First off, I am in an odd mood, which may be because we were notified Sunday night that roofers are re-roofing for this week and have been given permission to start at 7:00 am so they don’t get hot (oh, the poor dears!). Actually they start before then 6:45 and carry on after they are supposed to finish. This makes it pretty much impossible for someone with hyper-somnia (the need to sleep every six hours) like ME, to get full rest.
Lyrica and the pain meds are not working as well as at first. This could be because a) I am actually doing more like going out in my wheelchair today for 30 minutes and yesterday for 30 minutes including wheeling up a hill. Or b) Because I am not getting enough sleep. Or both. So that sucks because even on Lyrica I was in constant pain, just the sort of constant pain I used to get after a really hard core work out. But not like I was being set on fire (which is what I was like). But for example, my night pill was 40 minutes late last night, and I had to knock for it and my arms were shaking very badly from the pain, plus the joy of knowing that I had to wait 25-30 minutes for the Tramadol to kick in.
But mostly I have been asking people this question, which I ask you; “Would you stay around, going the whole ride, all the way to the end? Or would you have an exit plan?” It turns out this is not the thing to ask your careworkers. Can get you labeled for a visit from the Mental Health assessment. See, even if the dying thing is slowed or halted, the peripheral neuropathy, which I believe is causing the pain (hey, thousands of nerves dying HURT!), marches on, marches upward. Is a life paralyzed with the risk of seizures, stokes and ever increasing pain enough? Because by the time it gets to that, the chance to take my life will be lost.
I suppose this isn’t what you expected when I got a lot more clarity of mind, but the truth is yes, I have been calling the gliding program 9 times (out of office or busy) and sending them an email (un-replied), and fighting because some of my regular care givers have been taken away and the new ones are not briefed on anything (ergo, I am more exhausted when they leave than they are). But I have also been catching up on grieving and “where am I?” and a lot of the questions asked like, “Why do I spend my money on postcards and gifts instead of neurologists?” and “What is the point of it all McClung?”
I have on my table a copy of the test results and about a third of them are abnormal, marked, mostly low, some high. There they sit and do I want to find out what it means to be low in this and high in that and low in this and low in that? Not today. Tomorrow or tomorrow after tomorrow I can figure out the likelihood of how that ties together. Right now, I have roofers banging over my head, I have pain, I have a future where surviving is supposed to be enough. It isn’t, not for me. Not today. You know how much you hate your job? I want it. You know how much you hate your family reunions? I want them.
I don’t know what it is, because it ain’t PMS. It is where I am. I am still going to go out, that’s the only way I know to deal with it, make plans and gut it out. I dunno, I guess a lot of people could have handled my illness better than me. Sometimes I don’t even know why I do what I do, I just know that I have to do it.
Know why I like Hello Kitty? Because Hello Kitty simply is, Hello Kitty reminds me of me. When Hello kitty is cute, she is cute. But when Hello Kitty is a punker, she is a punker (albeit a cute punker, cuter than I), when she is doing hula, she is saying “hula with me”, she is writing cards, she is biking, she is working in a Maid Café (Don’t you know when to say “no” Hello Kitty!). And that is what I try to be. To be what I am at that time and simply be that. And write about it, and show it. I tend not toward cute, I am the OTHER side that Hello Kitty doesn’t go into that often. But maybe, because Hello Kitty has to keep trying new things (Las Vegas Showgirl?), she doesn’t know peace either. If you want answers, wrong post. If you got answers, sure, hit me, literally. Today Linda held me in bed until the sedatives wore in because I was mumbling about “gotta sell that manga to buy a shotgun.” I’m ready to be told how I screwed up, in a gold class way.
9 hours ago