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?

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.

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?

2013!

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. 

When I grow up...

Can you believe I started writing this post over a month ago and couldn't get any further than an opening sentence? This is a difficult piece for me to write because it means accepting some uncomfortable truths about myself and how I feel about my life. Quite how you start writing something that says "I don't know what meaning my life has" is beyond me.

About 3 weeks ago, I went to a photo shoot session that I'd been lucky enough to win (that is something else I want to blog about because it was a phenomenal experience). As we were unwinding post-shoot, I asked Andrea, the photographer, how she got into the industry, fully expecting her to tell me how it had been a lifelong passion and something she'd pursued for most of her life. Her story was remarkable and more along the lines that a pivotal event in her mid-30s made her suddenly reevaluate everything she was doing and ask herself what it had all meant, what would her legacy be. When she couldn't answer that, she decided on a total career overhaul, to send herself back to college and start doing something she enjoyed. That path took her to photography and now she produces some astonishingly beautiful art. I walked away from the conversation asking myself the same questions. If my life suddenly ended now and I had to reflect on what I have achieved and what it has all meant, what could I really say I've done?

Recently, I reflected on my role as a mother and homemaker, and somewhat defiantly asserted that I am perfectly satisfied and fulfilled with this as my occupation and that it is no problem for me to have put any thoughts of a professional career on the back burner until my children are all in school. I stand by that, but chatting with the photographer last month really started me thinking about WHAT I will do when my youngest child starts school and my days are my own again. 

When I was a youngster, I had dozens of ideas about what profession I would undertake when I grew up. When I was 9, I wanted to be a vet (until thoughts of having to put animals to sleep deterred me). When I was 12 I wanted to be a journalist, much to my grandmother's horror! At 15, I wanted to go into law and actually spent a week's work experience in a solicitors office. Realising that I'm not ruthless enough to be a good lawyer put paid to that ambition, and from there I cycled through archaeology, anthropology, teaching, nursing, midwifery - actually, I've lost track of all the career possibilities that have fluttered in and out of my What I Want To Do When I Grow Up spectrum. So here I am, 28 years old, wife and mother, and absolutely naff all idea of what I want to do When I Grow Up. 

I know that I want it to be meaningful. I've always said I wanted a "career", not a "job". I want to make a difference to other people's lives, and set an example to my children that nothing is beyond your reach if you work hard enough. But do I have the courage to see this through? I have friends and family who do Important Jobs, and have Offices and Letters After Their Names. I confess to being more than a little intimidated by listening to my family chat about this, that or the other development with their workplaces. Will I ever be able to contribute to that sort of conversation? 

How do you measure "success"? If my children are happy, well adjusted individuals with a loving, secure family background, can I realistically ask for anything more? Without wanting to get into an existential conundrum (to which I am exceptionally prone), why does it matter in the grand scheme of things if I live my life quietly, without a high-flying career? My childhood best friend and I used to dream of all the wonderful things we would achieve, and while she is indeed off being Important now, my life is much more subdued and domestic. Nobody beyond my immediate family will remember me after I'm gone. My name will never be in history books. That doesn't bother me but it also doesn't help this lingering feeling that I ought to have SOME idea of what I'm going to do When I Grow Up. 

Perhaps this is a common feeling amongst stay at home parents. I'd certainly welcome any feedback from others in this position, and especially any tips on how to deal with it. I have a couple of friends who've recently returned to work after taking time out to care for small children and I'm dying to pick their brains about how they found it. 

The big bad "B" word - bedsharing

I'm going to try and resist the temptation to write a load of "for" and "against" points in this post. There is a wealth of evidence that sleeping in the same bed as your baby is perfectly safe as long as you observe a handful of safety points, all of which are nicely summarised here. This post is simply my personal experience of it, particularly in the last 3 months since my youngest son was born. 

I first discovered bedsharing quite by accident. My first son was about 3 weeks old and I was beyond sleep-deprived. He was not an easy baby by any means, especially when it came to sleeping. He hated his Moses basket, screamed if put in a cot, snoozed briefly in the car seat as long as you stood up swinging it back and forth but woke the moment you put it down. After 3 weeks, I was deranged with tiredness. My friend's mum, a wonderful midwife, came to visit and asked me if I'd tried lying down on my bed to feed him. She helped me get comfortable, pointed out the safety do's and don'ts and left us to it. He went to sleep! And he stayed asleep for hours. AND I SLEPT TOO! When we woke up, I felt like a new woman and resolved to stick with this marvellous practice every night. When my second son and then my daughter came along, there was no question of where and how they would sleep, and the same applied when this baby was born. 

