Joel’s guest post is the 42nd post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.
For those that don’t know me, my name is Joel. I’m 35 years of age, from Norwich and have had Juvenile Idiopathic Arthritis (JIA) since I was 11, Ankylosing Spondylitis (AS) from the age of 14 and in my early to mid-20’s I developed Psoriatic Arthritis (PsA).
My body’s own immune system attacks itself in my joints, organs, skin, nails and eyes. I’ve had years in a wheelchair and I’ve had years completely symptom free where I’ve run half marathons, played hockey, rugby and ridden 100 mile sportives – I try to do as much as I can, when I can but this can be difficult to explain to friends as that guy who was raising money cycling round Norfolk one week, is unable to get out of bed the next. It’s a part of my condition that I have struggled with the most and why, until very recently, I have kept it quiet for pretty much all of my adult life.
Due to the story of my 2019, which I’m sharing a brief version with you below, I set up my blog, on the advice of some of my Drs, charities and loved ones to share my experiences, help others in a similar position and to give me something to focus on and be passionate about whilst I adjust to not being able to play team sport or be as physical as I once was.
In January 2019, like many others, I was told I would be moving from Humira – a ground-breaking biologics treatment which changed my life and kept me virtually symptom-free for around 5 years – to the Biosimilar Imraldi as part of a national cost saving exercise for the NHS. You can read more of the detail here but essentially what followed almost immediately after the treatment switch was one of the biggest flares and backward steps in the management of my condition since I was in my early 20’s.
I should mention at this point that it wasn’t just the intense pain and stiffness (to which I had become unaccustomed to), huge increase in absence from work or the realisation of how woefully unprepared and ill-equipped I now was for dealing with my disability after so many years of being in remission that made 2019 so desperately upsetting – it was because after two years of trying (and many more of me being reassured about the limited risk of passing on my diseases), my wife and I had our first child on 13th January 2019; a beautiful boy named Dylan. With the flare in full flow by February, I was suddenly petrified of the future.
Anyone who’s had children knows it’s flaming hard. Those first few weeks and months turn your world upside down and I would challenge anyone to not have a fleeting, guilt-ridden thought at 3am when on your fifth night feed and you’ve got to be up in two hours for work because paternity leave went by in a heartbeat to not question if you might have made a terrible mistake.
I was having these thoughts, I was more sleep deprived than I’ve ever been in my life, my wife and I were bickering as any couple does as you try and completely blag your way through this crazy situation of being responsible for a whole new life that didn’t come with a manual – but at the same time my pain levels were increasing at a frightening rate.
I could physically see joints starting to swell, plaques appear on my body, I was having to plan when to take painkillers so I wasn’t completely useless to my poor wife overnight, I was no longer able to be physically active so had suddenly lost touch with my friends and cut ties with social circles and the saddest thing of all is that even when there was an opportunity to sleep, I couldn’t through thoughts of what I might and might not be able to do with Dylan in the future given my change in circumstance. All of this came out of nowhere at the worst possible time.
I had nightmares of dropping him or falling down the stairs whilst carrying him that often ended with me waking by jumping out of bed, screaming or even convinced that I had dropped him on the bedroom floor and my wife would find me looking for him for a few seconds until I came around. Worst of all was the thoughts of my wife leaving me because I couldn’t pull my weight or becoming another person that she had to look after.
Writing this down and reading that back for the first time sounds horrific and is upsetting and for the first six months of Dylan’s life I was ill in more ways than one but I wasn’t unfit to be a parent – I was just a guy going through a life changing event at the same time as being in an awful lot of chronic pain, with uncertainly about my future health and had convinced myself I was more of a hindrance than a help to anyone. I should have sought help earlier but I was spinning so many plates at the time, I didn’t know where the chronic condition/flare ended, poor mental health began or what was just part of being a new parent.
My turning point came in the summer. By this time I had started to accept the situation and make peace with my chronic illnesses again (although it still felt awfully unfair to force a change of treatment that was working) and I needed to get back to the mindset I had as a teenager when I was permanently on crutches or in a wheelchair but it never stopped me living my life or trying to prove people wrong.
