I didn’t really write yesterday, but I think I can handle today’s blog prompt. It involves numbered lists, after all — and I love numbered lists.
5 Challenges & 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.
- Increasing Pain — Not necessarily in intensity but in frequency and duration. Several years ago, I estimated feeling pain for about two weeks out of every month. That gradually increased to two and a half, then three, weeks. Then “most days.” Now I can’t honestly say that I experience days without endo pain. There are low pain days and bad pain days — and in-between pain days — but saying goodbye to the reality of pain-free days has been rough.
- Decreasing Mobility & Stability — My hips and back are stiffer more often, for no apparent reason. Not like, I worked them hard the day before or I slept on them funny. And unlike stiffness from those types of causes, I don’t work out of it from everyday movement. It’s also more often that I can feel one of my pelvic or hip nerves cut out from under me for no particular reason. Just working and then — whoops! — not.
- Giving Up on Menstrual Suppression — For a long time, one of the goals of my endo management has been to try to suppress my menstrual cycles, which has resulted in multiple methods of fail. I bleed all the time. I bleed all the time with bonus side effects. I bleed more normally, but the thing that regulates my bleeding falls out of me. I bleed sufficiently erratically that I have no idea that what I’m actually experiencing is a chemical pregnancy and miscarriage. (This, by the way, is not recent.) There was always the implicit promise that if I could eliminate the period-like bleeding, then I could also eliminate the pain. Well, I can’t and I can’t. My current best hope, it seems, is to wrangle the bleeding — and therefore the worst pain days — into a generally predictable schedule.
- Invisibility — This encompasses two areas that sometimes conflict. One is my frustration that since I usually don’t appear to have any kind of impairment, then people — coworkers, people in the general public, sometimes friends — expect me to perform as if I’m healthy and able-bodied. Or that they expect me to prioritize my energy expenditures according to what makes sense to them (e.g., going out in an evening versus going for a run). The second is my discomfort with admitting — in person, to people outside my intimate circle — that this is not the case, as well as negotiating what that entails in concrete terms.
- Trying to live up to everyone else’s expectations and blaming myself when I can’t.
5 Small Victories:
- My Primary Health Care Provider — Who is unequivocally on my side. As such, she addresses what concerns she can and tries to refer to specialists when she can’t. (Though admittedly, the specialist referrals have been a bit of a crapshoot.)
- Yoga — Sometimes people ask why, if I’m dealing with a chronic pain condition, I gravitate toward such a vigorous practice. The answer is that putting my body into a variety of postures that each demand strength, balance, and control, I am helping my “trunk muscles” (core, hips, thighs) compensate for the decreasing mobility and stability.
- Tax Refunds & Flights — Recently, I received my tax refund from the government and used it to purchase a plane ticket to see my mom and sister this summer. Between the quantity of the refund (I know, I know — it means I’ve been letting the government take too much money all year, but whatever), scouring the Internet for the best rates, and admitting to myself that I Need This, I was able to get seats with extra room on four shorter flights (2.5 hours + 2.5 hours each way; as opposed to 0.5 hours + 4.5 hours each way) rather than risk the Dreaded Middle Seat on the standard flights from the major carriers at my local airport.
- Carpooling — Even when I end up taking the bus home, somtimes it is the world’s biggest relief to know that I do not have to drive — and therefore potentially risk my own and everyone else’s safety — while in pain. (Or while on narcotic pain relievers, which is legally a bigger conflict.)
- I want to say my current hormonal birth control pills — but that remains to be seen. There is a reasonable chance, though, that they will accomplish the predictability task set out for them.