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I wrote an article in 2009 when I’d just turned 50 years old. If it sounds negative or like I’m feeling sorry for myself I wasn’t. I never feel sorry for myself because I have MS. However, I’m realistic as all get out, I was dealt a bad hand but I’m not done yet! I have a debilitating disease and I know where it’s going. I do get down because my life hasn’t turned out quite like I’d planned or even imagined. Now, ten years has gone by and my life has truly turned out differently.
When my birthday came ten years ago I was walking gimpy but I was walking, now I can’t walk at all. Ten years ago I used a scooter when I needed it but now I ride my scooter 100% of the time. Ten years ago I was self-cathing but I wasn’t having the bowel troubles I have now. Ten years ago I could walk to the back of my van and load my scooter. Now I have a ramp inside my van and I drive my scooter inside to load it. Ten years ago I had teeth but I had them all extracted because of my MS and now I have dentures. Ten years ago I could hop in my van to go somewhere, now I need my wife’s help to go anywhere. This is just six of the ways multiple Sclerosis has changed and affected my life.
I think one of the frustrating things about MS is that no two people are alike. MS is really an individual disease. You can’t turn to someone with MS and say, “how did you handle that MS situation like you might with someone who had heart surgery.?” It’s different for everyone! Another frustrating/tiring thing is in the next paragraph.
I remember ten years ago I moved 20 miles from Casselton, ND to West Fargo, ND. I had some movers move my heavy stuff otherwise I used a 15 year old girl for packing and a strong 12 year old neighbor boy for hauling boxes to my van. I also had one of my worst exacerbations! That could have been from my move, my anxiety or ten other things but I’ll never know.
What I do know is that the whole left side of my body was numb and tingling from my head to my toes. It was like someone drew a line from the top of my head to my toes right down the middle of my body. The right side was not tingling at all, just the left. That is a very weird feeling! If you think that sounds weird how about this one. Not to get too kinky but even the left side of my scrotum was numb!
I also remember my fatigue was worse, my whole body ached and my left eye was blurred. Now, that was wild! That exacerbation hung around for two weeks and then I headed to my neurologist for some IV steroids. I took an hour of steroids three days in a row. That sped up the exacerbation so all my symptoms were gone after the three days. After the three days all the steroids did to me was leave me exhausted!