Sorry for the absence.
I’m still here (here, being somewhere between my bed, the spare bed, or one of two sofa beds that we have in the house).
I can’t quite explain why I went off radar, having been so full of good intentions to update you all regularly, especially as you’ve all been so kind with your messages of love and support since I started writing this blog.
It’s hard to break the habits of a lifetime. I’ve spent years believing that people don’t want to hear all the negative things that are happening with my body, and the enormous impact this condition has on my day-to-day life, my feelings, my sense of self-worth. I’m afraid that you might think less of me if I share some of the more embarrassing things with you, or that you might look down on me or pity me. Several people, over the years, have told me that they hesitate to share their own problems with me because ‘it’s nothing compared to what I’m going through’ which makes me feel as though I can’t be a good friend to them. There are things that I can’t do, but I can usually listen, and I always care.
Having said all that, there’s no point writing this blog if I omit or sugar-coat the ugly bits.
The most recent ugliness started a couple of weeks ago. I got an infection in my bladder (a urinary tract infection, or UTI). It happens a lot – approximately every 6 – 8 weeks so far this year – so my GP, local pharmacist and I have it down to a fine art. I have a stash of sterile containers at home, so that I can take a urine sample to the GP (they can almost always see me the same day), and I start IV (intravenous) antibiotics straight away while we wait for results from the hospital lab.
The recent infection was no different. I felt unwell so I took a urine sample to my GP (who saw me just 4 hours after I called for an appointment). Urine dipstick showed clear signs of infection, which is always a relief. Because of the immune deficiency associated with EDS, my body doesn’t always put up a fight against infection. Urine dipsticks test for signs of an immune response, so if my body isn’t trying to fight the infection, the dipstick won’t pick up that there is an infection present.
Anyway, this time the dipstick showed that I had a big old infection. So I started antibiotics from a small supply that I have at home, and the pharmacist managed to get the full supply (enough for 10 days) by the next day. The urine sample was sent off to the lab so that they could identify what bug caused the infection this time, and which antibiotics would be most suitable to get rid of it.
Most of my bladder symptoms subsided within a few days, but it’s taken me much longer than usual to bounce back.
Getting an infection, even just a cold, can really mess things up. It takes a lot of energy to fight off an infection, and energy is something that is in short supply around here. Seeing the effect of a simple UTI has reminded me how precarious my medical situation is, and how little it can take to destabilise everything.
Using energy to fight an infection means that there isn’t enough energy to go around. I’ve noticed that my muscles have been much weaker, which means that they are less able to hold my joints in the right place, leading to more dislocations and more pain. My digestive tract shut up shop for a while too, so I’ve struggled to eat enough. Not enough food means not enough energy. Too much pain means not enough sleep, which also means not enough energy.
The most frustrating effect of not having enough energy has been the effect on my autonomic nervous system. I’ve talked a bit about it before, so I won’t go into the how/why, but the symptoms have included flushing, sweating/shivering, nausea, tachycardia (very fast heart rate), palpitations, dizziness, blurred vision. For a while, the symptoms were pretty awful even when I was lying flat, but they’ve improved enough now that I can sit up for a couple of hours at a time.
I’ve missed out on a lot of things recently – birthdays, get-togethers with friends and family, and even my husband having a week off work. I miss my friends, and I hate having to miss out on so much fun stuff. The weight of all this felt soul-crushing. Disappointment after disappointment has led me to question why I bother with all the effort and expense of keeping my body functioning if I don’t get to do anything fun. Anything at all, in fact.
I don’t mean that to sound as though I want to just give up and die, but my quality of life has been rubbish recently, and I’m frustrated that there are so few effective treatments, if any, to give me any hope for the future.
I’m feeling a bit better now, so I’m starting to take an active interest in things again. I hope that will mean more regular blog posts (hopefully shorter too, for your sakes).
Until next time…