Right now I can think of 2 major paradoxes of MS. I'm sure there are more, but these are the 2 that are torturing me at the moment.
1. I'm always tired but I can never get any sleep. Sure, I sleep for about 5-6 hours a night, and sometimes I can squeeze in an hour nap, but more often I can't get any decent sleep. I probably wouldn't even get those 5-6 sub par hours of sleep at night if my night meds didn't knock me out. Even in the haze of my night drugs, I still get up 2-3 times to pee each night. I have cut down all liquids after 6 pm, but my bladder still wants me to get up to drain those 3 drops that it has produced in the 2 hours since my last bathroom visit. I wake up throughout the night and check the time to see how much sleep I've gotten since the last time I checked the clock. It's never as much as I had hoped to see. And lately, I have been getting up in the 3's instead of the 4's as I used to in the days of yore. I try and stay in bed until 4, but it is a struggle. One morning I spent 25 minutes messing with the dogs before I had to raise the white flag and get out of bed. In those 25 minutes I got the dogs so wound up by plucking hairs off their fluffy buns and trying to stick them up their noses, that it was get out of bed or risk being covered in stinky dog spit. I chose to get up with only 75% of my body covered in stinky dog spit. I didn't want the dogs to start plucking hairs off my fluffy buns and try to stick them up my nose. I can dish it out but I can't take it.
2. My MS Hug squeezes me so tight that the only way to get any relief is to wear something tighter. Across my back and chest, right where a bra strap goes, is a line of pain and tightness that is only made bearable by squeezing the sh*t out of it. I have been wearing my tightest cast iron sports bra to help ease the pain. It is so supportive that I could use a jackhammer all day and not get the slightest jiggle out of my unmentionables. Even now, I have an Ace bandage wrapped so tightly around my chest that I can't draw a deep breath, but if I don't wear it, I can't draw a deep breath from the pain and tightness from the hug. I have Sugarbowl and Princess beat on my back and rub it as hard as they can. The pure ecstasy from that makes me moan and groan like I'm in the deepest throes of passion -- not exactly something I want to do with my sister and niece. They are good sports about it and take turns so one can rest her arm while the other beats the crap out of me. Sometimes abuse feels sooooo good! Sugarbowl is the best when it comes to any MS related help I need. She has the arm support thing down just right. She understands that I need a strong arm that I grab, not grabbing my arm like my mom does. My mom grabs a hold of my arm and runs off, dragging me behind. Sugarbowl lets me take her arm and lets me set the pace. You would think that a woman who works in a nursing home would know better than to drag a gimp along, but she hasn't figured that out yet. Sugarbowl also has the beating of my back down to a science. She knows to work it across the line of pain with a combination of hard rubs and deep pounding of her fists. I was in so much pain the other day, but she had to go to work, and I wished I could afford to pay her to stay home and work me over like she was tenderizing meat. Alas, I could not afford to have her stay home so I wore a corset of Ace bandages all day, waiting for her to get back home and abuse me some more.
Like I said, these are the only 2 paradoxes that come to mind right now, only because they are the 2 that won't let me forget they exist. If you have others, please let me know. I'm always interested in others' sufferings, even though I feel like I'm running a huge risk by asking. I'm afraid that my body will decide that it needs to add those problems to my already impressive repertoire of pain and agony.
P.S. I am trying to put together another edition of Dear Blindbeard, so please send me any questions or comments you would like to have me respond to. Or any you would not like me to respond to; it's all the same to me.
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4 comments:
I am one of those people you will hate, I have MS so mild I forget I have it (at least until I move the fingers of my right hand and feel the slight numbness...) My biggest complaint is the itchiness from the Copaxone injections and the lovely red welts they leave which hang around for days. Apparently, Copaxone thinks sleeveless shirts are tacky and doesn't want you to wear them.
You are lucky to have your sister, who a) helps you and b)puts up with you (heh heh heh) I have my mom who has taken care of my dad and his MS for 20+ years (and is still taking care of him) and now gets me with mine. I also have my dad to talk to although he can't remember all that well any more what it was like in the beginning.
What are you reading right now? That is my question.
Excellent blog, very creative and dynamic, I think that helps sick people to desplay their ideas on other things and stop thinking about the pain suffering and improve health care.
I can definitely relate to the lack of sleep. Even when I am so tired that I am falling asleep in the car on the way home from work, I still only manage to sleep for five hours. At first I thought it was my schedule; I go to bed around 11p-12m and I have to get up around 5:30a to wake my kids up. However, when I try to go to bed at 9p I still wake up after five hours. I guess it is something else I can blame on MS. Oh, joy!
Good read thanks`
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