Sunday, March 20, 2016
A Harsh Reality of Lipedema
I went to an annual community seminar yesterday, it is a seminar that a local Christian counseling center puts on and they do great workshops on living better, counseling and other issues. They offer scholarships to go for people like me so it is free. I plan to post some information here, that I learned at this conference, but I had to sit up for several hours, and well my body is worrying me. I don't regret going, not at all! However, the pain I endured was so extreme. The Lipo-lymphedema aspect of my illness is just so out of control.
This means the body swells as a WHOLE.
My legs were compressed and Flexitouch took off much of the leg and stomach fluids at night, but it's like just from sitting up my body wants to break down and put me in immense pain. I am far more free of infections then I used to be, and it doesn't grow bigger and bigger like it once did, but it is a constant battle.
Even my arms and hands bloat and face and the rest of me grows bigger. Well remember I wrote that physical therapists and nurses saw these constant changes which helped get me to the diagnosis in the first place. I am in bed today, I did get up to do my insulin, clean out my lung nebulizer and use it, shower, and put dinner in the crock-pot, and make sandwiches for lunch, and wash some mini-peppers to eat with the sandwiches but I have to make up just for sitting up for more then several hours yesterday and going to this conference. Some walking in a very large church was required too of me down various halls. [Just 6 years ago going to this conference would have been impossible, my walking stamina would have been way too low.] People were good to me for my disabilities and the people moved around certain chairs and benches I sat on more comfortably.
There is something I am realizing about myself.
I have spent years in physical pain, and I have had to learn to suck it up and hide the physical pain so long. I wonder what it has done to my personality. Sometimes I am hoping even as I am enjoying conversations with nice people, that I am doing a good enough job hiding it, but I think they can tell. That's what worries me.
Sometimes when one has spent years and years in physical pain, you go on an autopilot of sorts. Autopilot for me, means I am tuning my body out and there are a lot of days I have to live this way where there is no choice. When I can tell the plane is about to crash and the pilot check out, I have to force myself into bed for the whole day. Sometimes this seems to be happening lately more then I want. It worries me. I was so exhausted I actually slept 12 hours straight without waking up. Those kind of sleep hours are increasing too.
This can be a very hard disease to have in a culture that would judge me for being "lazy" forced to live this way from a rare and hardly understood disease.