Compared to how much time I spend being bodily ill, I don’t write about it very much. Partly that’s because I am so very bored with the whole experience. Partly because it’s complicated in all kinds of ways and I’m not looking for advice.
One of the things I learned fairly early on in life is that if you are ill in a way people understand, they will help you. If you are ill in a way that is not understood, then you might not get any help. You might be told off for making a fuss, being lazy, trying to get out of PE and suchlike. Never mind that I had to give up dancing classes, I was told it was all in my head and that there was nothing really wrong with me. That wasn’t true, but it stopped me taking myself seriously for a long time and I learned to push through things and not make a fuss. A lot of people go through similar experiences, so I increasingly feel that it is important to talk about this stuff.
At this point in my life I know that hypermobile bodies are expensive to run and easy to hurt and damage. Low blood pressure, grumpy lymphs and heart palpitations all go with the territory. What I suffered with as a young human all makes a lot of sense now. It is easier to bear as an adult, knowing why I get so tired so easily and why so much of me is wonky.
I’ve thought about getting a diagnosis. Given that all of my joints are hypermobile, in theory it shouldn’t be hard, but I know from other people that unless you get lucky and find a GP who knows all of this stuff, it’s a bit of a slog. Many GPs are not open to people turning up with any kind of self diagnosis, that often makes the process harder, not easier. I’m not sure there’s much to be gained. There’s no treatment available for crappy structural collagen anyway, so it would be a lot of effort to go to in order to have to manage it by myself anyway.
I’ve spent the last few years struggling with low blood pressure. Complicating factors include preposterous periods – there aren’t many options for dealing with those, but I am looking at them. There’s not much good information online about managing low blood pressure. Things like ‘don’t stand up too quickly’ are typical. To manage it, I have to be careful about what I eat and drink, alert to the peri-menpausal night sweats, to gut failure, and anything that makes me cry. Some days I manage better than others.
Currently I’m looking at the relationship between other aspects of my body chemistry, and my blood pressure, because there may be other factors to explore. I’m lucky in that my ability to read and make sense of scientific papers is fairly good. I know that using Dr Google is risky and not always wise. I also know from experience that there’s nothing like seeing a member of the medical profession for raising my blood pressure, and it’s hard to make a case for having a problem that cannot be measured effectively.
It’s a funny business, having a body, being embodied, and being wonky in ways that don’t have simple explanations and aren’t easy to fix. I try to be pragmatic about it. I study my wonkiness for patterns in the hopes of managing it better. Some days pretty much the only Druidry I can do involves experiencing nature as it manifests in my own body – weird and confusing as that often is.