Or How I Stupidly Managed to Book Four Doctors’ Appoinments In Three Days This Week…
There was some concern over whether I might have sleep apnea that might be aggravating my fibromyalgia. I don’t sleep well. Never really have slept well. I’m a very light sleeper so I have to play a white noise app so little noises won’t continually wake me up all night. I use one with isochronic tones that’s meant to help induce sleep. I find it does help. I sleep better with than without and friends that I’ve recommended it to have said the same. Anyway, I digress… I was to do a sleep study at home. I had to pick up the equipment at the hospital Sunday night, learn how to hook it up and use it, and fill out and sign a bunch of paper work. I got no sleep with the equipment on. I was so afraid of rolling over that I would startle awake, I had a stuffy nose and couldn’t breath (which I made note of on the form), and a neighborhood dog howled all through the night. I woke up with dark circles and matching luggage under my eyes. That was appointment number one.
I’ve had a sinus infection that won’t leave. I’ve had it for weeks. Why don’t I take antibiotics? Well, those of you with autoimmune issues understand, you can’t always take antibiotics because our bodies already produce too many antibodies. It could make us worse instead of better in the long run so I have to be very careful about what I take antibiotics for. Thankfully, my doctor understands this and communicates with me. She asks whether I feel badly enough that I might need them or do I feel that I can ride it out. I love that we work together. I’ve never had a doctor like her before. She’s phenomenal. She was doctor appointment number two.
Later the same day, I went to appointment number three. My neurologist. Because my pain and my sleep had been getting worse he threw in yet another prescription into the pile. We shall see how this works. I really like my neurologist. I’m almost certain he’s an Aspy (Asperger’s Syndrome) like my son. I’ve gotten to know him over the years and now he’s more comfortable with me so he jokes around a bit and he’s wickedly clever. I appreciate humor. He’s also always been very compassionate with me and listened when no one else would. I really appreciate when people do that.
Today was my last appointment of the week. It was one of the doctors from disability to determine whether I’m fit or not. His work was psychometrics, so a lot of memorization and repeating things. I have no clue exactly what he was looking to determine so I have no idea how I did. I honestly was too tired and ill feeling to care. He even commented that I looked unwell, so maybe that was a good thing? No freaking clue.
I never really wanted to apply for disability. I cried for hours when I finally realized I had to because I simply could not work. My body would not let me. It was a very depressing realization. I like working. I felt useful and now I feel like a burden to everyone. They tell me I’m not, but it’s how I feel. I’m so used to taking care of everyone and I can’t do it anymore. I can barely take care of myself. A few doctors’ appointments completely wrecks me. I’ll be unable to function the rest of the week. This is my life now.
Sometimes a friend or family member will tell me to think positively, that things will get better, and I’ll want to scream. Because they won’t. Lately, more often, I just outright tell them that no I won’t get better so please stop telling me to get a better attitude, my attitude has nothing to do with it. I know they mean well but none of the things I have suddenly get cured. I only have one friend who totally gets it and only because she’s a spoonie like me. I don’t know if the denial is just an inability to accept what’s happening, but a lot of the time it feels like a lack of support. So I don’t talk too much about it and I’m careful about who I talk to. For my own sanity. I’m too tired emotionally to help people through my health crisis.