What differed this time was the attitude of the health care professionals I encountered. Previously I felt I had to play down the role of bedsharing in our lives, or print out studies demonstrating that it was safe as responses to the concerns of health visitors. Lying in bed on the postnatal ward after Baby T was born in May, however, my eyes were drawn to a little A4 poster on the door (which I cannot for the life of me find an online edition of!) containing a drawing of a bedsharing mother and baby, and a summary of the safety advice. It seems that finally the medical profession is recognising that most mothers will, at some stage and sometimes only for one night out of desperation, have their babies sleep in bed with them and that rather than put forth blanket advice to not do this, it is far more sensible to at least tell parents how to do it safely. I'm surprised that I actually feel SO much better for being able to come out of the closet and talk openly to my health visitor about bedsharing!

So what have the last 3 months actually been like for us as a family at bedtime? Well, mostly pretty good. T is, for the most part, a great sleeper. On average he wakes 2 - 3 times a night to be fed, at which point he turns half onto his side, snoozily latches on and then falls asleep again when he's done. I am very pleased to not have to leave my bed in order to tackle the night feeds! Recently he's taken to falling asleep around 8pm at which point we put him in the carry cot downstairs and then I move him to his cot in our room when we go to bed, where he'll sleep until around 2am. I have to confess that for the first few nights he did this, I couldn't sleep. I felt very anxious even though he was only a few feet away! When he's lying next to me, I can quickly check that he's still breathing, he's not too hot or cold etc. When he's in his cot, I worry that I wouldn't immediately know if something was wrong. Plus when we fall asleep in bed together, I like to hold his little hand and I miss that when he's all the way over there in his cot! 

It's not all sunshine and daisies though. My hips and back are struggling with lying in the same position all night. Left to my own devices, I like to sleep on my front, limbs sprawled out as much as I can! Definitely can't do that with a baby in the bed. Lying on my side is my least favourite sleeping position. We've also had to contend with a bed that isn't really quite big enough... we only have a 'small double' bed, not a full double. It's a squeeze with me and my husband in (both sprawly, inconsiderate sleepers!), but adding the baby to the mix makes it a combination of uncomfortable and not really safe (baby gets too hot in between the both of us, or is too close to the edge of the bed if I lie in the middle). So in order to make it a safe sleeping environment, my husband has taken to using either the air bed in our room or the spare room, or sleeping on our (admittedly very comfortable and big) sofa. We've had to put a lot of work into replacing that lost intimacy of sleeping next to each other but we're doing alright with that. We both know it won't be forever that the baby is in our bed, plus we know that if it became a real issue for our relationship, we could simply invest in a bigger bed and then all snuggle in together safely!

As much as I'm looking forward to getting my bedspace back and being able to sprawl again, I know I'll really miss waking up next to a little baby face. My older children all abandoned my bed by their first birthday (apart from occasional nights if they were poorly or had a bad dream) and it was a sad moment for me to realise that I wouldn't curl up for a snooze with them again. My husband and I have said repeatedly that we're really throwing ourselves into embracing all the hard work of a baby's first months this time because we know Baby T is our last and if we wish this time away, we will regret it.  So yes, bedsharing has its bad points as much as its good points, but I wouldn't give it up for the world. 

The feminist housewife...

I didn't think that "Bog Off, Cherie Blair" would work too well as a title, but please do feel free to take that as the subtext of this post. As a brief background, the former PM's wife has well and truly stuck her foot in it again by criticising stay at home mothers, calling their choice "dangerous" and claiming that they lack ambition. I've read a few different newspapers' coverage of this, trying to find some representation of it that wouldn't have me spitting feathers, but the Guardian, Telegraph and Daily Mail articles each brought me out in a rash of rage and frustration.

In essence, the claims made against housewives/homemakers/stay at home mothers - whatever you want to call us - are that we set a bad example to our children by not having a professional career, we set ourselves up for trial and tribulation in the future by being dependent on our husbands, and we are throwing all the achievements of our feminist mothers' generation in their faces. 

Pardon me one moment while I let out a howl of frustration and bang my head against the wall...