That’s the positive ‘movie script’ version, the reality was that it was also getting pretty hard to ignore the fact that I wasn’t adjusting to my change in health; my appeal to have the biologics decision reversed had failed, I was clearly depressed, isolated, angry, I had piled on weight, lost my muscle definition and the best word I could use to describe me then was simply ‘flat’. The confident, chatty Joel had gone and I was focussing far too much on the issues rather than all the good that I had going on in front of me, primarily my beautiful family.
After one particularly bad night of nightmares and dark conversation about how useless I was, my wife asked me to get medical help. This had been mentioned many times before but this time it was different – I know when my wife is asking but there is no longer a choice on the table and I also know that I am nowhere near brave enough to go against it! She puts up with a lot from me over the years so when it gets to that point, I listen and swallow my pride.
To cut a long story short – it wasn’t until I was sitting with the GP and talking through what had been happening that I truly realised how bad I had let the situation get. I still remember now how I got goose bumps listening to myself vocalise my inner thoughts. The Dr was very good at reminding me that I faced a unique combination of events in my situation and that even the strongest people struggle with chronic pain alone, let alone becoming a new dad and the flare out of blue to deal with. It allowed me to look at my situation from the outside in and was like a huge weight being taken off of my chest.
We talked through my options and I expressed a personal preference to avoid antidepressant medication after a previous bad experience so we settled on a plan involving some painkillers to help me sleep, a break from work, a promise from myself that I would get out of the house, do more for myself and find something to focus on and put my energy into so I can move on from being miserable about not being able to do what I used to (partly where this blog comes in).
At the time, I thought I was the only one in this situation, that it was a bad roll of the dice, terrible luck and that no good could come from it. However, once healthy mentally again I then started to think about previous flares and how pain and an element of depression or low mood went hand in hand.
Whether it was when I was at University and failed my qualification as I lost roughly six months to poor health, when I was at high school and had to do swimming lessons with a younger year group whilst my mates were running around on the field playing football or all those months I spent in hospital laying on my own because my poor parents had three other children to get back to each evening. When I look back, it’s the emotional or upsetting element of the flare I remember, what disadvantaged or deprived me, not the pain – yet at the time, in the moment, it’s all about the pain.
You complain about the pain to others or skulk around the house trying not to draw attention to your pain, you plan your day around the pain and when the painkillers might be most effective, when not in pain, you worry about the pain returning – it’s all consuming yet upon reflection it’s completely futile. By focussing on the pain, I realised that I was letting it in, letting it define me and steal from me the opportunity of making memories with loved ones, memories that will long outlive any recollections of the pain itself.
Thinking about my situation as a new dad, I realised I had been going about it all wrong. Yes, there will be challenges and some things that I simply cannot do but rather than worry about what I might not be able to do in the future, I should be focussing on doing things that distract me from the pain. I’m learning to love what I can do and not be upset by what I can’t and as a parent, contribute where I can and not be discouraged where I am unable.
The future still scares me – and it should, if it didn’t it would mean I don’t care enough – but I can spend all my time and Dylan’s precious early years worrying about whether I’m going to be able to play football with him or I could be enjoying every moment now – the first steps, words and ‘I love you daddy’s – they are things no amount of pain or disability can take away from me.
With my new positive attitude, I successfully re-appealed my treatment plan and had the decision reversed in November 2019. At the time of writing, I am 9 days into my new/old treatment of Humira and have already seen a reduction in pain and skin rashes and with the help of the blog and now learning to talk about my challenges, I am optimistic about my future and confident in my ability as a parent living with a disability.
I don’t have nightmares about dropping the baby anymore. 😊
My Favourite Superhero
Deadpool – he’s badass, has a f-you front he puts up to the world but peel back the layers and there’s a vulnerable, nice guy in there that wants to make people happy – I can relate to that.
Thanks Joel for sharing your story with my readers and me!