I have never posted on a board, but have had rrms for over 10 yrs. Slowly the fatigue and pain and leg spasticty have taken over my body. I have a really strong faith and always a positive attitude about my day. (Yay, I walked to my own kitchen and made coffee from my Keurig, wow I am blessed type attitude.)
I have never typed or even said these words outloud, but I am not sure if I am now at a SPMS level. I shuffle when I walk most of the time, fatigue is relentless and pain in legs and spine are almost too much to bare sometimes. I get up and can function (feed dogs, put clothes on, brush teeth, make coffee) for about an hour or two. I am then back in bed feeling like someone pulled my battery out. I pretty much live with heat pad on back and one across thighs. I currently take Copaxone. I know if my neuro changes me from RRMs to something else I cannot get the rx for this med.
I see people posting they do some form of exercise a lot. I don't. I feel like I cant. Am I not pushing hard enough? I use a wrist crutch when I go out, maybe to Vons. But I am leaning on cart and shuffling by the time I get to check out. (maybe 10 min.) But I smile at people and mean it, or let them go in front of me if they are challenged also.
About 8 years ago my husband looked at me and said (no joke) "you are not going to get better, you are just going to keep getting worse and worse". We live in separate houses now. We are friendly, but I don't let him or really anyone into my 'world of ms stuff'. Really, who wants to hear it?
My mom died about a year ago, from a nasty, long suffering disease. My dad passed away from ALS. I don't want my experience to be anything close to that, but I do know God's got me. I love them so, and they were never a burden, but I admit it was exhausting.
I just turned 50 something; I am not a person who shares much to the people I know. Everyone has their own 'stuff'. So I guess that's me.
I have never typed or even said these words outloud, but I am not sure if I am now at a SPMS level. I shuffle when I walk most of the time, fatigue is relentless and pain in legs and spine are almost too much to bare sometimes. I get up and can function (feed dogs, put clothes on, brush teeth, make coffee) for about an hour or two. I am then back in bed feeling like someone pulled my battery out. I pretty much live with heat pad on back and one across thighs. I currently take Copaxone. I know if my neuro changes me from RRMs to something else I cannot get the rx for this med.
I see people posting they do some form of exercise a lot. I don't. I feel like I cant. Am I not pushing hard enough? I use a wrist crutch when I go out, maybe to Vons. But I am leaning on cart and shuffling by the time I get to check out. (maybe 10 min.) But I smile at people and mean it, or let them go in front of me if they are challenged also.
About 8 years ago my husband looked at me and said (no joke) "you are not going to get better, you are just going to keep getting worse and worse". We live in separate houses now. We are friendly, but I don't let him or really anyone into my 'world of ms stuff'. Really, who wants to hear it?
My mom died about a year ago, from a nasty, long suffering disease. My dad passed away from ALS. I don't want my experience to be anything close to that, but I do know God's got me. I love them so, and they were never a burden, but I admit it was exhausting.
I just turned 50 something; I am not a person who shares much to the people I know. Everyone has their own 'stuff'. So I guess that's me.
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