April 2018

I can’t believe April is over. We’re a full third of the way through 2018 already! It seems like only yesterday I was fretting about Christmas and now spring is here.

I can’t believe April is over. We’re a full third of the way through 2018 already! It seems like only yesterday I was fretting about Christmas and now spring is here.

Of course, with the advent of spring… comes exams. I’ve been fortunate in this last month, in that the majority of my coursework was due before the Easter break, so I enjoyed a brief respite from deadlines as I returned to uni. But this hasn’t lasted! I have a test this Friday, and a lab report due the following week. After those, it’s exam season, but I’m not thinking that far ahead yet – I’m just focusing on what I can do today, and in the next few days. Thinking too far ahead is like giving my brain fuel for worry.
Health-wise, I’m still no further along than I was in March… and January… and September. Humira is (still) having no effect, and although we’ve re-added azathioprine, I’m not optimistic about its chances, as I’m on an incredibly low dose to prevent improper metabolism (37.5mg). That’s only 1 mg/kg. Back to Humira for a second – when I last saw a member of the GI team, he said that the next step would be trialling weekly injections, but he mentioned wanting the results of further tests before applying for funding. That means I’ve got to wait for another MRI and hope that it, along with the faecal calprotectin sample I dropped off, prove that I’m still suffering enough for the funding to be approved. I am just so tired, at this point. I have been flaring for three years now and thinking “it can’t get any worse” – and then it does. I am barely functioning as a human being, and nobody seems to care that I am all but bedbound most days – because I am not dying, and therefore I should be perfectly capable of waiting another 3-6 months, no? I can feel myself becoming embittered. It’s hard not to, in circumstances like these.
There is happier news, though. I started a course of psychodynamic psychotherapy this month with a counsellor at my university. I’ll admit that I was sceptical at first, but I’m enjoying the sessions. It’s an opportunity for me to explore my behaviours and thoughts in context, and the most reassuring thing that I have taken away from it is that some of my obsessive thoughts and worries all stem from somewhere. They are from within. They are not some monster controlling me, but they arose when my brain was going through a difficult time and tried to find a way to cope. Now they aren’t helpful as a coping mechanism, so we’re going back and exploring ways I can retrain my brain into preferring more useful strategies. Honestly? It’s exhausting. I come out of every session with a sore throat from all the talking and a headache brewing from all the thinking I’ve done over the past hour. But it’s so worth it, and I am grateful to have the guidance, especially now, when things feel so bleak for me.
So what does May hold in store for me? Well, the end of term, for one, which I’ll be grateful for! Even though I’ll have to start studying for exams as soon as it’s over, I’ll be at home for most of that time, and being able to be near my family in an environment where I feel safe and secure has a hugely positive effect on my well-being. There’s also the Crohn’s and Colitis UK Patient Involvement in Research Day, which I’ll be participating in! I’m massively excited for this. I’m looking to do more as a patient advocate (as difficult as that is, with my ever-worsening health!) and this will be a great opportunity.
Finally, I’m looking forward to seeing spring start to roll into summer. Winter has traditionally been my favourite season, but this past winter has been especially hard on me, and I’m grateful for every day I can look out of the window and feel the warmth of the sun on my face. Summer brings its own set of problems, like sleeplessness, and lack of appetite from the heat… but I’m ready for a change of pace!

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