@isabel-39 MS is so many things and so different for everyone. My issues are more towards gait and balance and my spinal lesions are lower than yours it sounds like. I also feel that I get one good active hour a day and try to organize me day to prioritize on what is important to do with of for my daughter and family. Thankfully I am not working right now or all my “good time” would go to them going to and from meetings or even getting lunch. My daughter’s name is actually Isabelle 😉
I didn’t really understand how much “nerve pain” was impacting my life until I spent a week at Mayo really going over all my issues from both MS and a hip replacement two years ago. When scheduling the appointments the nurse asked a lot about my symptoms to make sure she had the right people lined up for me. She doesn’t have MS but had a condition that impacted her nerves and said I should ask my Dr about Gabapentin and see if that helped. A Dr friend that has Lupus (attacking her nervous system) said that Gabapentin was good but she she recommended a related slow release version called Gralise. I have moved onto that and feel it helps a lot. A friend had recommended Ambien for sleep and I tried that a bit but found regular over the counter Tylenol PM works well for me. Add that to the evening dose of Gralise and I am finally getting the 7-8 hours of sleep I need. Sleep and stress are the #1 and 2 factors that will really bring on MS symptoms.
My daughter is 17 so is able to be so independent, especially since getting her license and her own car. That is a wonderful help! But I still take her (and a group of friends) to things like the Renaissance Festival. I give them my schedule of what stages I will be going to, carefully plotting my path in a organized circular pattern, and they flitter about and check in with me occasionally. We both have a great day as she isn’t pulling me around like an anchor and I prioritize what shows/stages I go to. I don’t waste my “golden hour every day doing things I don’t enjoy or don’t benefit my family or me. My husband has a habit of starting a conversation with me when I am standing or walking by him. Ironically it is usually while he is sitting ;-> I ask him to stand while I sit or I go to a place where I can sit down and then we restart the conversation. I simply can’t stand around. I also find that I can walk full out for a good time but can’t walk on uneven ground (or pavement) and can’t take small mincing steps like waiting in a grocery line.
I use a walking stick if the surface is challenging and had an AFO to help with foot drop since spring. I started having more issues through June and found that is no longer enough or helpful as it was before. I have been trying FES devices and found that the L300 Go from Bioness was better for me than the Walkaide. I have the paperwork in the pipeline to see if I can get insurance coverage for it. Crazy that they will cover over $80k in cost for Ocrevus and then have issues with $5k so I can walk! that is insurance logic I guess! At one point I had fingers that would have an occasional burning/pinched nerve sensation and the massage person I see said my first rib wasn’t staying in position and was pinching a nerve. She told me to see a Chiro and between his adjustments and picking up belly dancing (there is a lot of core training, shoulder and neck work in that!) my neck and shoulder issues were resolved. That was like 10 years ago 😉 now my gait issues wouldn’t really allow for belly dance. Maybe I can play with that if I have further improvements with Ocrevus.