Me and multiple sclerosis

Me and multiple sclerosis

We’ve had a turbulent relationship over the last 19 years to say it mildly. There have been many one-sided fights. I’ve told my story before bug sometimes it’s worth repeating. My first MS attack (exacerbation) was sever. The entire left side of my body went numb and atrophied. I couldn’t walk, hold anything or feel on the left side. It came on fast starting in my foot on a Saturday and by the time I saw the doctor that Friday it was up to my face.  They had to rule out stroke because it was almost how it looked, except for my age, I was 26 years old. It was unlikely a stroke at that young age. The neurologist said, “does anyone in your family have MS?” I remember hearing the question, not understanding what that meant, just knowing it wasn’t good and crying. I was with my mom, at the doctor and when we were alone, through my tears, I ask “what is MS?”

That same night as I was going home, there was a car accident up the street. I don’t know the specifics of the accident, I just know that it was a bad one. One of the drivers died. I made the decision in that moment in that instant, I would never let MS get in my way. I was STILL here and I had a life to lead.

My first 12 years was pretty easy, relatively speaking.  I would have about two exacerbations a year, they were treated with steroids. I’d recover mostly, and life would go back to normal.  I’d always push my body beyond its limit. I would always walk to the point I was limping.  I would always attempt to do before I’d EVER consider asking. Hell, I’d even went to work and did IV steroids in my office so I didn’t have to take a day off. I refused to let MS get in the way.

It was somewhere after I turned 38, I noticed I fatigued a little faster. My body got run down more easily. However, I was doing a lot. I worked full-time, I was working out everyday, and I was raising a 10 year old. I refused to stop and give in to the MS, but MS had other plans.  I started hitting the secondary progressive stage. And very slowly I’d just get worse. However, I tried to refuse this. I first see issues in my cardio workouts where I couldn’t stand for the entire duration. I’d scream and yell and fall often because my legs would tire out. It took me some time to wrap my head around it, but eventually I started sitting in intervals. Then I’d have to sit for longer and longer. Now I sit for the entire time, but I still do it. I don’t work up a sweat, it probably doesn’t burn any calories and it completely fatigues me (yes even sitting) but I won’t give in. My weight lifting which is done 3 times a week was always tracked. I know what I lifted 5 years ago against what I’m lifting now. It makes me crazy because I have it all in my log books. It’s where I see my disease progression at its worst but I’ve wrapped my head around that as well. I still lift and try to keep my upper body strength as best I can.

I know my days are normally better when I haven’t worked out but I refuse to give in to MS as I always have. I know one day I won’t have a choice. Not much more I can modify about sitting in a chair. I use a walker still but that might have an end in the coming future but not giving in until I ABSOLUTELY have to. I still live in my apartment that isn’t perfectly handicap accessible but until I just can’t anymore I’m staying put.

I cry sometimes. I get depressed. I get angry and frustrated. This post alone took me 3 days to write because I couldn’t formulate my words correctly but I finally got it out. That’s been me with my multiple sclerosis. It’s there, I have it, hate it, fight it, live it, own it, challenge it and deal with it the best I could. Some days better than others. Just like that day 19 years ago, I’m still here, just with MS.

***please forgive any grammar or typos, this took me a long time to get my words out and I couldn’t do anymore ***

 

5 thoughts on “Me and multiple sclerosis

  1. I love what you said: “It’s there, I have it, hate it, fight it, live it, own it, challenge it and deal with it the best I could. Some days better than others. I’m still here, just with MS.”
    Today I’m going to a baby shower for someone at church. It took me an hour to wrap two little presents and one large present. It was so frustrating. I used to love to wrap presents to make them all pretty and gorgeous looking. Now I can barely hold the paper and tape at the same time. And I have to take lots of breaks. But I got it done and whatever it looks like that’s going to be OK for today.

  2. You said it all and quite eloquently I think. You speak from the heart and you speak the truth. I love your attitude and believe it will get you far. MS is part of you but it does not define who you are, you do. Thank you for following my blog. I hope you enjoy your visits.

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