we’re testing for low iron and thyroid function and liver function and WI Christmas Tombola and Beatle Drive function all the other usual functions they need to test for in these cases. Results will be back on Tuesday so I’ll keep you posted.

And I am stopping panicking. Chances are this is fixable, just a blip on the radar of my unstoppable plan to write a best seller by the time I’m 30, or, at least, be the first person to achieve world domination through the power of Twitter.

In other news, I made a big decision this week. It is probably not beyond the realms of possibility that my low energy levels are not being helped by the fact that a certain little 16 month old has still been breastfeeding up to 7 or 8 times a day, day and night. Lets face it, he does NOT need this much milk any more, whatever his opinions are on the matter. He eats well and is a big grown up boy now who could probably make pigeon chasing into a successful athletic career, can do all the actions to ’round and round the garden’ AND ‘wind the bobbin up’, and could show you the difference between a train, a tractor, a digger and a car without even blinking. His separation anxiety is significantly better; time away from me now being more treat than trauma. His independence and self-confidence is growing more and more by the day.

It is time. I am ready. Weaning Kai off the good stuff has begun.

I’m not expecting him to stop feeding completely but I am expecting him to substantially cut down the amount he feeds to just 2-3 times in 24 hours And guess what… he’s done it. Nearly every day this week he’s gone from early morning to bedtime with lots of snacks, good meals, distraction and lots of cuddles, and NO distress. Which proves to me that he’s ready too, in a way I hadn’t expected. Kai now has a good breastfeed before bed, one in the night, and then one in the early hours (after which he’ll sometimes go back to sleep). My plan is that eventually we’ll drop the night-time one (when I’m feeling VERY brave and not so tired!) leaving two feeds a day, which is plenty for a boy his age and will still be giving him all the lovely nutrients and immunity boosting benefits that longer-term breastfeeding still offers.

That gives me ALL DAY for my body to do something other than make milk and get to work doing more important things like digesting large quantities of cake and stopping me from falling asleep at random and inappropriate moments.

And the best thing? I look forward to sitting and feeding Kai now. Rather than it be a draining chore that I resent (which is what it had become) with my mind wandering to what I would rather be doing, I sit and I am present and I enjoy the feel of him close to me and breathe in his baby smell and relish every second, re-connecting after a long day of adventures and growing up in which he seems to need me less and less.

I am so proud of him. And so proud of me too. This is a big step for us but the right one.

So there we go. Now, I’m off for a sleep. My bed right now is more alluring than blogging, than twitter, than eating biscuits, and that’s saying something – I must be really tired. I am tired, I’m exhausted in fact. But hopefully only temporarily. And thanks to all of your wonderful supportive words and positive encouragement I am NOT going to let it get me down, whatever this is.

Onwards and upwards. Or sideways and downwards as is more the case for me right now.

Whatever. BA-DOING!! (that was me bouncing back)