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On the first of November I started tracking my activities at the suggestion of my physical therapist. She thought that by looking at what I'm doing she might be able to make suggestions about where to make changes to take better care. My tendency with this kind of thing is to go to my computer and design a spreadsheet of some kind to track whatever. I resisted the urge and just wrote down the things I did each day including my migraine.
I took my hand written paper in with me this morning to PT to see if I was on the right track. Turns out she was looking for more detail so I'm headed to the computer to take it too far. But the lists I had put together started a conversation about the things I am doing. She doesn't think I should be ironing and is concerned about the stackable washer/dryer being bad too. Why don't I just take everything to the cleaners? Um...because we can't afford to pay someone to clean and press our clothes. She and her husband make really good money and I don't know that she realizes how unrealistic that is. We can't afford that kind of thing so I will continue to do laundry regularly and iron a thing or two as needed.
She also made suggestions about what I could do to get out of the house, organizations I could volunteer with. I would love to get out more and I appreciate her efforts to get me in involved in something I'm interested in. I just don't think she really gets how much I struggle just to get basic stuff done at home. I don't think she understands the migraine fog or how debilitating they can be. Even though I'm able to get stuff done and it doesn't look like I get much done each day, that doesn't mean that I have all kinds of spare time. When I'm not doing something it is for one of three reasons.
1. I'm recovering from doing something
2. I'm preparing to do something
3. I am treating a migraine
I don't try to explain this to her. Partly because I don't know that someone who enjoys good health can really understand and partly because I don't know that I have the time or energy to really explain it. I'm not convinced that I'm doing the right thing by just politely taking it in and making generic comments like "oh yeah, that sounds like a great organization."
What do you ladies think? Should I try to explain what my days are really like or not? Have you had similar experiences?
I try to go for blunt honesty in these situations. Sure, it's uncomfortable to explain your level of disability to someone who doesn't really get it, but maybe she'll come up with suggestions more suited to your needs if you let her know how it really is.
ReplyDeleteHilarious that she thinks everyone can afford to send everything to the cleaners. Or maybe you just ooze affluence. ;)
Explain away sweetie! It is the only way she will understand, if even then. You may just be wasting your breath, but it's worth a shot. I have a very difficult time explaining my type of pain to my rheumatologist. Since he is an "autoimmune specialist" I expect him to have some sort of understanding of the people he is treating. Sometimes I think they just don't get it! Good luck! I hope she can understand!
ReplyDeleteI have had similar experiences, and it's a difficult decision to make. It does take a lot of time and energy, but I think you should try to explain to your therapist how much the pain really affects your life... what your days are really like. If she doesn't know (or have even the most surface-level understanding) how your life is being affected by the pain, how can she really try to help/treat you? True, she probably won't really understand, but I think you owe it to you and to her to at least try. Good luck, dear.
ReplyDeleteI totally agree with you guys...my head tells me that's the right thing to do. I'm sort of intimidated about doing so because of the situation. We are always in a big open PT room where anyone can hear what goes on - and she is a loud woman who doesn't wait until the end of your thought before chiming in(loudly). But it is important. Maybe my new activity log will be a good starting off point.
ReplyDeleteThanks for the great advice ladies!
If you need to, ask her if there is a smaller, separate room that you can go to so you can talk to her privately for a few minutes. There should be something like that available.
ReplyDeleteI was going to suggest what Jamie said - a smaller more private place would be best. Also, that would mean that you would have her complete attention. She's probably used to being loud so that she is heard over the din of a busy physio unit. Perhaps the quiet of a small room, and the extra focus on her part would help her to understand.
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