Ok, we’re given a diagnosis, given meds to help with symptoms, may even be given devices to make life a little bit easier, but what do we get to help us cope with our limitations?
I have always been a doer, able to leap tall buildings in a single bound, or bring the building down, if need be. At 12 years old, I passed a kidney stone, with only one moan. Having my Father kick me and tell me to cut the sh*t out (he didn’t know the pain I was experiencing was from a stone), instilled in me a need to “toughen up”. No matter what, tough it out and deal with it. In the late 80’s, I passed another stone. The VA admitted me, I convinced them to give me a pass for a few hours, I drove 40 minutes home, cleaned the house, cooked dinner for my family, washed clothes, and drove 40 minutes back to the hospital, to pass the stone…..
I’ve had MS, apparently since the 70’s, but wasn’t dx’d til the 90’s. I went from walking to a wheelchair almost overnight. I also fought my way back to walking, and did it in HEELS! Yep, I fooled those Doctors, whom I thought were wrong, and returned to a somewhat “normal’ life.
In the past 6 months, something changed. Somehow, the rules changed, and the more I fight to return to normal, the further I seem to be slipping away. My legs aren’t working like they should, even though I’ve fought to keep walking. My arms are turning into mush, and though my new medication is keeping me from extreme fatigue, my body isn’t getting the message that I have energy.
What makes matters worse, I actually look very good. I have an awesome figure, look as though I’m in my late 30’s/early 40’s (I’m in my 50’s), but am feeling like I’m in my 70’s. Ok, there are a number of 70 year olds that can fly past me in Walmart, damn them. I hear so many seniors talking about doing this and doing that, and here I am sitting, resting. My appearance doesn't match how I feel, or what this disease is doing to me, so only those closest to me, know.
I “did a lot” today. Yea, went to Walmart, got lunch, got an ice cream. Came home and wanted to do a little planting (only a few plants). It was warm outside, but what the heck, I’ve done sooooo much more, before. Today, I blew up at my, grown, daughter, who has been helping me. We tangled into it, and I actually struck her. As we were “discussing” things, it finally came out… I resent her! I resent that I am no longer the super Mom everyone knew me to be, though I believe my grown son still thinks I am. I resent that she doesn’t do things the way I do them. I resent that I have to ask her to do the things I “should” be doing. I home-school my Grandson, and I resent that I can’t devote all the time I feel I should to him. I resent so many things that I should be able to do, or I use to be able to do. I resent the fact that I feel so damn guilty, about not being able to do things. I feel lazy, which I know I’m not, but it doesn’t take away that feeling. I feel guilty that my daughter has been given such responsibility. I feel guilty that I don’t appreciate her as much as I should, but instead have this resentment.
Conserve energy, damn I HATE hearing that, I HATE thinking about it. I HATE THE SPOON THEORY, because it’s true.
Tough it out…. How the h3ll do you tough out something that has NO rules, or changes rules at will? As a weight-lifter, I was taught to work out sore/tight muscles. Guess what? IT DOESN’T WORK FOR SPASTICITY, it just makes it worse! You have to exercise with a new rule, not too long, don’t over-do it, don’t get heated…….
As MS’ers, we live on a seesaw, except, we have no idea how high it will be one day, or how low it will go the next. Will we awaken in the morning and not be able to see, to walk, to talk, to feel anything? Will we be in pain, have energy, or want to sleep the day away?
We get diagnosed, but we also need to be given help, in coping with this crazy disease.
I have always been a doer, able to leap tall buildings in a single bound, or bring the building down, if need be. At 12 years old, I passed a kidney stone, with only one moan. Having my Father kick me and tell me to cut the sh*t out (he didn’t know the pain I was experiencing was from a stone), instilled in me a need to “toughen up”. No matter what, tough it out and deal with it. In the late 80’s, I passed another stone. The VA admitted me, I convinced them to give me a pass for a few hours, I drove 40 minutes home, cleaned the house, cooked dinner for my family, washed clothes, and drove 40 minutes back to the hospital, to pass the stone…..
I’ve had MS, apparently since the 70’s, but wasn’t dx’d til the 90’s. I went from walking to a wheelchair almost overnight. I also fought my way back to walking, and did it in HEELS! Yep, I fooled those Doctors, whom I thought were wrong, and returned to a somewhat “normal’ life.
In the past 6 months, something changed. Somehow, the rules changed, and the more I fight to return to normal, the further I seem to be slipping away. My legs aren’t working like they should, even though I’ve fought to keep walking. My arms are turning into mush, and though my new medication is keeping me from extreme fatigue, my body isn’t getting the message that I have energy.
What makes matters worse, I actually look very good. I have an awesome figure, look as though I’m in my late 30’s/early 40’s (I’m in my 50’s), but am feeling like I’m in my 70’s. Ok, there are a number of 70 year olds that can fly past me in Walmart, damn them. I hear so many seniors talking about doing this and doing that, and here I am sitting, resting. My appearance doesn't match how I feel, or what this disease is doing to me, so only those closest to me, know.
I “did a lot” today. Yea, went to Walmart, got lunch, got an ice cream. Came home and wanted to do a little planting (only a few plants). It was warm outside, but what the heck, I’ve done sooooo much more, before. Today, I blew up at my, grown, daughter, who has been helping me. We tangled into it, and I actually struck her. As we were “discussing” things, it finally came out… I resent her! I resent that I am no longer the super Mom everyone knew me to be, though I believe my grown son still thinks I am. I resent that she doesn’t do things the way I do them. I resent that I have to ask her to do the things I “should” be doing. I home-school my Grandson, and I resent that I can’t devote all the time I feel I should to him. I resent so many things that I should be able to do, or I use to be able to do. I resent the fact that I feel so damn guilty, about not being able to do things. I feel lazy, which I know I’m not, but it doesn’t take away that feeling. I feel guilty that my daughter has been given such responsibility. I feel guilty that I don’t appreciate her as much as I should, but instead have this resentment.
Conserve energy, damn I HATE hearing that, I HATE thinking about it. I HATE THE SPOON THEORY, because it’s true.
Tough it out…. How the h3ll do you tough out something that has NO rules, or changes rules at will? As a weight-lifter, I was taught to work out sore/tight muscles. Guess what? IT DOESN’T WORK FOR SPASTICITY, it just makes it worse! You have to exercise with a new rule, not too long, don’t over-do it, don’t get heated…….
As MS’ers, we live on a seesaw, except, we have no idea how high it will be one day, or how low it will go the next. Will we awaken in the morning and not be able to see, to walk, to talk, to feel anything? Will we be in pain, have energy, or want to sleep the day away?
We get diagnosed, but we also need to be given help, in coping with this crazy disease.
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