Still Here. Still Love Wine. The Sea. Music. Still Disabled.

I have been absent. I have been in a bad place. A roller coaster ride of attempting recovery from chronic back pain and sliding back into the darkness of chronic back pain. I am not going to talk about details now, although I will at some point.

But, I have had a particularly negative experience at a music festival, which happened as I attempted to live a life that is not really my own, while trying desperately to forget that despite surgery, and rehabilitation, and time, I am probably not going to ‘recover’ from this chronic back pain. As the enormity of how hard it is to do things that ‘normal’ people do hit me like a brick, I was right up close to the appalling discrimination of people with disabilities a way I have not been before. I now know that the reason for this lack of experience has been because I have shut myself away from the real world and not participated in it any more than has been essential to survive, because that world doesn’t really belong to me any more. Except, it does now. I am reclaiming it.

I am going to relive some of this experience with you in my next post, and I will share some of my future experiences as I come across disability discrimination on a daily basis, and yet also find amazing people who try to be our advocates. I will use my time blathering on to do my little bit to help make access, treatment and attitudes to people with disabilities better, nicer, kinder. So that it is not so hard, it’s not so embarrassing and it’s not so fucking difficult to do the things that we used to do. Like go to a music festival.

I am dedicating the future of this blog to my Chronic Back Pain Suffering Mumsnetters who have been my rock in the last couple of years, in the last year in particular. They have picked me up when I’ve been on the floor. They have cheered me up when I have been unhappy. They understand when no-one else does. They have shared their own experiences. They have held my hand when I have been unable to cope. with the relentlessness of this fucking chronic back pain.

They also love Frank Turner, internet shopping and Fly London boots.

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Having a Disability at Work. I Refuse to Give In.

It was a very cold crisp day, a Wednesday, at Dartmouth Zoo. As R dropped me off in the disabled parking area, I was met with the sound of African Beats. It was very early for such loud music but welcomed the entrancing sounds as I shuffled into the visitors area and stood in the long queue waiting for coffee.

I felt out of place. I felt like I didn’t know anyone, felt exposed and my (what I am now recognising as a) disability advertised as if I was shouting it out through a megaphone, people glancing in my direction as I stood in discomfort for what seemed like hours.

This was my work conference. I had been back at work for two days after a 6 week absence. I already felt alienated as I had been off so long, but I had been determined to return. 6 weeks is too long and the lack of enthusiasm, excitement or pleasure to see me demonstrated that my relationship with colleagues had shifted from me being an equal member of the team to a resource burden. And, as I stood there sandwiched between two managers and the Big Boss from out of area, I felt more alien to the group of people than I had ever felt.

I wanted to cry. I wanted to ask R to come back and take me home. I knew then that I was not ready to be back at work. Every step I took continued to shout out that I was in pain and I was met with looks of pity and sympathy, but very little actual words. People have stopped knowing what to say.

I stupidly didn’t take my crutch and regretted that almost immediately. I am not sure I know fully know why yet, but it is more than a physical crutch. It gives me a silent explanation of the pain pain on my face, it makes my hobbling and ginger steps less obvious.

Later, as I sat to eat a hastily warmed through chilli as my colleagues didn’t expect me to turn up so didn’t book me any lunch, a colleague who was sat at the front of the conference noted that he saw me walking very carefully and painfully to the toilet halfway through the conference, and what that told me was – if he saw, then everyone else saw – and not for the first time I felt like crying.

As the conference ended, I found myself walking downhill towards the work bus that would be taking me back home, my lift from the morning not available. I found myself walking slowly, alone down that hill as people rushed past me, in twos or threes. I moved to one side as more than one car full of my colleagues drove past me down the long uneven walk, not stopping to offer me a lift to the bus. And I realised that things won’t ever be the same at work again. I sat next to a colleague in silence on the way home for 20 minutes as for the final time that day I held back tears realising yet again that Equality Acts cannot make people treat others fairly.

I didn’t go to work this week. Following that horrendous experience of pain, ignorance, alienation and hostility as the Resource Burden, I realised that I simply cannot cope with being in that much pain and yet still show I am worth the wage I am being paid. I realised I cannot work while my pain is so obvious people literally cross the road from me at work.

It was with trepidation that I made the call to the GP to ask for my Drop In The Ocean dose of pregabalin, which I started weeks ago but have been to afraid to increase, be raised from 25mg to 50mg. I have kicked against the ‘zombie drug’ for such a long time as I cannot bear the feeling of sleepiness, of tongue tie and head clouds, of my eyes drooping, my appetite dropping and my energy being zapped.

But, nor can I work under the circumstances that I found myself in last week, where I felt embarrassed every time I stood up and had to walk, where my role has been pretty much decimated. Quitting work is not an option, not least because I need the money, but also because I have worked so hard to have a career which has already been thwarted and slowed down by becoming a mother. I am not prepared to allow the ignorance and resentments of others to stop me from doing my job. So I have to make sure I can do my job as well as I possibly can, and be at work for as much as I possibly can.

And that means losing a little bit of me to medication.