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Old 10-18-2020, 01:27 AM #1
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There seems to be the conundrum, how do you partake in the activities that you enjoy doing without making your condition worse, but not give it up to the point you aren't enjoying life and are half of a shell of your prior self?
I don't know if this would work with other disorders but for me, every time I start an activity, I try to make sure I won't mind too much if I have to stop and rest often or maybe even abandon the project entirely until the next day--or the next, depending on how I'm doing.

This goes for ironing, vacuuming, or any project like cleaning the refrigerator or cabinets. But it also goes for activities that are recreational, like gardening. My "gardening" involves a few potted plants on a patio that are kept high enough for me to get at them, and a few more potted plants indoors, but just repotting one or two of them can be tiring. I'd need a couple of breaks before finishing.
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MS diagnosed 1980. Type 2 diabetes, osteoarthritis, osteopenia.
Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: Glatopa (generic Copaxone), 40mg 3 times/week, 12/16/20 - 3/16/24
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Diamond Tiger<3 (10-18-2020)
Old 10-18-2020, 03:42 AM #2
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Originally Posted by agate View Post
I don't know if this would work with other disorders but for me, every time I start an activity, I try to make sure I won't mind too much if I have to stop and rest often or maybe even abandon the project entirely until the next day--or the next, depending on how I'm doing.

This goes for ironing, vacuuming, or any project like cleaning the refrigerator or cabinets. But it also goes for activities that are recreational, like gardening. My "gardening" involves a few potted plants on a patio that are kept high enough for me to get at them, and a few more potted plants indoors, but just repotting one or two of them can be tiring. I'd need a couple of breaks before finishing.

I do believe your advice and suggestions can apply to most things in general.

I will give you a example:
Because of Covid, I have ordered my groceries online and have them delivered to my house just yesterday. It was $700 worth of groceries but should last me a month or longer.
The delivery guy unloaded his trunk and sat everything in my car garage to make it easier for me to grab and is closest to my kitchen since the entry door into my house from my garage goes directly into my kitchen. I knew I had a bunch of refrigerated items that had to be put away immediately. I believe I mentioned I have a loved one who I have been taking care of that just had back fusion surgery a few months ago and is still gaving difficulty moving around with the use of a cane to help him.
He tried to help me carry the groceries inside, but I knew he wouldn't be able to do much and thats ok. I worried about the few trips he had helped me, he would lose his balance and fall, or hurt himself again. My natural reaction was to walk and move at lightning speed to get the groceries inside as quickly as I could to prevent there being a accident and he may fall again. I was able to help lift him up off the ground a few months ago right after he fell, but I'm not sure I would be able to do it again right now. I kept telling him to just sit down I had it, but he insisted on helping me. There are many instances of this that goes on in my every day life. The faster I am on my feet, the better the chances there wont be another accident with him.
As for myself, I do know there is a good chance I could lose my balance with my leg going numb suddenly, or I have a sharp shooting pain strike me without warning and I end up being the one who falls instead. I guess if anyone were to fall, I would rather it be ne than him.
What is scary, this almost happened to me a few weeks ago when I had taken the garbage out and was rolling the trash can out to the street. I felt fine until right as I got halfway to the syreet with the trash can, the pain and numbness hit me out of nowhere. I thought I wasn't going to make it back into my house safely without falling. Thank the good Lord I had barely made it through the door when my leg had given out on me and the sharp pain intensified for me to collapse into a chair just in time. I am struggling with that kind of balance as well with house chores.
I even had a problem one day anout a month ago just trying to take a shower. I stood up and walled towards my bathroom to turn the water on. Before I could make it, my feet had rhat sharp stabbing pain with the tingling numbness sensation. I could not walk any further or put any of my body weight on that foot. That was scary too. It is frustrating to feel fine one minute and to be moving around pretty well to suddenly go to that extreme of not being ok. There cones into play of loved ones not being understanding of what is wrong. Over the years even before the Tarlov Cysts dx, I often ran into this problem with them. Whether it was just being in so much pain even with medication not being able to do many things. Or, being accused of being a addict to pain medications even though the prescriptions were all prescribed by one of my physicians and I was taking it as directed. I'm still trying to work around these things the best I can right now.

Best wishes,

Diamond Tiger<3
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agate (10-18-2020)
Old 10-18-2020, 06:38 PM #3
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Yes, it's the unpredictability and the frequency of these episodes that people often don't understand. I never know just when I'll give out or what part or parts of me will give out.
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Repeal the law of gravity!

MS diagnosed 1980. Type 2 diabetes, osteoarthritis, osteopenia.
Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: Glatopa (generic Copaxone), 40mg 3 times/week, 12/16/20 - 3/16/24
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