I posted this on another ms chat site several months ago. Things have only gotten worse since then. I am now on full disability. The list is way longer now. Sorry about the language ms does that to me
Not shitting my pants on a regular basis.
Being able to stand up to take a piss.
Mowing my yard.
Taking out the trash.
Walking to the mailbox to get my mail.
Driving.
Making love to my wife on the regular.
Not feeling like I am the patient and my wife is a full time live in care giver.
Skateboarding.
Being able to leave the house without assistance when I choose.
Not being so fucking weak and tired all the fucking time.
Doing simple household chores.
Doing minor repairs to house or vehicles when needed.
Being the protector for my family and myself if ever needed.
Being physically fit and strong.
Taking a freggin normal shower.
Going into the office for work.
Staying up past 8pm and not feeling like I just ran a marathon the next morning.
Daily exercise.
Not really knowing anything about MS or anybody with it.
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MSnWV
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Was DX’d 10/09. First 3 1/2 years I was on Copaxon then Avonex. Those did not help at all. Was still having relapses every 2 or 3 months from each other.
I switched to a plant based diet and instantly felt better with less fatigue. I remember having the energy to be able to mow the yard and use the staircase at work. I thought I had found my cure. I stopped taking the Avonex and went the healthy diet route. That seemed to work for a little while but unfortunately I still progressed.
I started Ocrevus last year. Next month will be my fourth infusion. Wish I could say I felt better but I don’t. The numbness and weakness has moved up from my legs and feet to now include my hands and arms.
So this list has probably increased 10 fold since the time I first wrote it.
Thank you so much for sharing your details! It sounds like your disease very active, and it makes me wonder how many Ocrveus patients have had active, very active or even aggressive baselines. I find the hands to be infuriating. I’ve been a good patient so far, but now I’m 🤬 a lot over spilled milk. Literally 😑
I can relate. It is frustrating to put it mildly. How I wish I could go back to my career! As well as the other items listed. I had someone say, as has often happened, that I was “ milking the system” - too young to be on disability! I told them if I could, in a moment, with no thought I would get off disability and work again, if only I could. People can be cruel about invisible and even visible symptoms.
I hope there is a cure, but I doubt I will see it in my lifetime. BigPharma makes too much money from MS meds. Take care, please let us know how you are doing from time to time, I am always intrigued by diets etc that others find successful. Love, Kelly
Never had anyone tell me I was milking the system. I would immediately want to punch them in the face. But since ms I have devolved into a soft, weak, invalid so that probably would not work out to good for me.
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still alive but miss you.
