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.

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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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