anyone like me?

A forum to talk about the general challenges of daily life with MS.
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cas
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Posts: 37
Joined: Wed Jan 23, 2008 3:00 pm
Location: Illinois
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anyone like me?

Post by cas »

It has been almost two decades. Drugs, no drugs and drugs again. Therapy, therapy and more therapy. Drop foot and though FES gave me hope at one time is helping just a bit. Still better than nothing. Left side of body weak. Hand strength weak. Hands always cold. Fingerless gloves everywhere. Can't cut food and find it hard to do simple tasks. Awful getting to bathroom especially at night. Left leg gets so stiff. Barely no stability. Want to sit doing everything. But such trepidation getting up from chair and toilet. Hardly can do anything independently. WAY overdue for dentist, optometrist, gynecologist, physical. Have to be wheeled in my mobility chair to anything. Missed the cell phone revolution because of the weakness in my hands. Friends disappeared when the job ends, semester ends. It is my fault too. I didn't reach out. Too embarrassed of my physical state. Alone and lonely. Husband great but how much can he take? I feel I have exhausted all my options. So weak. Hard to get in bed and out. Hard to get around house. Rollator has become a moving junk drawer. Taking a shower is a big to do. Getting dressed is a big to do. Everything is a big to do. Feel I have nothing to say because I spend so much time trying to find anything to improve the quality of my life. So hopeless. Spent small fortune on exercise equipment. My exercise stuff marvels any physical therapy place. Husband built supported treadmill and parralle bars. Just want to know if anyone feels like they've tried everything and to no avail? How do I fill my day when I can't get around and have such weak hands? Retorical question. Hard to figure out if I'm hot/cold. A/C or heat on or off. Can't fiddle because difficult to stand to turn it on or off. Open a window? But I have to stand to open. Clutch everything to get from here to there. So hard to put hair in ponytail. So hard to get food from fridge and in microwave. Hand is so cold typing this. Keep adapting things and adapting and stuff is still difficult to do. So mentally tired.
ElliotB
Family Elder
Posts: 2058
Joined: Mon Feb 03, 2014 4:08 pm

Re: anyone like me?

Post by ElliotB »

"keep adapting things and adapting"

Adapting is such a good description of daily life that few except for those walking in our boots can understand.

Sounds like your are doing well under very difficult circumstances - keep it up!
Stillhaha
Family Member
Posts: 52
Joined: Mon Mar 12, 2012 4:45 pm
Location: Palos Hills, IL

Re: anyone like me?

Post by Stillhaha »

My shower chair is worth its weight in gold. Even a plastic patio chair with arms could suffice. Dx 10/2011 PPMS & back w/ parents & ran the numbers regarding suicide after watching a Canadian TV spot on Annette Funicello. Any attempt will fail, so staying healthy by not eating crap is all I have. Facebook sickens me & old friends have a distance that won't change. 40 looms.
_________________
dx PPMS 10/2011
robbie
Family Elder
Posts: 1300
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: anyone like me?

Post by robbie »

I have experienced all that, it just keeps going and going until your left with nothing or at least nothing that makes life worth living. Been 24 years for me and i'm at that point. bed bound 51 years old and the thought of living the rest of my life like this is something I can't accept. Not a lot of options always a burden to my wife. Really tired of it all. Watched for 24 years my life from work and golf course to not able to move and having someone else wipe my ass, Just can't do it anymore.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day
robbie
Family Elder
Posts: 1300
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: anyone like me?

Post by robbie »

Its just a pretty grim look, I have a way out I'm was always thinking what if I'm so bad I can't even do it, I've spent the last 23 years adapting to every challenge ms has brought. but now my last challenge is staying out of a home. I've moved every red line as it pertains to when enough is enough. For me now I will not go into a home hence my way out, not there yet but its peace of mind knowing that won't be how the how it goes :)
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day
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