Thursday, 27 June 2013

Fibromyalgia, innit.

There's not much point in writing a blog or keeping a diary if you're not going to be honest about stuff. It's taken me a while to build up to this post but I think I'm just about in the right place to start talking about being unwell.

I suffer with fibromyalgia.

It's a horrible condition, not least because it's one of those invisible illnesses that leaves you looking fine but feeling at death's door. It is usually triggered by a traumatic event or illness; in my case it was pregnancy.

My pregnancy with my daughter in 2008 wasn't easy. I felt horrendous for most of it. Very lethargic, mysterious aches and pains that couldn't be explained by any of the tests I had. My hips were agony, my chest was constantly tight, making it difficult to breathe, but the more doctors examined me, the more I appeared to be a picture of health on paper. By the time my daughter was born, I was convinced everything had been in my head. It must be otherwise something would have been flagged up by all the blood tests, scans, and consultations I had!

I pootled on through the next couple of years, dismissing each new complaint or incident as just "annoying things my body does". Suddenly developing lactose intolerance out of nowhere, saying goodbye to my previously glowing complexion and welcoming a visage resembling that of a greasy teenager, constant fevers, night sweats, insomnia, anxiety attacks, exhaustion,  joint pain over every inch of my body - all of it making daily life just that bit more of a battle than it ought to be.

When I fell pregnant with Baby T in 2011, I didn't really give too much thought to being unwell again. I had trundled along for the past couple of years constantly feeling A Bit Rubbish but with no individual thing causing SO much trouble that it warranted a trip to the doctor. This pregnancy made that with my daughter look like a Caribbean cruise, however. There were many days when I couldn't even get out of bed; where the dizziness, nausea, aches and pains would leave me utterly unable to function. If I managed to get out of bed, shower, get dressed, do the school run and walk back home, that was a Good Day. If I wanted to have the energy to walk back to school in the afternoon and pick my children up, I needed to lie on the sofa for the remainder of the day. Occasionally I was stupid enough to try and do a bit of housework while I was home - after all, it's bloody miserable to lie down and look at the dreadful state your house is in, knowing you shouldn't try to remedy it. I really regretted it afterwards though. They usually ended with me in floods of tears, sitting on the kitchen floor trying to muster the energy to crawl back to the sofa.

I told myself and my husband that this would end when the baby was born and I would be back to "normal"- my normal anyway, where I feel rubbish but can function for the most part. Baby T was born in May last year and I waited patiently for the pain in my hips and knees to subside, for the breathlessness to go away, the lethargy to ease off and the "morning sickness" to leave me alone. I'm still waiting. It hasn't gone anywhere and I wake up each day feeling like I've just run a marathon before going ten rounds in the boxing ring. Attempts to do housework are met with stern warnings from my husband not to overdo it and break myself. Day trips are carefully planned around the knowledge that it will take me 2 - 3 days to recover. Even a trip to the supermarket can put me out of action for the rest of the day!

It's really hard to explain this to people because I look fine. There's no blood test to diagnose fibromyalgia. No x-ray or scan to pinpoint the origin of the pain. It's what they tell you is wrong when they've ruled out autoimmune diseases like lupus and rheumatoid arthritis and there's nothing left to explain why everything hurts all the time.

My mum also has fibromyalgia, so I have an ally in her and can ring her to complain about the frustration and misery of just wanting to LIVE each day instead of existing and 'getting through' to the evening or the weekend or the end of term. She gets it when I say I just want to give up, or when I get upset with my husband for wanting to plan days out that I know I just can't do anymore.

What really brought it home to me was a trip to hospital with Baby T a few weeks ago. He had had a nasty reaction to his latest round of jabs, culminating in an ambulance ride to A&E whereupon various doctors and nurses gave him the once over before packing us off back home around 2am. I had to carry T round the different bits of the hospital, sit up to hold him, stay awake and alert enough to explain the situation to different medical staff, and then get a taxi home in the small hours of the morning. No big deal, right? After a couple of hours sleep at home, my alarm went off ready to get up for the school run. I couldn't move. Not "didn't feel like moving". COULDN'T move. The will was there, but my arms and legs were dead weights. My husband had already been up and about for a while so he brought me a cup of tea and struck up a conversation. I couldn't talk. The thoughts were in my head but my mouth just wasn't cooperating. I managed to mumble half a word but I'm not convinced it made any sense. My husband asked if I was being grumpy with him over something but it took me a few minutes to process the question and try to respond. That was really frightening, and all because I had had a couple of hours running round a hospital the night before.

Conversely, in 2010 my other son was ill just before Christmas and also spent the night at A&E. I stayed with him 'til we were discharged around 3am, went home, grabbed a short sleep then - this is amazing - I got up and went to work. I can't imagine doing that now. Just getting up without even having to think about it... going to work for the whole day without it seeming like an insurmountable task... These days it's an achievement if I get as far as showering and getting dressed without having to sit for 10 minutes to recover from a dizzy spell.

I miss the person I used to be. It's hard to accept that my life will never be like that again, that I will forevermore be measuring out what I can and can't do in a day. I used to love going to music festivals and am dying to go to one next year for my 30th birthday. At some point, I will have to sit and work out if I could actually do it anymore. Four nights of camping with three days stomping round a field listening to heavy metal? Is it even realistic anymore?

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