Monday, 13 July 2015

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...