chronic fatigue | Sleep is for the Weak

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

Fear

Posted by Josie on Nov 11, 2009 in Me | 32 comments

I am blogging this morning in a desperate attempt to stay awake.

Kai is busy doing things that Kai bear’s do: hiding things in various places to be retrieved later, pushing things round in his beloved new fire engine. He has a small plastic duck in his mouth and my cardigan wrapped around his neck. So normal day for him.

I, however, am not feeling quite so breezy. I keep falling asleep, my limbs feel like lead, I am dizzy and wobbly on my feet. And I am scared, very, very scared.

I don’t think this is low iron, or lack of sleep, or over-exertion. I think this is my FUCKING Fibromyalgia (and yes people with sensitive ears I WILL swear), and the thought of that taking a hold again makes my stomach lurch and my skin go cold in a way I can’t possibly make you understand. The doctor won’t see me till Friday but I know that’s what she’ll say. The pain levels are ok, but this overwhelming fatigue is how it starts. I have been here many, many times. Hopefully this will be a bad couple of weeks, maybe a month and then it will lift. But last time it was years. I thought I had beaten it, I really had.

I cannot go back to being ill again. I can’t. I am grabbing you by the virtual lapels right now and shaking you because you have to listen here. I cannot be that person again.

For six years I was a pale, floppy can’t-do shadow, managing to walk to the end of the road and back on a good day. I won’t tell you about the bad days. My life revolved around wheelchairs, and overwhelming pain that makes labour look like a walk in the park, pacing, and positive thinking and TAKING IT FUCKING EASY.

I don’t want to take it easy. I want to be alive and not a ghost person. I want to DO and get to be the person that I AM – full of energy and enthusiasm, and not some miserable, pathetic not-Josie.

And the real bitch is that everything was going so well. I was feeling happy and settled, I was FINALLY getting going with life and doing things that felt right and that were taking off. I wasn’t depressed or anxious or all the other things that no doubt my doctor and everyone else will assume is respsonsible for the relapse. I was doing great, I really, really was.

It.is.not.fair.

I don’t care if I sound petulant and whiney. I know it could be a lot worse. This illness won’t kill me but my god it kills my life. It kills my plans, my ambition, my potential. And it has done this over and over again my whole life.

I will not let it do it to me again.

I will not put my life on hold again.

You hear me?