26th August 2017
I’m not going to lie, I’m a steaming hot mess right now.
It’s been a tough few months. I haven’t been writing much, and I’ve been feeling guilty about that. I have been calling in sick to work a lot, and I’ve been feeling guilty about that. I have not been leaving the flat much and well… you get the idea.
What I have learnt is that the path to remission is not easy. It is, however, easy to be hard on yourself.
I have crohns disease, it’s difficult, painful and gross and inconvenient in every possible way.
The thing is around Christmas time I was pretty confident that I was on the right track for my meds. I was on a drug called Adalimumab (Humira) and thought I would be on my way to remission.
Fast forward past the horrid allergic reaction, skip the months of emotional distress and my latest MRI reveals that no the Crohns is not improving, it has in fact spread.
Not fun. So not fun.
So now I’m on monthly infusions of a drug called Vedolizimab, daily tablets of Azathioprine and Rabeprazole, and a two month treatment of steroids known as prednisolone.
(There I am, looking fabulous and ravising attached to my Vedo infusion. I actually use the same room each time but when I joked about decorating it with Fall Out Boy posters the Ward Sister looked at me as though I asked to sacrifice a lamb. Ah well. )
And I have decided to take a break. It’s been a difficult decision for me, and again I feel guilty. Guilty for being that person who doesn’t push through and just get on with life, guilty for knowing that even with this time off I may not get better, and guilty for leaning so heavily on the people around me.
But it’s time to face facts, through the two years of having this illness I have tried to juggle my never-ending list of symptoms with going to work and organising all my various doctors appointments, tests and different drug trials, alongside trying to actually live my life (ie. plan my wedding, see my friends, not become a weird hermit-like creature that eats their own hair.) .
I am now on the most expensive drug the NHS has to offer and if this doesn’t work I’ll be looking at one other experimental drug and then, maybe, surgery.
I really, really don’t want surgery.
I’ve tried working through it, now it’s time for a different tact.
I am taking a few months off work to simply let all these drugs pump through my system. Come December the hope is that my next lot of scans will show some improvement.
So I’m dubbing this “The Recovery Project.” (As it sounds a lot more proactive than taking time off sick and seeing what happens.)
Two years sounds like a long time to get used to living with an illness. But Crohns is unpredictable and symptoms are far more varied than a simple stomach ache. Before having Crohns, I was healthy. I never had health issues until suddenly I did, twenty-two years of health and then almost over night I had to get used to a whole knew way of living. I’m still learning what I can and can’t do. And the medication I’m on scares the crap out of me, they come with symptoms and side effects all of their own.
So this is me, trying to put my health first. Both physical and mental. This is me raising up my hands and saying I need a break, and trying my damned hardest not to feel guilty or weak for doing so. I’m going to spend the next few months resting while my medication does the real work.
And I’m going to write, so maybe that’s one less thing to feel guilty about.
To all you fellow IBD warriors out there, you’re not alone. You might feel weak for not being able to live how you think you should…but there are other ways to be strong. Strength is sometimes simply being able to put life on hold and admit that you need help.
Here’s to the Recovery Project!
My best wishes to all of you…