Yes! I was able to sleep 8 hours last night. I was running on empty. It’s a good thing my friend brought over bbq and cauliflower on Sunday. Otherwise I think I would have just kept not eating. I had the leftovers Monday. This morning I actually cooked breakfast 🙂 I did feel waaaaaaay better when I was not eating food. Amazing how much more energy I had! Now I can feel my sluggish and painful digestion process. Ouch. I need to catch up on a lot more sleep. I can sleep better after eating. Not fair I can not eat and have tons of energy or eat and feel like a slug.
As I go about my daily business, stuff pops into my mind. The more I think back to all that has happened to me in the last few years, the more I am able to connect the dots of cause and effect. Things make more sense in retrospect than they did at the time I was living through them…both happy and unhappy, fairly decent healthwise to almost dead. I can also understand better my WNV brain and how the neurological symptoms just kept on rolling out as the virus had more time to creep into my brain and spine and nerves.
I can also better understand why Rhett and I were a catastrophe waiting to happen. We each have plenty of varying abilities and idiosyncracies. Add to that interference from third parties, finances, trying to get health care for both of us, transportation, housing and on and on. Most everything fell on my shoulders to fix…and I was having a hard time completing tasks of daily living, let alone all that for two people with special needs. No wonder it all blew up. I need to congratulate myself that I kept it all going as long as I did, rather than feel like a failure for life happening to us.
Once I started looking at pics of people in assisted living, I realized they looked much like the people in my apartment building. They were not sitting in a corner drooling, they were doing things like going on outings and having picnics. I had imagined it to be more like a medical prison, with people in much worse shape. I am not sure if I would love or hate assisted living. I like spending plenty of time alone. I also like the ability to come out of my apartment, interact as much or as little as I feel like, then flee back to my own space. But dang! Having someone else do the cooking, cleaning and laundry sounds like heaven 🙂 But….having meals brought to me sounded good…until I tasted the food and experienced all the glitches with Meals on Wheels. I have a hard time with institutions.
Oh, my gosh! Someone just sent me this link to an article about brain damage. “Tom didn’t feel fine. He was confused, like he was in “the middle of a whirlwind,” with thoughts whizzing by that he had to grab before he could verbalize them. His sense of time was distorted. He suffered from raging headaches. His vision blurred as the day wore on, and a siren wailed in his head. He was at a constant loss for words and could not edit his thoughts, often blurting out inappropriate comments. Tom was angry, in pain, and couldn’t think clearly.”
Geeze….do I ever know and understand those symptoms! Many of us talk about our brains on the WNV support groups. Some have gone on to get neuropsychological testing. Rhett had that done. That’s how we found out he only had 17% use of his short term memory. I will never forget the day I was getting Rhett enrolled in a TBI group. The woman started asking questions about me and she said I was also eligible because of all my TIA’s, strokes and WNV. What has kept me from pushing for testing is fear. Fear that the information will be distorted or used against me. I don’t trust the neurology department at the U. They are the ones who have derailed my MG treatment by trying to say I have Munchausen’s or conversion disorder. They just threw that in the mix with no basis or proof…to keep me from getting IVIg. They didn’t even send me to a shrink. That’s because they, themselves, did not believe I had those problems. I found a psychiatrist in SLC and she thought the neuros were full of excrement. She says I have neither affliction, but do have situational depression when dealing with them 🙂
I think it would be cool to know what’s lurking in my brain. They don’t have to fix it. I mostly just want answers. Neuropsychological testing and high definition fiber tracking would help a lot. It’s used to visualize Alzheimer’s, autism and all sorts of traumatic brain injury. My genes say that is one of my weak spots. I would feel better if I had answers about what’s going on. It would be even better if there were something I could do to keep the brain cells I have.
This has been a horrible, awful bad air day 😦 Antelope Island has been on fire and about half the island has burned. They say the bison and antelope are OK because fire is what shaped the landscape to begin with and they know to run for safety. There are also other wildfires in Utah and the mountain west happening right now. And with temperatures over 100, it’s also a high ozone day. It has been hard on my lungs, head and nose. Doesn’t help that no one ever dealt with the mold here, either. I’ve been hearing that the apartments that got wet from the big flood upstairs now have black mold! 😮
I never got dressed or did anything but be calm and rest today. Well, sort of. I did a lot of writing. I had to get out my meter and write down a month of blood sugar readings for the person getting me my insulin pump. That was a lot of work 😉
We were talking about Social Security on all my support groups today. That got me curious. I ended up chatting with a representative on the phone. I asked her what date I became officially disabled according to them. She said June 1st, 1989. I think that was when I had my hearing with the administrative law judge. It took another 6 months to actually get money. I applied years before, but got denied and gave up. Back then there was no such thing as getting on an internet device and being on support groups for help and info. I’m guessing the first try was in the 70’s. I have been a wreck most of my life. Sigh….
I started wondering how long people with myasthenia gravis usually live. People in my groups have been upset about the recent deaths. I’m 60 and have had MG more than 20 years. Looks like I made it through the times I was most statistically likely to die ahead of my peers. Amazing! However, it looks like 60 might be a typical expiration date for folks with MG. Like I always say….which of my diseases will get me first? Or will I get run over by a bus or hit by a meteorite?