Day 13

So, today is the final day of the current Humira cycle.

Yes, it ist just gone midnight on a Wednesday, but I for some reason am wide awake.

This cycle has felt completely different.

I’ve had so many days of feeling so damn good, it is slightly scary. I’m used to my body starting to flag on Day 9 and start seriously running on fumes by Day 12. This time around? Nothing like that. I don’t know if it’s because I’ve been very open and honest about the fact that I have very bad days and very good days – good ol’ Daphne – and it’s now easier to focus on just ‘getting better every day’ with the Crohns. More time spent doing things during the day – ie. work – keeps my body and mind, I suppose too, ticking over. Constantly being ‘on the go’ so to speak is, in some ways, keeping me surviving. But when I think about it like that, it slightly depresses me – is this what my life is going to be from now on? Just finding something, some way to keep me alive? Of keeping me happy? It feels too simple, but yet so damn complex. Frustrating too.

Maybe its me acting up, trying to keep Daphne on the back burner and just be ‘fine’ that is making this feel different. I don’t think I’ll ever really know the honest truth, and every two weeks are different to the last. I guess that is the game we all play; that every single day is different to the one before it and the one that follows it. Nothing is guaranteed and nothing can be predicted. So why not just enjoy my good days and push through the bad ones?

When I think about it like this, I feel so terribly optimistic. I wonder sometimes if it is just my fighting spirit that keeps me in smiles and on cloud hyper most days. (Of course, I write this particular post with my head high in the clouds on a back of a very very good couple of happy days ) But when the feelings subside and the despair is back, then what? Where is my spirit then? Where is my fight? I fucking know I have it, I fought my ass off whilst ‘off sick’ and I don’t plan on giving up any of it now. It just sucks that it disappears without warning some times..

 

It’s *that* time again!

Tomorrow is my Humira injection. All of this week has been building towards this date. Yet again. The further I get ‘into’ this ‘disease’, the more time I spend on this medication, the better I become at listening to my body; the more I know how much things follow a pattern. Today was particularly hard. It is Day 13 of the cycle, possibly the worst day of all my ‘bad days’ on adalimumab. I can usually go without any pain for 9 days on my injections. As soon as we hit the fatal ‘second Saturday’ I feel the energy begin to fade […]

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Twelve Days

So, twelve days ago – January 19th to be precise – I gave myself my second home injection of Humira. The first one since finding out I was in a sort of ‘remission’. I air quote this because the term and understanding of ‘remission’ is subjective and very unclear. It’s variety makes it difficult to form consensus, but I digress. Every day since then I have woken without any pain, without a fever, without much tiredness and without the fear of a set back. Today, no such luck. Belly pain. Frequent visits to the bathroom. Unable to find anything appealing […]

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Today has been a rough day. Nothing major has happened, just lots of small things that have accumulated into something.. bigger. Had trouble taking my medication today – only my iron tablet – couldn’t swallow it and almost choked. Am home alone now until I go back to work and it was scary. My glasses are irritating my nose still, so back to my old pair. Found lots of hair in my brush today, and as pathetic as it sounds this part of my day made feel the worse, had a little weep. The physical parts of my disease have […]

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