by tinglyfeeling on April 20, 2011

As a rule, I crave stability. In my job, in my home, in the people I surround myself with. I like a sure thing. Unpredictability, flakiness and variables outside of my control freak me out. Too much open space or free time, which can sound awesome at times, can stress me out. I prefer structure. A schedule of activities. Lists. Things I can plan on. And I don’t like it when people change my plans unexpectedly. I can adapt to change, but I appreciate a heads-up–and really would like to be involved in the decision in the first place.

Multiple Sclerosis obviously throws a huge wrench in my plans. It goes without saying, really, but you can’t plan for MS.

So, even though I know all this, why do I let it bother me so much when my symptoms suddenly act up, like they have this week? I was doing fine. Or as fine as I’m used to, with the ever-present numbness in my right leg and a grab bag of other random, but pretty mild, symptoms. But yesterday, I noticed while taking a shower (shower water is a really great way to discover What’s New in Numbness), that my upper right thigh was also numb. Okay. Whatever. And then throughout the day, I began to notice how numb the back of my left leg was, as well as my left shin. Hold on. That’s not part of the deal. I’m willing to accept Right Leg = Numb, but my left leg is supposed to be the steady one. I can’t have them both acting up on me. It makes walking and standing especially hard.

I wobbled through the day, clinging to and leaning on walls and countertops, staying seated during meetings and generally taking it slow. I hoped (and am still hoping) that this increase in numbness was a side-effect of the start of my Lady Time, but I’m still bothered by it because it’s not typical for my symptoms to get *this* bad in conjunction with my period (TMI? Deal with it.).

Anyway, I should know better than to worry about it. This is what happens with MS. Things change unexpectedly. There doesn’t have to be an explanation or warning signs. It just does what it does. I have no control. I know this to be true.

But three years since my diagnosis, I still resent how flaky this disease can be, like an unwelcome and inconsiderate house guest that invites friends over who drink all your beer, make a mess and stay too long. If it can’t tell me when extra symptoms are going to show up, I wish it could at least tell me how long they plan to stay. Because I really don’t want to feel like this every day forever.

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  • Anonymous

    Yep. Although with me, I can sort of accept the flakiness of the weird new symptoms that come and go — it’s my extended family who can’t seem to wrap their heads around it. “WHAT? You’ve got WHAT now? I thought that new medication fixed all that! blah blah blah …” I have to explain over and over that it never ends with this disease and the sooner they stop making a huge deal over every little twitch and cramp I get, the better off *I* will be …
    – saymoarnao (Dorothy)

  • tinglyfeeling

    That sounds really frustrating–it seems like it should be pretty basic knowledge at this point that this disease is a) unpredictable, b) different for everyone and c) has no cure. Maybe you can hand out wallet-sized cards that sum that up? ;-)

    I had a cousin who recently died from MS-related complications (since we can’t die from it directly, right?), so one side of my family is very aware of MS–but just from the perspective of his experience. So I get “Honey, how are you feeling? You look so good! [cheek squeeze]” and lots of furrowed brows expressing concern. Because to them, it’s a lot worse. Which scares me because I don’t like to think about how bad it can get.

    So the flaky on-again/off-again symptoms, while “normal,” really bother me when they come on so suddenly and I can’t point to any one reason. Am I having a relapse? Are these new sensations going to stick around? Ack!

    I feel better today, and hope I’ll feel even better tomorrow. Only time will tell, right?

    Thanks for reading and for your comment. xo

    Take care,

  • Max

    I feel like I could’ve written this myself.

  • Aaras Von Monovski

    You are really brave and reading about your experiences makes me feel better about the as yet undiagnosed MS I have (I have a brain mri with contrast next weekend) but have had MS symptoms for years and didn’t speak up until it got bad. Anyway, enough about me, your struggles and you talking about those and your good and your bad is something I hope you keep doing. I will keep reading and I hope that your MS goes into relapse someday. You are funny and I hope you always keep that spunky-ness.

  • tinglyfeeling

    Aaras – Thank you for your kind comment! I’ve had this blog for a couple of years (or maybe 3? ack) and I’ve been kind of a slacker about updating it on a regular basis. I’m glad to hear that someone gets something valuable out of my ramblings. That is incredibly encouraging. I’ll do my best to keep the posts coming, and please do talk about yourself in the comments! I don’t want this blog to be all about me.

    I hope you get good news after your MRI and that your symptoms are due to something minor and treatable. Feel free to share the outcome here if you’re comfortable with that.

    Best of luck…
    tingly feeling

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