Background Reading: Preparing for the Pain Management clinic

Some of you kind folks have been dropping me messages about how I got on at the pain management clinic; firstly, thank you and secondly apologies for the delay in writing an update from last week’s appointment, it didn’t exactly go as I hoped and I needed time to process it before writing it up.

So first of all, the chap I saw was lovely and had plenty of time for me and my long backstory and upon reflection the answers and tough love I received was probably what I needed for what lies ahead but at the time it hurt, a lot. In fact I got back into the car and burst into tears. I knew there wasn’t going to be a magic wand to fix all of this and I knew deep down that there’s a balance to be struck with pain management between feeling and function and whilst I’m holding down a good job, there’s only so numb they can make me before I start to lose the ability to function. However, I was hoping there was something they could do to help me cope, give me access to support services such as physiotherapy and perhaps bring something else to the table that I hadn’t considered. I have to remain positive, it’s how I’ve always been and frankly, it’s hope that gets me through the day at the minute.

Is pain ok if you are still able to work?

So essentially, as I suspected, additional pain medication isn’t an option for me. Codeine-based pain relief has always worked for me and although it only takes the edge off, it’s worked to a level that’s kept me in a good job – I’ve worked out over the years that seems to be the benchmark – ‘still working? Good, it can’t be so bad that we need to take action then’ (which personally I find ludicrous, why let it get that bad!?). It was pointed out that I need to take it more regularly, however, which I accept, as I mentioned in the preceding post to this one, I put pressure on myself and avoid taking it at work for sharpness of mind.

The infuriating part

I was told that I hadn’t given Humira enough time to work – I’m 2 months in with only mild benefits to say the least, when previously after 2 weeks I was virtually pain free; although I accept a lot of damage has been done to my body over 2019, I think it’s reasonable to be concerned that it isn’t having the same effect.

I was then told that to my rheumatologists I am considered a ‘success story’ and that I have to remember that as a teenager I was in a wheelchair at times, on crutches much more and to get to 35 without permanent mobility aids given my early onset should be considered ‘an achievement’. This was the bit that particularly wounded and incensed me – don’t use my progress against me, I worked my backside off for years to come out the other side of my teenage years virtually able-bodied again. I lost most of my teenage years to hospital beds and missing out on things my friends were doing and when I first had aspirations of going to university, where I would meet a whole new group of people that didn’t know my history, I was determined to go there with a clean slate, with an ‘invisible illness’. No doctor fixed that – doctors resorted to giving me methotrexate, the chemotherapy drug, at the age of just 15 as they had ran out of ideas – it was me that spent the next 3 years getting out of my chair, back in to school and by 17 playing hockey for a local club. By the time I was 18 I wasn’t perfect, I wasn’t pain-free, I was on 50+ pills a week and had to hide the fact that drinking whilst on methotrexate made me violently sick as I ran to my room from the student bar 2-3 times a night to empty my stomach whilst on a social event – but I did that for me, no one else did it for me and for those years at university I appeared ‘normal’ in the eyes of everyone I knew back then. So I’m not their success story, I’m my bloody own and if I say this flare, caused by the same medical professionals as when they changed my treatment in January 2019, is not acceptable, then it’s not acceptable.

Joel playing rugby
Me in 2018

Background reading: The Inception

The hard to hear part

The next part of the conversation was tough to take but unlike our discussions over what’s considered a successful outcome, I knew deep down that everything the doctor was saying for this bit was true and this was on me.

I’ve always been a fighter. I’ve always taken pride in going into consultations where it was likely to be another slow news day armed with evidence of weight loss or demonstrating how fit I was and how my conditions were holding me back – it always served as a good bit of leverage when I sensed the conversation going stale or a lack of action forthcoming. After all, it was losing 3 stone in less than a year and taking up running 10k’s that finally got me onto biologics a few years back – with all the effort I put in to do my bit to ‘break the cycle’ (whilst a whole range of drugs were failing to control the worsening symptoms), it would have been a brave doctor to not offer me something in return.

It’s fair to say however that 2019 broke me. It didn’t just break me physically but it broke my spirit too and I’d be lying if I didn’t admit that I lost some of that fight. Sure, rugby and running are out of the question now but there has certainly been days where I could have gone for a bike ride or head to the gym but the pain has put me off – and even been used as an excuse if I’m brutally honest with myself. That isn’t me. My other fear of doing physical activity these last few months is fear of finding out just how weak I’ve become, how far off I am from that super fit guy of 2018 that only weighed 70kgs, could run half marathons at sub 8-min miles and could lift with the best of them in rugby pre season despite being a scrawny winger who was only on the field for their pace. Finding out the level of decline in me physically terrifies me.

Joel running with a rugby ball in hand
Me in 2018

As I already knew, I currently am not doing enough to help me. Call it depression, fear of not being able to win the battle this time or just becoming a dad and other priorities getting in the way, I could push more – I just need to regain my spirit and fight. The doctor made it clear that I need to start accepting my new situation and what the future holds and get into the mindset of living with it rather than seeing all of this as a blip – it was hard to hear and frustrating when part of me still thinks this was brought on beyond my control with the treatment change, striking me down in my prime – but as the doctor was hinting at, the time for feeling sorry for myself is over. To force this point even more, he said that he wasn’t recommending me for any physio, that I’ve lived with it most of my life and I know what I should be doing. He told me to get my arse back in the gym (in more polite terms), stop benchmarking against what I used to be able to do and if that scares me then to try something new that I can’t compare against.

He was completely right, of course but it upset me. Upset me that doctors couldn’t atone for last year’s mistakes and made me upset at what I had become. Joel doesn’t quit or give up or the Joel prior to 2019 didn’t, anyway. He did, however, recommend me for pain management therapy to help me with my mindset. It’s not something that I’ve tried before but I welcome it.

The takeaway

So this weekend, having had a few days to think about it all, I have rejoined the gym. I’m yet to go however (still making excuses) but by the time the week is over, I will have swallowed my fear and spent a few hours there, I assure you. I just hope I get bitten by the bug again and can really commit myself to it before I see any improvements – because there’s going to be a lot of pain before any progress, I’m sure.

I am also trying to work on my mindset, trying to be less harsh on myself, enjoy what I can do and be grateful for what I have – that, however, is going to be a much longer game.

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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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