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?

Monday, 24 June 2013

I made a thing!

First, let me point out that I am not creative or arty at all. Neither am I musical, and though I believe I can sing magnificently in my head, the grimaces of my peers suggest otherwise. Long have I yearned to be able to Do Something, to make Beautiful Things that inspire others, and long have such talents evaded me. Until, that is, I discovered crocheting. I don't care what anyone says; it may well be the past time of grannies, the fruits of my labour may well be more twee than a doily underneath a chintz lamp - I don't care because it is bloody good fun and I have finally found something I am GOOD at.

LOOK! Look at the things I made yesterday:

For those who say they can't tell what it is, sod off! It's clearly a heart shape. <sniffle> Ok, so I may be taking slight liberties by saying I'm good at this, but this is the first time I've tried to make stuff without it looking like a postmodern interpretation of pre-schoolers' craft activities. I can bake a pretty mean cake, but having just rejoined Slimming World in another attempt to stop being a massive fatty, I need a hobby that is slightly less calorie-laden. I can't say that crocheting is a fabulous workout, but it does keep my hands sufficiently busy to stop reaching for another custard cream.

It has taught me to stop and appreciate the simple, beautiful things in life. I'm more than a little prone to getting bogged down with the big, bad ills of the world (no! you don't say!) but it's good for the soul to take a step back, smell the flowers, look at the butterflies and turn a bit of wool into a pointless frilly thingy.

Wednesday, 12 June 2013

To boob, or not to boob.

It makes sense to ease myself back into regular blogging with a familiar topic, but this time I'm writing from a new perspective. Something I've never encountered before. I'm apprehensive about saying the words out loud or writing them down here, so this post feels a bit brave for me.

I would like to stop breastfeeding.

There we are; just six little words that have caused me a huge headache in the last month or so!

This concept is new to me because, although I've breastfed all of my other children when they were babies, they each lost interest by the time they turned a year old. I've never had to wean a baby off before, or find alternative ways to get them to sleep at night! Ted is coming up to 13 months old and still very much my little squashy baby. He likes food, but still breastfeeds half a dozen times a day at least, as well as on average twice a night. He still sleeps in my bed, although we've tried (and failed!) to move him into his cot once he's nodded off. He knows! He can be in the deepest sleep, snoring his head off and the very moment he touches the cot mattress, his eyes fling open and he cries as though he's been abandoned for tigers to eat.

I don't mind him sleeping in my bed for the foreseeable future. He's a lovely, cuddly companion and a big part of me will miss having baby snuggles once he's outgrown us. I don't actually know why I feel I would like to stop breastfeeding. I just would. I've loved every minute of it, never minded missing out on nights out, never felt it was a burden to be his sole source of nutrition for the first 6 months. It doesn't bother me now; people tell me he's only using me for comfort, but that's fine. That's what I'm there for! It's just... I don't know. I'd like my body back. I'd like to be able to buy pretty summer clothes without first evaluating them for ease of boob access and degree of discretion for feeding. It's a vanity thing, pure and simple. I don't mind admitting that. Or maybe I do... I don't want to be called selfish for feeling this way and I don't think anyone with a shred of sense about them would say anything like that, but there's a lingering voice at the back of my mind that knows Ted still needs me, in his own little world.

So! Lovely readers... I need some help. I need some tips and advice for gently easing him off breastfeeding. It doesn't matter if it takes weeks or months, so long as it works without breaking his heart! He's quite fond of his sippy cup but all my attempts to introduce formula or cows milk as a drink (I cannot for the life of me express more than a few drops!) have been met with a look of disgust.

I'm sort of trying "don't offer, don't refuse" at the moment but he's quite persistant and doesn't mind letting me know when he thinks it's time! Dummies get thrown at my head. Bottles make excellent tools for banging on the coffee table, but nothing more.

Any suggestions?


Hello dear blog! How I have missed you these last... 10 (10!!!) months. I have had so many ideas for posts since my last entry in August, but it transpires that life with four children leaves very little time for writing anything constructive.

We've had an eventful time so far this year; we moved house again after an utter disaster involving blocked drains, a lounge full of sewage and surprise asbestos. Not as much fun as it sounds, and it doesn't sound much fun at all. 

Alongside that, we've started down the long road of assessing my middle son for Autistic Spectrum Disorder. All being well, we should have a diagnosis within 4 - 5 months. That's been quite an emotional rollercoaster already and is something I would like to write about. There is so much information out there and some of the parents I've met through online communities already are incredibly clued up. It's rather intimidating! More than anything, it's a huge relief to finally be a step closer to getting the support my son needs and maybe learning how to see the world through his eyes. 

Finally came my own diagnosis of fibromyalgia. In a previous post, I briefly alluded to ongoing joint pain I was experiencing. To begin with I really expected it to ease off as my body recovered from pregnancy, but at 6 months post partum it was no better. After 8 months, the pain had worsened to the degree that it kept me awake at night. Once I took a step back and put that into context with a bunch of other niggles and minor complaints I'd been treating in isolation, I realised that for the last 3 years I have felt rubbish just about every single day. Some days I just feel a bit crap. Others I literally cannot get out of bed. After blood tests, x-rays, consultations with a rheumatologist and much prodding and poking, the doctors told me that I have both fibromyalgia and early signs of osteoarthritis. I haven't really got my head around either of those yet, but once I do, I'd like to write about that too. 

So there's a great big group of topics right there for me to focus on this year! I've really missed blogging  and have a notebook with dozens of ideas for posts and half-written entries. I'm determined to make time now to finish some of them and get back to what I love doing.