It's not new really. It's just worse. And today is a bad day and I'm generally frustrated and needing something interesting, and instead I'm feeling one more limitation on my life. What now, you ask?
Well, I take a total of 7 prescription meds. Of those 4 have warnings about heat and/or sun exposure. They aren't kidding. Lithium levels are affected by heat. That at least I can combat somewhat by drinking lots of water. A liter of water used to buy me an hour or two. Depakote and heat don't mix at all for me. It wasn't bad on moderate doses, but when I hit the high dose I started being able to tolerate only a few minutes in the sun before turning bright red, feeling dizzy and becoming nauseous. It's gotten even worse this year, to the point that just being at work where the air conditioning is limited can make me feel quite ill and I've had a few dizzy spells. Once I thought I was going to faint. So essentially I am stuck inside at all times unless it is below 80, and 70-75 is more preferable.
It's been a hot summer. Circumstances have also made it a sort of boring summer for me. Between being sick with bronchitis and then having Lamictal rash I lost 4 weeks. I have barely done anything for fun and have only been to my mother's about once (she lives very close and I usually am there nearly weekly). Today it really hit that I want to do something and there is nothing I can do. There's a festival here and I just wanted to walk through. It seems like the whole town was up there earlier. But it's over 90 and humid, so here I am.
I grew up outside. I was a camp counselor, the nature counselor. I was 22 before I spent a summer at all inside, and that was because I was in school. Even that summer I was outside plenty. I love canoeing, hiking, gardening, just being outside. And I've given it up for this illness. Last summer in therapy we made a list of things I'd given up and worked on making peace with them. Well, we forgot one. Last summer it was a bit cooler and wetter, so this wasn't as bad. Two years ago I was stuck inside constantly. That year I actually was forced to spend most of my savings on central air because I was having mood swings from my house being too hot for me to sleep in.
I'm angry. This is something that isn't likely to change; it comes from meds I'm likely to remain on indefinitely, and most other options have the same side effect anyway. So I've spent most of today just like my cats: looking out at everyone else going by. And crying. Actually I'd feel better if I could just cry for a while, but right now I'm still adjusting to my new depakote levels and high levels always result in it being very hard for me to cry and let emotion out. This has actually led to my quitting meds for several days before just to get relief. (Not recommended). It will get somewhat better but not totally. However I generally cry easily in therapy so I just have to make it there, I guess.
I'll recover. I need to arrange something to look forward to soon. I don't take vacations in the summer because I'm so limited in what I can do. Just as the sun sets I usually can be outside for a bit. I hope to plant a couple bushes tonight. We'll see though because it's still pretty hot out there. Plus there are those stupid fireworks. Because we live in a valley each boom echoes many times. I get to jump many, many times.....
I see retreating to my hammock in the icky basement in my future.....
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3 comments:
I think we have all lost things to this illness. I'll never have children. I gave up a career in research psychology. And yes, I don't do too well in the heat either, although it is not as bad as your case. I'm planning on going backpacking this fall. I figure it is just too hot in the summer. I spend a lot of time in air conditioned places in the summer. There is always the movies, or a coffee house, or a mall, if you need to get out of the house. And sometimes I can walk in the evenings when it cools down. Be an OT: focus on what you can do, and how you can modify things so you can do them! Take a vacation to Canada, do you hiking in the fall, find all the air conditioned places you can go in your area. Sorry, don't mean to lecture. Just suggestions
See, those aren't places I can go either. I can't stand noise and crowds 99% of the time. (just to handle the fireworks being set off over a mile from home right now I'm wearing expensive soundblocking headphones). In that regards outdoors is much better. But something like a mall is too much stimulation, and movies are for my very, very best days only, and then I get through wearing earplugs. Plus it has to be a movie that my cognition can tolerate because I just don't sit still for 2 hours. I think I've seen one movie in 2 years, maybe 3. I can't even watch DVD movies because I watch in segments and by the time I go back I've forgotten what's going on. You also have to remember that I live in an EXTREMELY rural area, so that adds to the limitations. This is not NYC. This is not Kansas City. Doing anything requires being in the car, and if it's hot enough, I can't even stand that easily (my a/c is not powerful).
I do get to do things in the fall and spring as long as I can pick my days. And that's dandy. Tonight I even got to work in the garden some just before dark. But I also need to be sad about today, and today I paid a hefty price to stay healthy.
I realize I sound like I'm pouting and I am, but I need a break. This was a hard week thanks to heat (hot days make me work slower so I work longer so that the week is insane) and the holiday and having to drive to a facility an hour away from my usual one (which is 45 minutes from home) and an hour and 45 minutes from my house, twice. I got so tired yesterday I thought I was going to lose my ability to speak. And that was before I got involved with a patient the PT had told the aides to stand pivot transfer without considering tub transfers were impossible, resulting in one of the most unsafe transfers I've ever undertaken. I have sore muscles head to toe from that.
Eventually we'll get a day that is cool enough for me to get to enjoy a few minutes of it, and I'll be less resentful. I really am a lot better after planting things and making my garden look much healthier. But today is just a day I'm stressed out about the entire illness thing and being stuck was the very last straw.
Next weekend I'm going to the city to see my doctor. I may stay there Friday night, just for a change of pace. And if all else fails, just 2 more months and I get to spend more like 2 hours outside in the evenings.....
Tomorrow my post will be up with pictures of me and my BEAUTIFUL sunburn from being outside. Go me. It hurts ... if you want to feel like you've been outside though, check out the pictures and pretend you went hiking with me! <3
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