Update, GLORIOUS update!

It’s been more than a little while since I wrote a blog posts. I can’t even apologise.

My absence is because of my lack of energy. This inherent tiredness is due to taking myself off my medications. No more steroids, no more Mesalazine, no more Imodiums, nothing.

At the start, it was scary. One day I just woke up and didn’t see the point of taking anymore tablets. Just stopped everything, just like that. No real reason, no cause for why it was that certain day – I don’t even remember the day or anything, just the vague notion it was about 3 weeks ago now – but just reached the end of my tether. Done with all the nausea and heartburn and tummy churning noises, done with the joint pains and the insomnia, DONE.

Since then I’ve lost my chipmunk Pred face and I’ve lost my appetite. Finally, something good is happening! I am eating less and loosing weight! Sadly, I am loosing my energy. Its been slowly decreasing day on day, and about a week ago I was at dinner, sure that my blurred vision and lack of appetite and constant V&D were something to be majorly concerned about, that I was extremely close to burning out. I was working full-time, running two Brownies group and organising my CCUK first meeting. It was stressful. I was tired. I’m still tired and still stressed but now I know what is wrong. I’m without medication, I am fatigued beyond anything else I’ve felt.

I’ve got a couple of weeks before I’m back in the Gastro clinic, it can wait. And being so busy has also meant I’ve neglected to tell my IBD nurse of my abscesses. Yes, plural now. Two more have appeared on my inner thigh and are killing me when they aren’t drained. UGH, utterly frustrating and annoying, but I’ve just gotten on with it. Honestly, my Crohn’s has been too bad, up until a couple of days ago. I’ve been unable to control my urges to go whilst out, and even whilst at home, I’m getting closer and closer to being caught out at some point.

Maybe it was slightly foolish to come off Pred and Melsazline without telling anymore, and if I get sick, I well feel incredibly guilty, but I wanted some control back. I want my life back. I want a normal life, I want a new job and be good at coordinating my group without my health being on my mind, holding me back.

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