My pain has been really bad lately. I can tell I’m really not feeling well when my nails look like crap — I love having painted fingers and toes, and always do them myself — and I begin forgetting things. Yesterday I had to turn around and drive home because I could’t remember if I shut the door — not locked it, but shut it — I fed Jax a second breakfast, and I can’t remember the third thing I forgot… It will come to me by the time I finish this.
I have decided that our next election I am going to really, really pay attention to healthcare and making it a top priority in how I vote. I’ve changed around insurance plans and being without physical therapy for the rest of the year sucks. The thing that frustrates the hell out of me is that I am in pain and trying to fix the problem by doing something that is good for me. I haven’t gone on medication to manage my POTS (Though I do think some people can absolutely not do without it and need to do anything that helps them have any semblance of a normal life), and I work hard to try to be as pain-free as possible. There are a few things that frustrate me. First, insurance doesn’t cover as much PT as I need in a year. I really have to figure it all out way in advance and go without it for periods of time to make ends meet. At some point my pain is going to go from a managed 3-5 with physical therapy to an 8-9 range without it*. Working out and getting hands-on work done is a key part of having me feel better than I do now. I never feel normal, but my pain is at least being managed. Second, PT is harder to get than medication and that makes absolutely no freaking sense to me. If there is a way to actually manage things without taking six different prescriptions I want to do it. Part of the complication of having a chronic illness is looking at your own symptoms versus what side effects medications will have on you, then picking the lesser of the two evils. You also have to weigh the pros and cons of being on something long-term. It makes absolutely no sense to me why doctors are able to prescribe something that I have to consume that will only temporarily put a bandaid over the problem, rather than trying to chip away at all the issues I have with the natural way of physical therapy. I am very dependent on going in for my visits, as I get terribly stiff and have a lot of pain when I miss more than a session, but I feel like I am making progress in a few small ways at a time. When I can’t go I start deteriorating and taking several steps backwards, even with the programs I do on my bedroom floor and at the gym down the street. I hate being dependent on anything, but having a chronic illness has really been humbling.
I feel like I have more freedom when I am feeling better because I do. I can do more when I feel better, and even at my very best I’m not at a normal 28-year-old level. When I talk to all of my grandparents on the phone, I feel like we relate more than friends my own age when it comes to how we feel. We are all in pain in one way or another, and can’t do as much as we used to be able to. I am scared of getting older and having the normal wear and tear of aging, but maybe they’ll have a cure for POTS by then. I don’t think about that often because it doesn’t do me any good to worry about the future, and I continue to focus on making myself get stronger and managing my symptoms on a day-to-day basis. I figure I’ll just worry about problems as they come to me and try my best to be healthy and prevent anything from deteriorating further.
Finally, I am frustrated because by asking to go to physical therapy I am not asking to do something excitingly fun. Sure my PT’s are all so incredibly nice and fun people I would totally be friends with outside the clinic (Shoutout to, Melissa, Hilary, and Jackie for being the absolute best!), but it’s work and it often hurts a lot when I have to get poked at while I am in pain. The benefits are feeling astronomically better, though, while I am going on a regular basis. So, my third and final annoyance is the fact that I can’t go to get help to have a shot at having even remotely close to a normal life. My quality of life when I am in pain is not good. I constantly feel like I need to throw up from the pain, but don’t. My usual level with treatment is a consistent “I just went on a long run” kind of pain, with a few sharp and gnawing pains here and there, but what I’ve been having lately is several times worse than that and blaring a lot louder. I often find myself having a hard time focusing on what people say to me because I can’t seem to get past thinking about the coat hanger pain that consumes me. I can never drive for more than about fifteen minutes at a time without feeling some sort of pain, but now driving makes me want to cry because of how much it hurts to be behind the wheel. I’m back to having a hard time figuring out how to be productive and what I can do every day because everything hurts.
I still don’t remember what I forgot before, but maybe once I can get taken care of my brain can start focusing on normal little tasks instead of honing in on how much it hurts to do anything. Speaking of which, I can’t sit at this computer any longer or my shoulders won’t feel okay in time for Christmas. I’m going to go spend some quality time with my foam roller and hopefully be able to get some sleep tonight!
*I think this was obvious, but for anyone who doesn’t know, pain is often measured in a scale from 1-10 in the medical world because it’s a little easier to articulate how you are feeling that way.