The most frustrating part of having MS (Multiple Sclerosis) is trying to explain it to other people. Being sensitive to heat. The fatigue, needing to take breaks. Cog fog, problems managing tasks, poor short term memory. Balance problems. My right side, down my right leg is numb so I fight the heaviness while walking.
But I know people see me and think I look fine. Everyone has seen YouTube videos of people with āMSā who are running marathons or who changed their diet and now ācured.ā Everyone knows someone who has it or knows someone who knows someone. And with that, thereās the horror or hero stories. If you try to explain it to them technically, their eyes will glaze over and you realize theyāve stopped processing what youāre saying. You just want to say, āhere watch this video!ā explaining the condition
After having been diagnosed with this disease two years ago, (Iāve actually had it much longer) with over 50 lesions on my brain MRI and 4 on my spine, I can say Iām technically stable. My first follow-up MRI had 3 new lesions, my last had none. But Iām getting worse.
PIRA (Progression Independent of Relapse Activity) is a relatively new concept in MS. Some neuro docs believe it exists, others donāt. I do believe it, but I donāt think my MS doc does. I mentioned to him that I felt I was getting worse and I got a bit of an eye roll followed by he didnāt see any new lesions anywhere that would cause it, and my brain volume was good. He suggested it was depression or sleep apnea (I was tested, it wasnāt). He never does an exam on me for anything MS related so how would he know if Iām getting worse?!!
I donāt believe every testimonial on YouTube, I donāt think any diet is proven to be better than any other, and thereās a lot out there āfor MSā I think whatās best, depends on the individual. If you have problems with gluten or dairy, and some people do, donāt eat it.
I mostly try to do a āhealthy heartā type diet. I do try to avoid processed foods. I might have 2% milk with cereal a couple times a week. An ice cream cone every now and then. A sandwich on whole wheat bread on occasion. I canāt say any of those things make me feel worse. I do fast before work, I work 3 12hr shifts in a hospital. I found that I feel worse if I eat before work so I donāt, I wait for lunch. Something about the energy to digest food while Iām trying to hit the ground running, slows me down and makes me sluggish. I donāt run marathons, but I do have regular exercises I do to try and stay mobile. I know if I get lazy and skip a couple days, I feel worse.
So I know diet and exercise affect how I feel, I just donāt think itās the cure some people claim it to be, at least not for me. The damage MS has done is still there, waiting beneath the surface. Waiting for me to get too hot, too tired, too sick, or too overtaxed by the day. Sometimes it surprises me. I overextend myself not even thinking Iām doing anything particularly taxing. Then I just need to sit or lay down.
Well, thatās my MS storyā¦
Is there anyone out the whoād like to share theirs?
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