When I awoke one day with a tight stiffness in my toes I thought maybe I’d slept funny. It was as if they had shrunk overnight and my bones were now ill fitting, the available space had changed.
When it started to journey north finding my knees and elbows I realised it was time for me to find some answers. As tests commenced and remedies were offered it became clear it wasn’t going away. In fact, the symptoms were not satisfied with their efforts so far, and thus extended their prowess to hips wrists and shoulders with a swift wallop.
This had my attention. In fact, it had my mobility, my sleep, my work and was making proper in roads on my mind.
Pain and fear came for me
Pain. I hate the word and the power it has over me. Then fear – fear of pain is its wingman – its partner in crime – and together they came for me.
I embraced all the drugs I could munch. I couldn’t exist any other way. From the Tramadols to the Co-codamols nothing touched the sides and my on-going blood results kept confirming it was raging through me like a demon.
A typical ‘flare-up’ felt like hot lead being poured down the back of my neck, solidifying quickly to leave a weight hard to move against. Sharp swords had been installed and would slice me if I dare move. However, it was impossible to be still as pressure in the joints forced me to move, like they would explode if I didn’t.
I couldn’t let Rheumatoid Arthritis defeat me
The diagnosis was Rheumatoid Arthritis, a chronic inflammatory disease. As I sat in waiting rooms, observing other patients, their disabilities and surgeries, their attitudes, their defeat – the horror of what path I was on and where it would end, sunk in.
I had been spending my nights wandering around the kitchen table with my head in a bottle of whiskey seeking unconsciousness by any means. I was saved by Prednisolone – steroids – the only thing that worked for me. This is by no means a good thing to take but I didn’t care – I could move, sleep and function and the comfort of today was the only thing that mattered.
Rheumatoid Arthritis doesn’t define me
I decided then that this was not going to take up room in my life. I wish I could tell you that my mental strength won out but it was drugs – it’s still drugs.
I also decided I was not going to become my disease. I didn’t want to discuss it on forums. I didn’t want sympathy and I wasn’t going to give it parts of my personality. It wouldn’t be all I talked about at parties, as people listen to negative dark rhetoric, with heads tilted sympathetically to one side. Not me.
Mostly I learned that amongst all the parts you can’t fix or change you can choose how to cope – choose your life, choose your family, choose yourself. The disease is not you – don’t let it become so.
Accepting the bits I’d lost and looking after the rest
I won’t bore you with my medication journey, or its highs and lows. It all gives the disease air time – something it does not deserve – it remains the enemy and occupies the smallest part of me I can find. I’ll just say I’m the recipient of some fantastic biological drugs and am mostly pain free – I’m a lucky one.
Now the task in hand is just to stay that way. Part of that was accepting there were things I couldn’t get back. While I was sampling a plethora of medication cocktails to win the battle for disease control, parts of me were getting thrashed. I lost out on my right hip and my wrists, both of which are crumbling ruins leaving some limitations on movement.
Rheumatoid Arthritis was my greatest teacher
As for the rest of me, there is everything to play for. This body is the one set of kit that I have! I need it to age with me, not ahead of me. It can’t wear out first – we have to be on track together.
So I take a yoga class every week and try to practice a little every day, even if it’s only five minutes. It feels great to just check everything out via stretching it all, from head to toe. I get a sense that my body appreciates me taking a mental register that everything is present.
Food is the next way to nurture optimal service from the body. I love eating raw and snack on as many colourful fruits and veggies as I can. I love raw nuts too and natural Greek yoghurt (cheeky dollop of honey included). Drinking water or peppermint tea also feels like a tonic. It’s all very unfussy and basic.
Simple things are what I’ve come to appreciate most…
Like climbing into bed at night and being able to lie still. To stay there motionless and uninterrupted is a joy that will never grow old and I feel it keenly every night.
I appreciate walking upright with a spring in my step. Sitting comfortably by the fire to watch Netflix nonsense with the family – none of it is wallpaper.
And to keep these precious things, all I have to do is take enough care of the nuts and bolts and I am certainly sharpened to their needs. I am aware of all the parts of me in a way I probably would never have considered before. So, I guess that has been Rheumatoid Arthritis’ gift.
I don’t seek to be pain free, I just need to have relief and enough working parts to keep going. What has gone is gone and there is no point looking back – I’m just not going that way.