I am nervous but I don’t think it’s fair that I should be. I’ve been pushing for help dealing with the pain for months now. The worst thing about this flare, the one that’s been raging a year now, is that I have been offered zero support compared to previous experiences. No physio, no hydro, no splints or therapies – just a constant message of ‘take your painkillers regularly and stay active’. That’s easy for them to say.

I can’t justify taking painkillers before bed – they space me out, make me have crazy dreams and frankly my son could be screaming the house down and I wouldn’t hear a thing. I’ve rolled my sleeves up and got involved with every aspect of parenting to date – I am certainly not using my health as an excuse to duck out of the commitments overnight. I also dare not take painkillers during the working week – they relax me too much, make me emotional and not to mention make me a little unfit to drive. For work I manage a team of people across two counties. I love working with my team but I can’t be their mates – Joel on painkillers is more likely to say yes to those last minute leave requests or feebly justified reasons for why someone needs to work from home on a Friday afternoon – I have to retain my wits in my job. That leaves early evening and weekends – like a child waiting for Christmas, those perfect windows to numb myself and talk often far too much (you’d know when I’m ‘high’) feel like a lifetime away. It feels cruel to suffer like this in 2020.

‘Stay active’ – have you tried when your fingers are physically twisting in front of your eyes and your knees and heels make it unbearable to stand still for more than five minutes? This time last year (or to be more precise December 2018), I was sub-12 stone, quicker sprinting on a rugby pitch than guys 10 years younger, could run 10km in less than 45 minutes and went to the gym at least twice a week. Now I’m knocking on 14 stone, question whether I could still physically run and would give anything to have the confidence to get back in the gym; past the fear of finding out just how little I can do and how weak I’ve become. I also drink too much and comfort eat like a pig on the days it really hurts. Forever chasing something to make me feel better.

Part of me thinks the reason I haven’t been offered any additional support is that the specialists know they messed up – they changed my treatment when I was the fittest I had ever been. They told me to make the most of biologics and my word I made the most of it. The more obvious reason is that support services are so overloaded by people like me, who have gone backwards after the move to biosimilars, that physio departments etc. cannot keep up. I know I am one of thousands – my GP, rheumatology nurses and ward nurses have all told me so. Whatever the reason, telling someone to ‘take your painkillers regularly and stay active’ in this century does not feel like a solution but a plaster on the gunshot wound.

After what I was told would be a 22 week wait (or over 5 months!), I have managed to get my case escalated and will be attending the multi-discipline Pain Management Team on Thursday (9th January).

Why I’m nervous? It feels like so much is riding on it. It’s hard to explain but pain makes the days and nights so long and I hate what I am becoming as a person both in terms of character and what I see in the mirror. I need a break in the clouds, an opening of the cell door – just one chance to break this horrible cycle. Like when I was first put onto biologics and I had my first full week without pain, I took my opportunity. I walked, ran, when to the gym, did situps and pushups before bed, everything I physically could and within a couple of weeks, I broke the cycle. My movement started to return, the weight started to drop, the pressure on my joints become less and before you knew it, I had broken free of arthritis’ shackles and driven inflammation from my body.

I’m fearful of hearing another version of ‘keep taking your pills’ or seeing another expression of hopelessness or lack of ideas written across another medical professional’s face. Give me an ounce of opportunity and I will take it and smash through this cage with every fibre of my being – but I can’t do it alone, for my body and spirit is broken.

I am nervous.

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Arthritis and Psoriasis Patient Advocate, Writer And Consultant. Owner Of The Pain Company.

I share my story of Juvenile Idiopathic Arthritis to raise awareness and specialise in pain, parenting (with disability) and the mental health impact of living with chronic illness. I write and campaign for leading charities and organisations. In addition, I provide patient experience consultancy for both charities and global healthcare companies.

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