Disclosure: I got the idea for this post from reading Anna BSN’s post which can be found here: https://annabsnrn.com/2019/12/30/new-year-improved-me/ check it out.
Whilst browsing other blogs, I was reading Anna’s post and realised that, mostly due to personal circumstance, I have been more negative of late than my original intention for this blog – which was to demonstrate and inspire by highlighting what those of us with chronic illness can achieve.
I’ll always allow myself a ‘feeling sorry for yourself day’, I think its healthy and used to limited it to one weekend a month. However, due to my health deteriorating, this has slipped to at least once a week and is a habit I must try and break.
Therefore, following in Anna’s footsteps, I thought I’d list 5 things from 2019 that, despite all the challenges, I am thankful for.
1. The birth of my firstborn
This is a pretty obvious one but his arrival happened right before my health went south (I was playing rugby at the time, just got into cycling, still able to run 13, 8-minute miles and was only 11 stone in weight) and I have to forget about all the bad events that followed throughout the year as this was my wife and I’s greatest ever achievement by far and my inspiration to get well again.
2. My treatment decision was reversed
Plenty of my blog posts have explained what caused the flare in January but the important thing was that after 11 months of fighting, my treatment change was reversed and I am back on Humira and starting to feel some of the benefits.
3. I completed RideLondon 100
For those that don’t know, this event is like the London marathon of cycling. 100 miles around the capital and out into the hills of Surrey. This was a huge challenge for me as I did it for Cancer Research UK after my wife sadly lost her nan, quickly after diagnosis and just weeks after Dylan was born. When I signed up, I was still pretty fit and healthy, however by the time August came around I was probably at my worst in terms of pain and joint stiffness. It wasn’t just the event, I had to cycle over 500 miles in the months leading up to the event to build my fitness – which at times was tougher than the event itself.
It might have taken me 7hrs (some of that due to congestion and crashes causing delays on the route) and I couldn’t move for days afterwards but I raised over £1000 for the charity, which I was delighted with.
4. I stayed mentally strong
My last major flare was in my mid-twenties and that’s when psoriatic arthritis was added to my diagnosis. When the pain returned, after being completely symptom free since I was 18, along with skin rashes for the first time, I didn’t handle it well. I became depressed and for the only time in my life, developed psychosis induced by the stress of it all.
It was the most difficult year of my life. I lost control of my finances due to the mindset I was in (I was chasing happiness, which I could see after the event but that’s a blog post for another time), left my job, lost touch with all my friends, went weeks without seeing anyone and worst of all my family didn’t understand it or know how to talk to me about it. When people tried, it only made things worse with that old school mindset around mental health back then with comments like ‘snap out of it’ or sniggeering when you tried to describe what you heard/saw during that episode.
So although I’ve had questions from loved ones worried about my mental health through 2019’s flare (which is huge step forward by the way, yes they were uncomfortable and probably didn’t want to hear the answer, but they asked, which is a first) I’ve stayed strong and it’s not broken me this time – yet. I’m not saying it’s been easy – and I have a guest post and article going out in a charity magazine in January that touches upon just how dark it has gotten for me at times this year, which I’ll share on here once published – but the main thing is I’ve pulled through the worst of it with minimal scars.
On top of previous experience and understanding the signs more as to when things are starting to slip, I think the big difference this year is having that support network, focusing on my son and knowing what services are available – and for that I am grateful.
If you are struggling with your mental health and need to speak with someone, go to this post for more information: http://joelvsarthritis.co.uk/2019/12/20/its-ok-to-be-not-ok/
5. I started this blog!
This is an obvious one and sounds cheesy but I’m going to try my best to explain why this experience these last two months has been such a positive one and a bit of a lifesaver for me following on from my previous point.
It’s hard to explain a flare unless you experience one but it feels like you lose everything. You go from a fit, active, sociable person when in remission (as I personally try to make the most of every opportunity I get when I’m healthy), which in my case was a rugby playing, cycling, out with a bunch of like-minded guys every Saturday to being isolated, cut off, unable to do things you enjoy – not to mention constant pain, time off work (more isolation), weight gain/body image change, loss of confidence and generally feeling like a burden on all of those around you.
It’s been well documented on this blog that I’ve had a bad run of infections this last three months (links below) and doctors prepared me that I’d need to take a break from work after I pushed myself too hard and had three failed attempts to return to work – that each lasted just a few days before I was back receiving medical attention.
Under those and others advice, at the same time I started this blog, not only to give myself an outlet but to give me something to focus on whilst off work, to be passionate about again. I was sceptical, after all, I’ve intentionally not talked about my challenges (it’s been my defence mechanism) but I can honestly say its been a game changer for me. Its given me a new hobby, something to look forward to each day these last few weeks whilst sulking around the house and I have so many ideas for the future of this blog, I’m surprising myself.
I’ve rediscovered my creative spark!
Background reading: http://joelvsarthritis.co.uk/2019/12/16/humira-update-no-2-mixed-emotions/