Ok, I have composed myself, and so to continue.

Don't get me wrong; I completely agree that it is beyond unfortunate when relationships break down and women are left in difficult positions trying to reassess their living arrangements and work out how to raise their children without the father living in the same home. I've been there, done that, got the t-shirt. It sucks. Nothing about being a single mother is easy - financially, emotionally, socially. I only survived because we have a fairly comprehensive welfare system designed to help people from all walks of life who need a foot-up when something goes wrong in their lives. Without that, well... I don't like to think about how I would have coped 50 years ago if I'd been in the same situation. 

The amazing, wonderful thing is that things HAVE changed in the last 50 years - for the better! Women do have more rights, better security, fewer oppressions. Some of that has come from changes to the law, giving us the vote, the right to divorce our husbands, the right to own property, the right to earn the same salary as a male counterpart and so on. Some of it has been social change, altering the way we talk about and think of women's roles, although that element appears to be lagging behind. 

Whichever way you look at it, it is much less dangerous now to be a single mother than it used to be. There are things in place designed to keep you afloat and help you get back on your feet. Still, it's sad to think that this is the preoccupying element when it comes to discussing women who choose to stay home to look after their children rather than return to paid employment outside the home. Why oh why do we need to focus so heavily on the "what if" and worst case scenario when planning our families? I know it pays to have contingency plans in the event of falling on hard times, but if fears of relationships breaking down or partners dying governed all our lifestyle choices, very few of us would take the step of having children at all. 

And so to the point about stay at home mothers lacking ambition and throwing feminism back in our forebear's faces. I called this piece "The feminist housewife" because that is how I see myself. I do not work outside the home, and yet I consider many of my principles and philosophies to have strong feminist foundations. The two are not mutually exclusive, despite what Cherie Blair may think. 

Feminism and the whole concept of the women's rights movements is all about giving women CHOICES, giving us the power to decide for ourselves how to live our lives. Where life for a woman previously revolved around her reproductive functions, the revolution of the 1960s and onwards opened the doors for women to do what they wanted, and not to have life set out for them based purely on their gender. 

It is my right to decide for myself to stay at home with my children while they are young. Society does not have the right to dictate to me that this is what I must do because I am a woman, neither does society have the right to dictate that I must have a professional career AND take care of my family because I am a woman. Yet that is what Cherie Blair and similar critics of stay at home mums suggest. Because we are women, we must achieve a balance between being the perfect partner, mother AND employee. Heaven forbid we neglect any one of those! Look to Gina Ford's latest drivel book for a stark warning on neglecting your husband's sexual needs; look to Cherie Blair for a warning about not maintaining paid employment outside your home, away from your children; and pick up any newspaper from the last ten years for plenty of right-wing lamentations about parenting failures leading to the downfall of modern society.

The message from all that is clear - WOMEN! You wanted it all - well fine! Have it all, but you'd better do it all perfectly or we'll come down on you like a tonne of bricks.

What utter claptrap. Why oh why must I tick all these boxes in order to be a successful woman? How is this any less oppressive than being told that I cannot choose a career because I happen to have been born with two X chromosomes? 

I'll say it again - feminism is about CHOICES. Cherie Blair urging women to set better examples to their children by working outside the home, ensuring that they won't be left high and dry should their husbands leave them or meet an untimely death, is the least empowering, most denigrating comment on modern womanhood that I have heard in a while. Why instead does she not urge men to take a more active role in the home and share the work of parenting? Why is she not attacking the government's latest round of welfare cuts that will actually force parents out of work because of the soaring cost of childcare and diminishing availability of subsidies? Why not support a woman's right to decide IF she wants to stay at home with her children or go out to work rather than lay the ills of the world at her doorstep?

As a feminist, I am proud to say that I have chosen to set aside my career until my children are older; I have chosen to stay at home each day to care for them, keep the house in a liveable condition and take care of the menial day-to-day tasks. When my children are older and at school, when my constant company and attention is no longer required, then I will choose to seek paid employment outside the home. I made my decisions because it was what worked best for our family dynamic. I know plenty of women for whom this life would be an utter nightmare, and for them going out to work is their best decision too. I also know plenty of women who find the whole concept of parenthood absolutely awful and do not want to have children at all. We all deserve to be supported in these choices and not told that we're wrong and that we must marry, bear children and have a career because we're women and that's what women do.