A little while ago I had to see a different masseuse than the regular one I've been going to for many years. I told him what I tell to every masseuse, use as much pressure as possible. My muscles are so paradoxically tight on a constant basis that only extreme pressure can alleviate the knots in any way. I've found that most masseuses simply don't have enough arm strength to meet my needs. The therapeutic massages can be very painful, especially with the hip flexor muscles. That's a problem for new therapists because they're afraid if they hurt me too much I won't come back. On top of that I think I'm going to stop mentioning I have EDS because then they become terrified that they'll dislocate one of my joints. He told me if the first appointment goes well he'll use more pressure next time. I didn't mention the fact that I would never be seeing him again since my regular helper was available once more. He told me that most people can't handle a deep tissue massage let alone one with maximum pressure. I was annoyed because I thought I had just finished explaining I wasn't like most people, my pain tolerance is off the charts by now. I'm sick of saying, "I know I look healthy but..." They often think I'm exaggerating. With my regular massages I can't help grunting pretty much every few seconds and when I saw this temporary guy I didn't grunt a single time. It's hard to find strong masseuses these days.
I'm happy to report that the sleep specialist I've been seeing for a few years finally fully trusts me now. My old sleep doctor ran out of ideas for solutions and so referred me to the new one. During my initial visits things didn't go very well. In large part due to certain family members misrepresenting my situation the doctor got a negative first impression of me. When he was falsely told my main issue is sleep hygiene he believed it. Over time I proved the truth of my words, that medications simply don't work properly on me. As he realized this his perspective changed and he gave me more freedom in managing my medications. This led to an improvement in functioning and he became happy with my progress. When I last saw him I told him about my excruciating pain spike that I have talked about in recent chapters, showing him the picture of me in agony. He told me to hang in there which I really appreciated. He himself has severe chronic spinal pain and so I think him seeing the picture was a bit like looking in the mirror with his own past experiences. During that visit he gave me many prescriptions to try out different combinations of medications in my own way when the time is right. He now agrees that maintaining my functioning is the most important thing. He doesn't like how much quetiapine I take, and neither do I, but we both believe that if taking copious amounts of quetiapine is what it takes to get me to function then it's worth it. The EDS clinic told me they know several patients with similar medication absorption issues as me but none are anywhere close to as extreme as me. We're all becoming a bit less worried because everyday it seems more than likely my body is just not absorbing most of the pills I take.
A couple of months earlier I had been working with the sleep doctor to try to lower my quetiapine dosage for the umpteenth time. As always I was able to take less pills, I was able to wake up earlier, but at the cost of my functioning. I put up with this for a month before we gave up again. I think what made a huge difference in perception is that I was utterly exhausted at that earlier appointment with the lower dosages and full of energy at the next appointment when I was allowed to take as many pills as I needed. I was speaking fast, smiling, and telling tales of all the cool stuff I'd been up to since my functioning had returned. This showed him my potential. His main goal is now to help me reach that potential rather than always pushing the usual things that won't work because of my unique situation. Progress!
While I was at camp I found it interesting to note the different ways people notice my health changes. Whenever I had a crappy sleep I would get asked by half the camp what's wrong. At home I have way more crappy sleeps than at camp because I can get away with losing functioning while working on taking less pills so the constant overdosing at camp made me have more good days than usual. Most people at the camp don't realize how much these things are apart of my life, they don't know what I'm going through when I'm locked in my room back home. This means them seeing my exhaustion is a rarity and so they assume it's a seldom problem for me. I used a bike to get everywhere at camp this summer, I didn't use my cane a single time. Biking is easy on the joints so biking without a cane is still way less painful than walking with a cane. The pain is still awful though and so when I limp people notice it. It's out of the ordinary for someone constantly on a bike to be limping and so people get confused. I am often limping to some extent on bad pain days, though the style of the limping changes day to day just like my pain does. Sharp pains that come and go are the most common causes of limping. It definitely seems that most people at camp assume I'm far healthier than I am because of the reasons mentioned above. I don't really mind that much as long as people don't make a fuss when I need to rest for a day.
No comments:
Post a Comment