First off, I have a bit of info to share on pain management. For years I thought pain meds didn't work well for me because I'd take them, but not experience any pain relief. The drugs would make it so that I was just able to handle it a little bit better.
Several months ago, I started hurting. JR an I had plans to do something later that evening so I went ahead and took some pain meds. I felt bad that I was doing so, because the pain really wasn't bad enough in my mind to warrant the "heavy guns," which is how I refer to anything that's not OTC. That's Over the Counter, by the way.
Imagine my surprise when about 30 minutes later, the pain went away. I'd never had that happen before! So I talked with JR and my doctor about it and got the, "That's what it's supposed to do!" accompanied by the lecture that, really, I was prescribed those meds for a reason, and waiting until I was really hurting to take them was not smart. If I took them when things first start off, instead of waiting in the hopes that it'll go away on its own, which it never does, the pain meds can work like they are supposed to and make the pain go away. So now I'm taking my pain meds a lot more often. But I'm a lot less grumpy. Thus, if you too are feeling pain, do something immediately. Do not ignore it. Pain doesn't tend to go away with some recovery assistance, whether it's cold medicine, pain meds, or a nap.
Next off, a book called Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties by Laurie Edwards. The title is a bit of a misnomer, it's a fantastic book for anyone who's disabled, and also for their loved ones. I strongly recommend it to parents that have disabled children entering their early teens.
While the book talks about some things I've tried to share with other people that have ichthyosis for years such as your skin (or other disability) is not a barrier to your romantic life, it's how you view yourself and your skin that's a barrier. However the book also brought up loads of points that I've never considered.
The most significant topic for me was about learning how to pace oneself. The author said she'd always operated on two speeds. One is "must get everything done and be an overacheiver," and the other is "my body isn't letting me do what I want therefore I must prepare so that when I can move around again, I can catch up." There was no pacing whatsoever. She hadn't figured out how to try and live life without always being in a frenzy of getting things done. She had to learn how to pace herself instead of trying to be superwoman whenever she was able.
Now, I don't think I try to be superwoman anymore. My husband disagrees. He says I still expect myself to do everything and while I recognize I'm not able, I still get pissed at myself that I can't. Hm. Score one to the husband, as he's right. I too, need to learn to pace myself so that when I do have energy, I don't drive myself 'til I drop. If I wasn't pushing so hard, then I might not be as exhausted all the time. It's ok to take things slowly.
I think I'm going to have to work on that for a long time, but that's ok. There are many other excellent things in the book and I can't recommend it strongly enough.
Adobe Field Trip - I was bummed when I missed out on driving for the first of Leia’s fourth grade field trips - paperwork didn’t get processed in time - but I got another cha...
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