In January 2019 I was told, like many others, I would be moving to a biosimilar version of my biologic. What followed almost immediately afterwards was one of the biggest flares and backward steps in the management of my condition. Pain and parenting was a combination that almost broke me.

Note: this article first appeared on Undercover Superhero’s Blog as a guest post as part of their ‘Reality of’ series in January 2020.

The second re-write was published in NASS’ Spring 2020 magazine in April.

This is an updated version of those two articles for readers of JoelvsArthritis.

The background

It wasn’t just the intense pain, 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 years of being in remission that made 2019 so desperately upsetting. It was because after two years of trying (and many more of reassurance about the limited risk of passing on my diseases), my wife and I had our first child on 13 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. I’d challenge anyone to not have a fleeting, guilt-ridden thought at 3am on your fifth night feed, when you’ve got to be up in two hours for work, that 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 maneuver your way through this crazy situation of being responsible for a whole new life that didn’t come with a manual. At the same time my pain levels were increasing at a frightening rate.

After two years of playing rugby and running half marathons, my arthritis was back.

2018 – On my original biologic, I hadn’t let arthritis stop me

I felt like I was losing everything

I could 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. Sadly, I was also no longer able to be physically active and with the majority of my hobbies being sporting endeavours, I suddenly lost touch with my friends and social circles. The most upsetting thing of all was that even when there was an opportunity to sleep, I couldn’t because of my worries of what I might and might not be able to do with Dylan in the future. 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, jumping out of bed, screaming or even convinced that I had dropped him on the bedroom floor. My wife would find me looking for him for a few seconds until I came around. The whole time, he’d be sleeping soundly in his crib. Worst of all was the thoughts of my wife leaving me because I couldn’t pull my weight. I didn’t want to become another person that she had to look after.

Writing this down and reading it back for the first time felt horrific. But I was just a man 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 unable to do the things I enjoyed anymore. I should have sought help earlier but I was spinning so many plates at the time, I didn’t know where the flare ended and poor mental health began. Or what was just part of being a new parent.

The recovery

My turning point came in the summer. I wasn’t adjusting to my change in health and circumstances. 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.

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 goosebumps listening to myself vocalise my inner thoughts. I couldn’t believe how self-deprecating I had become. How I’d let my poor health allow me to have such a low opinion of myself. I felt like I was failing as a father.

The GP was very good at reminding me that I faced a unique combination of events. 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. We therefore settled on a plan involving some painkillers to help me sleep, a break from work, and a promise that I would get out of the house. To do more for myself and find something to focus on. Something to put my energy into.

The message

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.

It took six months but once mentally healthy again, I reflected on what had happened. I started to think about previous flares. How pain and an element of depression or low mood went hand in hand. When I looked back, it’s was the emotional or upsetting element of the flare that 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.

Learning to be kind on myself

Thinking about my situation as a new dad, I realised I had been going about it all wrong. Parenting alone is tough. I, however, was dealing with chronic pain and parenting. I needed to go easier on myself.

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. As a parent, contribute where I can and not be discouraged where I am unable.

Learning to enjoy the simpler things in life

The future still scares me but I can either spend 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 enjoy every moment now. The first steps, first words and the first ‘I love you daddy’. 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. Eleven months after my world was unnecessarily turned upside down. At the same time, I created this blog to teach myself to talk about my challenges. To accept me, myself and to help others. For now, I have replaced sport with writing and I hope it leaves a mark with time that makes Dylan proud of me.

Pain and parenting was a difficult experience but one that made me stronger. 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.

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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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