...what are they like for you? More and more often I am finding myself having Carole King "I feel the earth move" kind of days. And I was doing so well.
In November 2012, I began PT for dizziness and made a lot of progress. I "graduated" to the wellness program in January 2013. I was working out with thie PT clinic's personal trainer 3 days/week and at home an additional 2-3 days/week. Since January I have lost 30 pounds and 5 clothing sizes.
I have constantly battled a fuzzy-headed feeling for more than 2 years. I struggle in stores because my brain (and subsequently my body) cannot handle all of the incoming stimulation with the movement, lights, noise, etc. Even using my scooter, I can barely make it without feeling like I'm going to just fall off the chair. Forget about walking in the store. It's as if my body can't handle all of the stimulation AND propel itself forward. I always leave shaking all over.
In the last few weeks, it's all amplified. I know we've probably all said it a time or two, but I feel like I'm losing my mind. Heat and fatigue have really exacerbated the issue. I haven't been able to work out in about 2 weeks and I am having issues even walking with my cane. I let myself get overheated during my last workout (thought it has A/C, the gym is still hot) and I was down for several days afterward.
The PA I saw a few weeks ago at the Rocky Mountain MS Center doesn't think I'm in a flare and I don't either. I think some of this is my "new normal." My local neuro (I live in WY and the RMMSC is a 5-hr drive) who referred me to the RMMSC thinks that I am moving more toward secondary progressive based upon the "lasting changes" that have occurred over the last couple years, but when I brought it up at my last appointment, the PA didn't even comment on it.
That aside really doesn't have anything to do with what I was saying, but there are times I literally feel as thought my "light are going out," so to speak, for good. I am struggling with the heat, but if I get too cold, I shake like crazy. Sometimes I start buzzing all over, then I shake like crazy even if I'm not cold. It's all very frustrating. I stopped driving a year and a half ago due to the fuzzy head and dizziness because I didn't feel safe. I was approved for SSDI this Spring.
The last two years are all so surreal. I was diagnosed 15 years ago at 20. I was totally prepared for the physical effects of MS, but they didn't talk much about or even acknowledge cognitive type stuff then. What I was not prepared for was feeling like I'm going to forget my kids' names at any minute (which I haven't
), having to fish for words, having to spend days in bed due to dizziness and balance issues, and overall feeling like my mind is shutting a door on itself.
Anyway, it's so hard to explain to people and I think all my family and friends thinks I'm crazy, too. Sleep apnea runs in my family and I'm scheduled for a sleep study. Part of me is more worried that I don't have sleep apnea because if I do have it, at least I have a chance to potentially negate some of the fuzzy headed feeling by getting more oxygen at night with a CPAP. How sad is it that I hope I am currently sleeping oxygen-deprived all night just so I don't have to face that I might have to live with this fuzzy head the rest of my life?
Sorry that this turned into a rant, and thanks if you read this far.
In November 2012, I began PT for dizziness and made a lot of progress. I "graduated" to the wellness program in January 2013. I was working out with thie PT clinic's personal trainer 3 days/week and at home an additional 2-3 days/week. Since January I have lost 30 pounds and 5 clothing sizes.
I have constantly battled a fuzzy-headed feeling for more than 2 years. I struggle in stores because my brain (and subsequently my body) cannot handle all of the incoming stimulation with the movement, lights, noise, etc. Even using my scooter, I can barely make it without feeling like I'm going to just fall off the chair. Forget about walking in the store. It's as if my body can't handle all of the stimulation AND propel itself forward. I always leave shaking all over.
In the last few weeks, it's all amplified. I know we've probably all said it a time or two, but I feel like I'm losing my mind. Heat and fatigue have really exacerbated the issue. I haven't been able to work out in about 2 weeks and I am having issues even walking with my cane. I let myself get overheated during my last workout (thought it has A/C, the gym is still hot) and I was down for several days afterward.
The PA I saw a few weeks ago at the Rocky Mountain MS Center doesn't think I'm in a flare and I don't either. I think some of this is my "new normal." My local neuro (I live in WY and the RMMSC is a 5-hr drive) who referred me to the RMMSC thinks that I am moving more toward secondary progressive based upon the "lasting changes" that have occurred over the last couple years, but when I brought it up at my last appointment, the PA didn't even comment on it.
That aside really doesn't have anything to do with what I was saying, but there are times I literally feel as thought my "light are going out," so to speak, for good. I am struggling with the heat, but if I get too cold, I shake like crazy. Sometimes I start buzzing all over, then I shake like crazy even if I'm not cold. It's all very frustrating. I stopped driving a year and a half ago due to the fuzzy head and dizziness because I didn't feel safe. I was approved for SSDI this Spring.
The last two years are all so surreal. I was diagnosed 15 years ago at 20. I was totally prepared for the physical effects of MS, but they didn't talk much about or even acknowledge cognitive type stuff then. What I was not prepared for was feeling like I'm going to forget my kids' names at any minute (which I haven't
), having to fish for words, having to spend days in bed due to dizziness and balance issues, and overall feeling like my mind is shutting a door on itself. Anyway, it's so hard to explain to people and I think all my family and friends thinks I'm crazy, too. Sleep apnea runs in my family and I'm scheduled for a sleep study. Part of me is more worried that I don't have sleep apnea because if I do have it, at least I have a chance to potentially negate some of the fuzzy headed feeling by getting more oxygen at night with a CPAP. How sad is it that I hope I am currently sleeping oxygen-deprived all night just so I don't have to face that I might have to live with this fuzzy head the rest of my life?
Sorry that this turned into a rant, and thanks if you read this far.
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