On trauma

There’s something weirdly traumatising about chronic illness and disability. That feels absurd to say, but medical conditions are among the things that can elicit a trauma response, and looking at some stuff going on in my life right now, I can say I’m exhibiting trauma response. So that’s fun.

I’ve always been prone to nightmares. They used to be things like “I’m stuck somewhere and need to get home and I can’t” or, most commonly, “I have to get the cats home but all I have is a sports bag and I have to catch the bus”. But over the last year, and especially since my hospitalisation in January, my nightmares have become more frequent and almost entirely medical, usually involving something going wrong while at hospital or someone blaming me for being sick while at hospital.

It’s not even like my hospital stay was bad. The nurses were great… except for one night nurse, who didn’t seem to understand how to handle hypoglycaemia and made a huge production of not being able to push me on her own in the wheelchair, despite everybody else having absolutely no issue with doing that. And insisted on telling me that my heart rate issues were all entirely due to my weight. But I digress.

Hospitalisation is isolating and makes you feel like you have absolutely no control. I wasn’t allowed to keep my medication with me, so I had to rely on strangers to manage my ridiculously complicated medication regime. None of them had ever seen an insulin pump before (not surprising; they’re prohibitively expensive for adults and you have to have them recommended by your endocrinologist, so they’re mostly used by children. I have another rant about that). None of them had heard of hypophysitis and only two had heard of Factor V Leiden. I know they’re well-trained and the care they provided was great (except for that one nurse), but it was difficult to feel really safe under those circumstances. And there was absolutely no privacy. Telling a nurse about your continence issues with strangers on the other side of a curtain is not a fun experience.

And then there’s the uncertainty of having something wrong that nobody seems to be able to get to the bottom of. Cardiologists agree that my heart looks fine. Medication I’ve been taking for over a month to help my heart rate issues doesn’t seem to have made a difference. It’s massively impacting my life. So that’s stressful.

And then there’s the emotional strain. Managing medications – I take 12 different meds at three different times a day, two of which change dosages depending on how I’m feeling on any given day. The pump and CGM have helped my diabetes immensely, but require a lot of management as well, especially since I’m prone to irritated or infected infusion sites and the adhesive of the CGM irritates me skin. I haven’t been able to leave the flat since I got back from hospital, and that’s been extremely wearing. I have to do exercises every day to try to rebuild my muscle condition, which has degraded so badly that I have trouble holding up my phone for long and have intermittent issues swallowing. And I have to ask for help with everything. I can’t get my own food.

So I suppose it’s not surprising that I’m exhibiting trauma response. But it’s something that I don’t see discussed a lot, even in chronic illness communities. It’s not something I really know how to deal with. I’m just having a lot more nightmares and emotional issues and paranoia about being a burden or difficult to handle or just Too Much.

The Engineer asked me, a little while ago, if I was afraid that this heart rate thing was going to kill me. The thing is, afraid is the wrong word. I’m resigned to the probability that I’ve already had more than half of my time. I’m 35; I can’t envision living to 70. I just wish we could figure out what’s going on and how to improve whatever time I have. That’s what I’m afraid of – that it will always be this bad and this uncertain.

I don’t have a snappy ending to this one. It’s just stuff.