I just watched an MG video featuring the friends and relatives of a woman with MG. That’s when it hit me that although I know lots of people to say hi to or chit chat with, I don’t have any deep-down in-person friends any more. I miss having someone to go on adventures with, someone to help and be needed by, someone to share the good and the bad. I have lots of someones to share bits and pieces, but that’s it.
There are all sorts of personalities in this building. I know I am being a snot when I say this, but only a handful of people are reasonably intelligent. I most enjoyed my neighbor that just moved because she wasn’t a fluff brain. Some people are fantastic because of their empathy, some for their knowledge, some because they are funny. A large mass of humanity here is into smoking, drinking, drugging and vicious gossip. Those are the ones I don’t really want to know. There is also a large subset of people with mental illness. I can be polite to just about anyone at a surface level. Not so easy if I am with them for more than a few minutes at a time.
I keep thinking what would Jesus do? He would be a lot more patient than I am! I would help anyone here in times of trouble or need, but I don’t want to be involved with them any more than necessary. I don’t know how the manager can deal with people ALL the time.
I have been thinking a lot about how I got to be who I am. My mom was a good mother when I was very young. I have no idea how old I was when she went from social drinker to alcoholic. My father was always mean to me. He liked to scream at and beat me. He seemed to enjoy both that and my tears. I coped by being a loner and spending as much time as possible either outside, at my grandparent’s or involved with stuff at school or in religious organizations other that the one I grew up in.
Since I tended toward being on the spectrum, people were always a mystery to me. I spent most of my youth observing rather than talking. I read books and watched TV to try to figure out how people should act. Books were my life line. I could escape my circumstances by reading. When I was young, the dictionary and the encyclopedias were my best friends. I used to beg my mother to read the Campbell’s soup labels as I ate :-)
My family was very dysfunctional. My mother drank and my father raged. Each kid experienced family life differently and coped in their own ways. I hardly even remember my sister until I went off for college. I will never forget being soooooo touched when she sent me a penny to pay for things at college :-) The only sane way to deal with my family was to disengage with it as much as possible.
That strategy has served me well throughout life. When things get tough…..run away and go camping! The woods and pets aren’t as confusing as people. There are laws of nature. Cats and dogs are more predictable and affectionate than humans.
All of my life, sickness and disability keep sidelining me. It keeps me from doing many things I would rather be doing. Going camping usually makes me better both physically and mentally. If money were no object, I would get a big enough RV to accomodate my power chair and would have enough money to have a solar set-up, a quiet generator and money for gas, campgrounds and food. I could run my medical devices, charge the chair and maintain a comfortable temperature in the rig. I could escape from these low income apartment buildings full of crime, smoke and contention. Just imagine how well I could do with all that and IVIg every 3 or 4 weeks!
It’s rather painful to think about my ideal existence compared to my actual one. I suppose that is true to some extent with most people. If you have $$, you don’t have time. If you have time, you don’t have $$. Sigh…..
I am 59 years old. What can I change from the way it is now, to something more positive? I guess I am all I have to work with. Darn it! I have already spent a lifetime of deep thoughts and self-improvement projects. I am tired. I am never going to get there.
Real tired. Olive woke me up twice last night. Once I got up, I realized that my throat was both sore and very dry. I must have had my mouth wide open and was snoring, with the CPAP air going in my nose and out my mouth. I remember that happened last time I took valium. When I woke up for the day, my ribs barely moved. It hurt soooooo bad to breathe in and out. I was profoundly weak. The MG has gotten exponentially worse. Crap :-( Also….the FIRST thing I noticed was intense gout pain in my left big toe. As I came to consciousness, my blanket touching my toe was freaking painful. When I took a shower, I could feel every single drop of water on my toe :-o As the day has gone on, it has become more stiff and less acutely painful. I wish my rib pain would get better, too!
I am wondering if it’s more than rib pain. My entire right side and back is painful to touch and it goes deep. Feels like my ribs are being expanded with too much inside, between them. I started doing my best to feel all over on that side and there is a big lump :-o It’s near the bottom of my ribs, a bit more to the back than my side. What is it? Geeze! Now there’s a lump between my breast and my waist. When I take in a big breath, my left side expands, but my right side doesn’t. Not liking this at all. My diaphragm keeps getting the same sort of paralyzed cramps that started happening just before my last crisis :-(
As I was sinking into the depths of pain and despair, the senior missionary couple showed up at my apartment tonight. I almost always perk up for company and then crash extra hard afterward…..but so far, no crash. I hope I stay better. Prayers are good :-)
I showed them the ways I can make my voice work….open my droopy eye, pick up my head in my hands and the newest….bend my head down so my chin touches my chest. I left out tipping my head back. I just don’t understand why those things work. I can feel a change in my throat, but don’t know what that is. Kinda cool and creepy at the same time.
You know….the whole time my voice worked for the last few weeks, my eyes weren’t drooping. The droopy left eye and the broken voice showed up together in the last week. I would be happy if they up and took a hike.
Ohhhhh…..booger brains! I needed to walk to the kitchen and bathroom. It feels even more like something is trying to pry apart my ribs from the inside :-( I have been getting SOB since maybe Friday. Today I am so short of breath that I am gasping and heaving my chest just from a stroll to the bathroom and back. My right lung is most definitely barely moving :-( Not this again! I hope it’s no worse than my usual atelectasis.
One good thing is that I got my laundry back and today got to wear my new under garments again. I have GOT to get more pairs. My hernia is so huge that my old ones hurt to wear. Ahhhhhhh…..something feels good :-)