Do any of you struggle with frustration with MS, or anxiety, fears or depression with MS? One of my anxieties is getting back to driving my car again locally to stores that have an electric scooter. I have driven a few times lately about a few miles from the house, but I don’t want to do it everyday. Also, not all stores have electric scooters as you may know, only grocery stores, big warehouse stores like: Costco, Home Depot, Lowe’s so this is frustrating.
I have a mobility scooter I use at home off and on during the day when the fatigue strikes or my legs fizzle out. I face this re-occurring driving fear always after another relapse of being extremely weak for a while. I had a mild relapse two months ago. The worst relapse was in May, which left me with a permanent disabilty-one new lesion on cervical spine, less leg strength and I run out of energy much quicker, plus more nerve pain. So I need to lie down a lot everyday now which I get sick of too. Mentally, I’m fatigued too so I don’t want to read, or do anything that uses my brain 🧠 so I lie down and stare at the ceiling. Sometimes I want my life back the way it was over 5 years ago. I know this thought doesn’t help me now, but it comes especially when I’m sad, frustrated, mad, whatever. I learned from my counselor to focus on today and what I can do. I’ve been doing that more which helps a lot, and it’s a daily practice that’s not easy-believe me.
I started a new medicine called Tecfidera almost 2 weeks ago. It’s going very well so far and has reduced my pain in half unexpectedly and has given me more stamina up to late morning time. I’m not on the full maintenance dose yet. So, I look forward to what’s to come, but mainly that it cuts down on frequent relapses. A new disability feels like a loss or grief and it’s a huge adjustment. My mind wants to do so many things everyday, but my body can’t follow all that. Everything I do now is limited and much harder like taking a shower (I use a shower bench)-it’s the act of washing hair, body, etc. is exhausting and afterwards, I’m ready to lie down. Making myself a meal is tiring, especially in the scooter that takes about 15 scoots back & forth from fridge to counter to sink to get things I need to make the sandwich or put stuff away...Ugh!
Thank God my hubby makes many of my meals right now and has been cooking dinner every night for the past 6 months-What a saint! I used to enjoy cooking and baking, but it takes too much energy out of me now.
Tonight my hubby, son and I are invited to our neighbor’s Christmas party. I was excited other day when I got the invite, but now in later afternoon I have the bad fatigue, and less physical strength that stays rest of day so I have to lie down. And now I don’t care to go. Guess I feel more nervous going to parties now or an event because I have to consider how soon I can sit down, which is usually in 10 minutes, lol! If you can relate to this, I’d love to hear from you.
It feels isolating at times to deal with MS. Especially adjusting to new physical disabilities or whatever disabilty shows up.
It’s difficult for family and friends to fully understand what we all go through daily. I know MS symptoms are different for each person. Some people (small %) don’t struggle with hardly any symptoms or zero, which is a mild case. Then the majority of us struggle with some intense daily symptoms or have it severe.
Thanks for listening to me today. It helps greatly for me to get out this mixed bag of emotions that swirl around in my head and I feel comfortable to do it here.