Saturday 9th January 2016

2pm – Livid. Absolutely livid.

I am surprised that I didn’t come straight home on Thursday and document precisely how angry I was following my clinic visit at the hospital.

The doctor I saw is, apparently (remarkably), the head of gastro at my local hospital. The man was simply awful. He had not read a single page of my file beyond the first page which (incorrectly) stated that I have Crohn’s disease. So when he greeted me with “Alpha, is it? [Small talk with my dad, who was with me, about my name] So you have Crohn’s…”, I was instantly put in attack-mode.

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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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Tuesday 29th December 2015

6am – oh bless, she’s overtired…

Have been up for about an hour now, reading dad’s essay about ‘the sympathetic contract’ between a poem’s reader and its author. Amazed that my brain can focus so sharply at this time of day. I used to be such a bed-bug in the mornings. Old Alpha would be shocked by how I’m squandering all of these school holiday lie-ins.

The really positive news is that I haven’t had blood in my poo for two days straight, so I think the Infliximab might actually be working. I’m glad these drugs are worth the minor side-effects.

Yesterday was a bit of a weird day. I felt exhausted. Perhaps I overdid it – I saw two of my best mates at lunchtime then I went to do last minute Christmas shopping with T. By the time we got back I was pooped, so I had to have a nap, which I never really recovered from.

My emotions were all over the place too. I felt angry, hungry, sad, hysterical (I hate that word but the English language is sadly lacking a better synonym) – the whole gamut of difficult emotions. One minute I was laughing and the next; tears were streaming down my face. I think this is the adult equivalent of as a toddler, wailing to your parents “I’m not tiiiiiired!”, crying, then falling asleep in your dinner. I felt properly crazy. Mum and T ordered me to go to bed, so in the end I dutifully carried myself upstairs.

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Monday 28th December 2015

7.50am – hungover as hell

I had a great day yesterday: no pain or weird side-effects and I think I got about seven hours sleep. Bliss. Today, not so.

T and dad screwed their faces up and begged me to stop talking at the dinner table last night when I remarked hopefully that “This is the last of the pain. I think it was just a blip.” I get it, they don’t want me to get my hopes up but surely being positive is better than wallowing in self-pity?

Perhaps they were right to caution me… I can feel a twinge in my left knee (which seems to be my dodgy one), even through the fug of co-codamol I took at 3.30am for my hangover. Yes, I drank too much fermented white grape juice last night. Dad is such a bad influence.

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Saturday 26th December 2015

6.30am – midnight musings

Woke up at about 1.30am, took another Tramadol because the pain in my joints was returning. Drifted back off to sleep quickly. Woke again at 5am; pain returning – almost couldn’t move again – so took another 50mg of Tramadol. Feeling like a junkie.

I’m getting quite concerned now about my pain management. I want to know if there is anything I can do other than taking painkillers to help alleviate the inflammation. Surely I’m not going to need to take opioids for as long as I receive Infliximab.

Because it’s Christmas I don’t know who I can talk to. My IBD nurse, L, isn’t contactable until Tuesday. My GP surgery is shut today and tomorrow. What an awkward time for this all to happen.


Friday 25th December 2015

10.45pm – I swear, my knees were giving birth

Had the night from hell last night. Woke at 2.30am, after having finally got to sleep at 1.30am once T had got back from her late shift in central, thinking surely it must be at least 5am because I feel super awake.

Then I noticed a dull ache in my knees which gradually worsened. I took two Solpadeine Max at about 3am but these didn’t hit the sides, so that by the time it got to 4.30am I was in excruciating pain.

The only way I could describe it is like my knees were giving birth. The pain was inside them, stabbing, searing away at the joints. No matter what I did, I couldn’t get relief. I tried to deal with it by myself, but eventually I had to ask T to get up with me – I couldn’t even sit and google my symptoms – I just rocked back and forth like a junkie.

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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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