It’s been a tough return to work. It wasn’t exactly work’s fault. Granted, there were a string of irritants or issues that arose throughout my working week (and I got my pacing all wrong and am still struggling to figure out what the right amount is for me these days).
Instead, it was all the other things going on.
I had my first Stelera injection on Tuesday. Providing everything goes well (i.e. symptoms remain manageable/improve and my blood work doesn’t go weird), I’ll have one of these injections every 8 weeks. I have to do it myself. In the case of the first one, a nurse was meant to come to my home to basically watch me and check I didn’t have a severe allergic reaction. Despite it being tentatively planned for 8 weeks, I never got the call to say when they would visit so I phoned my specialist IBD nurse at my local hospital and she told me to go in and she’d watch me instead.
Luckily, she’s lovely and while it took up some work time to head into the hospital, I much preferred her being my witness.
The injection itself was fine. Weirdly painless although a bit mentally unsettling having to inject yourself but definitely something I’ll have no problem doing in the future. Just a bit stressful having it loom over you and the hassle of going to the local hospital (and the worry given rising COVID numbers).
As well as that, I’ve somehow managed to get a COVID booster shot lined up. I’m amazed too. Effectively, the same IBD nurse put a good word in for me and phoned the nearby mass vaccination centre and now I’m booked in for Tuesday morning. It should be some peace of mind. I suspect I’ve been bumped up the list because my recent blood test results indicated that my white blood cells aren’t where they should be for fending off infection.
However, continuing the COVID theme, I had a brief scare. I got ‘pinged’ by the COVID app. Turns out when I went for a haircut last week (a risky choice but I hadn’t had a haircut in over a year and I looked and felt a disaster for it), someone in the near empty salon (I deliberately chose the end of the day) had COVID. So, I had to go for a PCR test in an airfield near me and wait it out. It was fine but stressful. I regularly have joint aches, headaches, and a weird temperature due to my meds so it was tough to know what was going on!
AND on top of that, it’s freaked me out. That and rising case numbers, I feel increasingly isolated and like any time I do consider a trip out (anything that involves people is basically a quick trip to a small M&S Food Hall about once a week, or I see one friend every couple of weeks), it’s effectively a suicide bid on my part.
I know I should be ok as I’m double vaccinated and even with no immune system to speak of, I should avoid hospitalisation and death but, well, it’s all should, isn’t it?
On the other hand, I’m constantly left with that thought that if I did contract it and the worst happened, I’d be one of those people where millions would say ''Well, they had an underlying condition, didn’t they?’ and dismiss me as, basically, irrelevant. That’s a pretty horrible thought to have kicking around in the back of my head. There’s no reason why I shouldn’t live to be as old as anyone else yet so many people dismiss underlying conditions as a ‘well, they were going to die anyway’ when it comes to COVID. All I can see is that attitude growing while I live in a country that is depressingly dismissive of the whole thing. It’s a deeply unpleasant thought that I can’t shake off. It shouldn’t but I know it’s affecting my self esteem.
That and still grappling with knowing my life course has changed a lot because of all this, and feeling like there’s no end in sight, I’m struggling mentally. How do you work on dealing with your new life when you can’t actually go out and live it safely? I’m in an awkward holding pattern right now.
I’m doing a good job of fighting on. I keep being told how resilient I am and how well I’m coping but I really wish it was easier. I make the best of it. I find joy and yet deep down, I feel frequently lonely, needy and scared for the future. I’m still waiting for everyone to abandon me, basically. Rightly or wrongly. (Probably irrationally? Hopefully?)
It’s a rough battle. I’ll get there but I could do with my brain being more on my side. Being able to shake things off better and so forth. Of course, it’s tough to do when the outside is your enemy for the foreseeable future and you’ve seen enough of the indoors to last 18 months and counting.
For now, I shall spend the weekend playing games, reading books (one of the most calming activities I’ve found lately), and partaking in a cold and distanced walk or two. As always, it’ll do for now.