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Originally Posted by KathyUK
Another was "I am relieved to know I don't have to reduce my pain to do anything I want in life" - yeah right.  |
*headdesk* Sheesh! That's a winner of a question
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Pacing came next and I talked about how I don't like to be seen as a bother and end up overdoing it, not because it's demanded of me by uncaring idiots (although there are people who do try to get me to do more than they know I can cope with, and I let it happen) but because I don't want to be a pain in the backside. I got told off a bit in a nice way and she said that she's going to work with me on this quite strictly - I felt at this point this would give me a fairly good excuse to use with people who want me to do too much lol.
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Pacing is really important. What really helped my daughter at school (she's 16) is getting what's called a 504 plan; it's a lot of work to get one, but once you have one, you have almost complete freedom to tailor things to how it will work for you. And frankly, it gives you a quick, easy thing to say to turn down requests that will be harmful ("I'm sorry I can't do that; I have a medical 504, and I'm not allowed to do things like that"). My favorite
stupid thing that they had her do at school before we got the 504 was leave one of her classes in the middle of the class period, walk
on her crutches with her surgery boot all the way to the office (it's a huge campus) and sign a form saying that she is aware that she has missed a lot of days of school - and then, of course, walk back. She was too shy to tell them to take flying leap, or even suggest that perhaps she could sign the form on her way out of school, so she complied and, of course, missed the next few days of school because of a flare. I hope they have something similar in the UK, because it's a great resource. This lady is right, though - you
have to be able to decline things, even though it really stinks
Try to come up with a short but significant phrase. It's so frustrating, though - people just don't understand that just because you did something one day doesn't mean that you can do it the next day (and it probably means that you suffered for doing it for the next few days).
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I'm getting an appointment with the psychologist side of things soon which I expect to be the less useful part of it (and where those statements came from), so am not looking forward to that although they might help relaxation wise. Need to filter out the "it's all controllable in your head, think pretty things about pain and it will all disappear" mumbo jumbo.
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My middle child has caudal regression syndrome. We found out in my 6th month of pregnancy. I had to be hospitalized for pre-term labor for all of my 7th month. One day, a psychologist came into my room and asked how I was coping with having a handicapped child, and told me to imagine rainbows *sigh* Sometimes these people can be helpful, I'm sure, but other times ...
Anyway, I'm glad to hear that overall, you're finding some good information and resources! Those are some helpful things, and really critical for managing RSD and similar diseases. My RSD is in remission, but I've had CFS and fibro for 30 years, and it's similar in many ways.
Oh, one more thing - doesn't IKEA have those little scooters available? Use a scooter, if you can! Or a cane - I have a cane that I use when I'm somewhere between walking and a scooter, and I put a lot of pretty ribbons on it to make it cheerful and pretty.