Lumps and bumps, aches and pains, and never enough spoons.

A little over 2 years ago, I wrote my first blog post about having fibromyalgia. It's a pretty miserable condition, not least because it's completely invisible, so there's a lot of explaining to people about why you can't walk far, or why you need to lie down for a while because you stood up too quickly. For the most part, people are patient, understanding, curious and good natured about it. But it is still exhausting to explain it, and to some degree I still feel a bit embarrassed about not being able to keep up with my peers over the simplest of things, like going for a nice walk somewhere.

When I first wrote about my illness, I was a stay-at-home mum to four children, the youngest of whom was just over a year old. Since then I've taken up voluntary work with the Green Party, which I absolutely love and in many ways has given my mental health a huge boost by giving me a sense of purpose. The flip side is that it's also shown me just how much being ill limits my capability to function. 

This weekend, I was invited to a training weekend at the Eden Project in Cornwall. Workshops (one delivered by me, eep!), discussion groups, a picnic on the beach and glamping - so much fun, and always wonderful to meet new people with the same outlook on life as me. I even met someone else with fibromyalgia! We had a great time comparing symptoms and having a whinge about everything. Unfortunately I didn't do a great job of taking care of myself, and when it came time for me to go home on Sunday morning, I already knew I would be paying for the exertion of the weekend for quite a while. Sitting on the tube, waiting to get off the train to change at Oxford Circus station, I realised I was bordering on having a panic attack, purely because I realised that my arms and shoulders were so weak and bruised from carrying my bag the few hundred metres I'd had to walk through train stations already that I wasn't sure I could walk any further.

I try not to be a complainer. I try to be upbeat and positive. But I also really value honesty, and I think conditions like fibromyalgia need people to talk about them more - not just to spread awareness of their existence, but also to challenge societal structures that currently inhibit people with conditions like mine from being able to fulfil life goals as an able-bodied person would do.

The temption is always to downplay the pain. When people ask "are you ok?", most of the time they don't want the honest answer of "well actually, I feel sick and bloated, my hips are screaming at me, my legs are bruised from sitting on a chair, my peripheral vision has gone blurry, my chest hurts so much that breathing is a real challenge, and I need to sleep like you wouldn't believe!". And so I smile, tell them I feel good and carry on with acting out the part of someone who doesn't want to curl up and cry. Facebook is a particularly tempting playground for painting a picture of everything being amazing. I can be lying in bed, whimpering in pain, unable to sit up for more than a few minutes, but if I post a joke or a funny cat picture on Facebook, I can at least persuade people that I'm ok and I don't want or need their sympathy.

I want to go back to paid employment sometime soon. I want a stimulating and fulfilling job! I'd really like that to be linked to the Green Party, because I've been passionately pouring my limited energy into it for a year now and feel I have so much more I want to give! But... the fact I need to accept is that my health is so unpredictable that I will make a terrible employee. Some mornings I wake up and can't move, can't talk. Some days, just the ten minute round trip for the school run is enough to end up with me lying on the sofa, dizzy and struggling to breathe. Some days, my legs will bruise and swell up just because I've sat on a wooden bench instead of a squishy sofa.

The reality of leaving the house early every morning, travelling to work, then sitting in an office and being productive for several hours, then travelling back home - this is something that I can't kid myself that I'm capable of doing in any reliable capacity. A day here and there, ok. Sounds good. I've had some trips into London to the Green Party office for training days and meetings, and it's been good. I've then had to spend at least 2 days in bed to recuperate. 

I like to use the Spoon Theory analogy to explain to people why small, everyday tasks take on a whole new level of challenge when you have a condition like fibromyalgia. You can read more about it here - and please do. 

I've spoken to some people with disabilities who say that we view all this upside down - that in fact it's not the individual who is disabled, but society. People have different capabilities that may manifest in anatomical differences, mental health differences, or in "invisible" conditions, such as mine. These are only DISabilities because society is exclusionary - starting with our language and our societal outlook towards anybody whose capacity for economic productivity is below optimal. We ascribe value to people according to how much work they can put in versus how much they take out, so someone with any form of condition that changes that balance is treated as lesser than someone in optimum health.

I want to go back to paid employment, but would any employer be prepared to take me on, knowing that I may be off sick a lot? Or that I may need to work from home? Or that I may not be as efficient as someone who doesn't need to lie down every hour or so? How can we change things to make employment and wider society more aware of the needs of people with disabilities, and more receptive to meeting those needs without making a big song and dance about it? 

My dream job would be as a member of Parliament - but the demands and rigour of the campaign trail when I stood as a candidate in this year's election wiped me out. The job itself involves long hours, lots of stress and lots of travelling. Do I know that I could be a good representative for people in my constituency, given my health and limitations? Why should I be excluded from pursuing this role because of those issues? Currently job-share MPs are not permitted, as my colleagues discovered when they attempted to be nominated as jobshare parliamentary candidates and were refused. 

It's taken a long time for me to come to terms with the fact that fibromyalgia has this big an effect on my life, and that this means I am a person with a disability. Actually taking the time to permit myself to identify as disabled has been very empowering, which I didn't think it would be. I thought that identifying as disabled would be admitting a weakness, because that's how we treat people who aren't able-bodied. 

So as usual I feel tired, sick and am aching all over, and the energy it's taken me to fight off several panic attacks today means I can barely keep my eyes open now. But I also feel determined to be part of a movement to change the way we interact with people with disabilities, and to make our society more accessible, more aware, and more inclusive. Watch this space...

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?