Wednesday 6th January 2016

8am – F*ck up clinic

Slept marginally better last night but so fed up of waking up constantly, tossing and turning. T was on nights so I didn’t have to worry about waking her up, which I think helped.

Tomorrow morning I will have my first follow-up clinic appointment since I’ve been discharged from hospital. On the letter it says calls it a ‘F-UP clinic’, which may or may not be apt. I had thought that I was guaranteed to receive my next dose of Infliximab but it seems like Dr. S wants to discuss this with me at clinic.

Not sure what his thinking is, as this was all relayed to me by my IBD nurse. I told her on Monday that my symptoms were much better but that I had a delayed hypersensitive reaction on Christmas Day. Perhaps she mentioned the latter point to Dr. S and he’s cautious about giving me another dose unless its absolutely needed.

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Saturday 2nd January 2016

12.10pm – the monkey on my back

Saturday afternoon sitting at home on my own while T works – how strange. Spent the past hour or so researching Infliximab and the Equality Act online, getting geared up for a battle with school.

The Deputy Head (DH) and the Head at school are giving me the silent treatment since I emailed them to say I would not be back at work for the first week of spring term. I’m finding it really hard to not churn the things I’ve said (or plan to say) about my illness over and over in my head. At times I feel guilty, like I’m making excuses for myself but on the other hand I know that rationally, I deserve to take the time off I need to get better. Why do I feel so in thrall to my work?

Last night I researched side-effects of Infliximab and it seems as though during clinical trials there have been occasions where people have had delayed hypersensitivity reactions. In fact, the Crohn’s and Colitis UK website now has a memo about the different types of reactions people experience. These reactions include arthralgia and lupus-like symptoms, so the severe joint pain I experienced sounds a lot like it fits the bill.

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Thursday 24th December 2015

3.45am – today’s side effects, brought to you by Infliximab

Good news – I’m free! Bad news – I feel like shit.

Well, when I first woke up (at 1.15am) I didn’t feel bad; rather, my mind was racing – I felt as though I had slept a lot longer than three hours thanks to that viscerally wired feeling you get as a steroid side-effect.

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Thursday 17th December 2015 (I think)

8.40pm – losing my metaphorical sh*t

There I was thinking that people who have panic attacks are utter losers, when I found myself getting so wound up and upset this morning that I could feel my heart pounding out of my chest. And it hurt.

In between my best attempt at yogic breathing and chanting ‘hakuna matata’ in my head like Pumbaa on speed (to keep myself from boiling over), I spent much of the morning sobbing. To myself; over the phone; to the healthcare assistants; to the nurses.

The icing on the cake was when the doc who introduced herself as the ‘SHO’ (I googled this and it’s means she’s a junior doctor currently in training, at which stage I don’t know) and asked me if there was BLOOD IN MY POO!!!

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Wednesday 16th December

6.25am – an experiment in sensory deprivation

We are scarily close to a full week in here. Not what I had imagined at the start. How much of this is based on the slow pace of, well, anything happening in hospital or the slow pace of my treatment, I don’t know. As with most things; it’s probably a bit of both.

Outside of hospital, yesterday was a bit of a nightmare day for T because workmen left a big gaping ‘RAINWATER THIS WAY PLEASE’ hole in our flat roof after they went home last night. Seven panicked messages from T followed along with a woman-on-the-edge-of-a-nervous-breakdown call (which given how much of a cool cucumber she is usually, was quite upsetting). I knew things were getting bad.

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