When nothing works.
The 22nd November (yesterday) was a ground breaking day for me. It’s the day I realised and truly embodied the fact that now is all we have. It’s been a year since I was hospitalised for my colitis. A year since the pain became daily, I lost my ability to freely choose how I spend my days, I stopped my favourite gym class, I stopped eating a huge amount of foods and became much more ‘home bound’. And I find myself here today, with terrible symptoms and a series of failed treatments and drugs behind me.
I’ve been angry recently. Really angry. Mainly at the fact it’s taken a year for the doctors to get me on a medicine that it most likely going to work. I’ve jumped through hoops, had multiple drugs and experienced a multitude of mistakes through the process that have left me at times feeling alone, lost, gaslit and deeply concerned I will never get better. I have had to be completely on top of my treatment, chasing tests and responses and pushing at the time to ensure each step is required to get me where I need to be next.
But yesterday, I was free of this anger and a deep peace and acceptance came over me. A acceptance of where I am and how I am feeling. That things may not change anytime soon but that that’s OK. To get on and fully embrace life.
I’d started a new PT. I’ve lost a huge amount of muscle from being less active and taking steroids and for all aspects of my health I want to find a way to be stronger within my current colitis boundaries. So after about 10 years of saying I would, I finally learnt how to lift weights. I got myself to the gym despite the pain that had had me bent in 2 that morning. Despite not being able to eat and fuel myself due to nausea. I had THE BEST time in the gym. I bounced out with the realisation that I’m not getting better anytime soon and I have to live the life I’ve got now, despite the restrictions. No new news that exercise is one of the most powerful brain tools there is…
Nothing has worked so far to heal my colitis flare/s and now even the steroids aren’t working. I’m stuck. I start a new drug, ‘Ustekinomab’ next Thursday. I’ve been waiting and dreaming of this drug for a long time, not least the 10 weeks since I left hospital. This should be the one. A drug that I can take for a long time to keep my flares at bay. We’ll see. This drug doesn’t work for a huge percentage of people that try it. It takes 2-3 months to work. So nothing’s changing anytime soon.
If I want peace and safety, which is crucial to healing my colitis. Acceptance is everything we have. ‘What can I control? What can’t I control’, the questions I most commonly ask myself.
I’ve been through a year of healing. Trying so many things to get better and, despite how I find myself right now, I know and deeply believe I am healing. Every day, the habits and actions I intentionally take, scienfifcally backed to help my colitis are working. They’re taking the time they need.
We go…onwards and upwards, always. if you’re here with me and you’re able to enjoy each day. Take a moment to be so thankful for that.
L x