What is it like having MS? Part 1

This is the question I get asked very often... actually, it is THE question I get asked once people find out, so I thought I would let you know.

It's important to understand that there are the day-to-day issues of having MS and then the having MS during a relapse (I'll explain what this is later), they are very different. It is also extremely important to note that no two people with MS are the same, that is - my experience with MS is different to someone else, in addition to noting that my experiences now are very different to what they were 5 years ago.

For the first 12 odd years of my life of having MS, I would actually forget I had it... it was so non-existent in my life. I was only reminded of what I had when I had a full relapse.

A relapse is essentially when the body starts attacking itself, destroying the myelin sheath around the nerves. When the myelin sheath is attacked it causes scarring (sclerosis), which show as lesions on a MRI, this disturbs the messages being sent from the brain to the areas that is being affected. For example, if I have scarring (lesions) in the area of my spine around about where your neck meets your shoulders, I would experience weakness in my arms, if it's in a lower region of my spine it would affect my legs and my ability to walk. You can also experience lesions in the brain, this can lead to many things, blurriness or loss of sight, clumsiness, balance issues, slurred speech, vertigo and memory loss.

In those early years the only relapses I had were every 3-5 years where my arms or my legs would experience weakness. The relapse would last about 6 weeks, which at the time sucked, but in the long run, I was only reminded of my MS for 6 weeks every 3-5 years. pretty good going I think. Then after the birth of my son, I noticed that my eye sight was getting blurry and after nearly completely losing my eye sight in my left eye (I got it back thank goodness!), it was a bit of a wake up call, but with starting BG-12, the reminder was still infrequent, with my relapses only hitting every 2-3 years, but the length of the relapse went from lasting about 6 weeks to lasting 1-2 weeks - thanks to BG-12. In the last few years, I have now been reminded every day of my struggle with MS. And I say struggle, because there is a mental struggle that goes on in my head, wanting so desperately to not have that daily reminder... It is daily because I am constantly tired, and not tired in the way you get after a long day and you collapse in bed and the next morning you wake refreshed, but in a way that when I go to bed, I am so exhausted and want to sleep, but the pain in my body doesn't let me and when I finally do get to sleep (and if I am lucky to stay asleep for 7 hours) I wake up as exhausted as I felt when I first went to bed,

It's weird, I wake up during the night, so tired, but I can't sleep, whether it's pain (kind of like have arthritis or that feeling in your joints you might get when it's about to rain) or, god forbid it's an MS hug... now MS hugs.. where do I start.. Go to Part 2 for the rest of this blog entry...