Friday, March 14, 2014

5 Reason MS is Annoying!


Friends often ask, "How are you feeling?"  I most often give a simple automatic response of "good." Because do they REALLY want to know?  And even if they do how exactly do I explain HOW I'm feeling.  Most times I'm not sure because describing many symptoms of MS is difficult to put to words.  The other night while out to dinner a good friend asked me that question and it got me thinking. . . 

I'm lucky.  For a person living with MS I'm one of the healthier ones.  I haven't had any relapses since my diagnosis, I don't have mobility issues, I don't pee myself (oh yes that happens to some people), I am able to take an oral treatment (yay Gilenya), I don't have vision issues. . . and so on.

As I'm so often told, "You look SO good!"  Ya know because people with MS are suppose to look bad or something.  Oh or the other great one, "You don't look sick?!" 

And you know what?  For the most part they are RIGHT!  I think I do look pretty good and I certainly hope I don't look sick!  But MS is annoying.  As with most "invisible illnesses" there are many things going on with my body on a regular basis that you can't see.

Guess what. . . those things are a nuisance and they.are.always.there.  Annoyingly reminding me all day long that I have MS.  I deal with them because I have to and it could be worse.  I think I have a high tolerance for nuisances.  I've adjusted and things that were once so bad are just annoying now.

Here are my TOP 5 Reasons Why MS is Annoying (in no particular order):


Migraines.  I never had the honor of experiencing migraines prior to my MS diagnosis.  Coincidence?  I think not.  Migraines suck.  Mine were under control for a couple of years and then my neurologist suggested I go off my preventive migraine med.  I agreed.  For a couple of weeks I was fine and then I wasn't.  Ugh!  For the last month I've had a constant headache.  Some days are worse than others.  I am not back on the migraine med and things are getting a little better - slowly.  Migraines are no fun.  While mine are not as severe as they are usually constant for days to weeks at a time.  Imagine having a bad headache for weeks?!  Not fun and definitely VERY annoying!


VertigoThis is kind of cheating because it totally goes hand in hand with the above migraines.  I've never had vertigo before. . . until about a month ago when the migraines came back.  One morning I was bending my head down to get something and I got this weird feeling in my head, almost lost my balance and had to sit down on my kitchen floor.  It isn't dizzy but almost like a motion sickness type of feeling.  So hard to describe if you have never had it.  It is not fun.  It has continued daily since then although much better now than it was in the first two weeks.


Hypersensitivity/Pins & Needles/Burning.  You know that feeling when you think there is a stray hair that has fallen out and is somewhere on your body. . . like across the back of your arm. . . OMG I can't stand that feeling.  I constantly feel like there is a stray hair on the back of my left arm.  There NEVER is!  What the heck?!  It isn't painful but my skin just hurts if that makes any sense.  It is SO annoying.  Also I often have this weird tingling feeling that is similar to pins & needles or burning mostly in my feet.  Also annoying!


Spasticity.  You know when you lay down in bed at night and you are so exhausted and start falling asleep. . . then you twitch and wake yourself up?!  The worst right?  Well that happens to me - a lot especially at night when I'm trying to relax and fall asleep.  My legs will feel SO tight and HEAVY like cement blocks.  My muscle spasms are typically in my legs which is the same place I have pain/soreness.


Fatigue.  A boy is this annoying.  More than annoying actually.  It is exhausting! Ha!  So the thing about fatigue is that it isn't the same as feeling tired.  It is different.  It is hard to explain.  Probably the most annoying part is that it comes on very suddenly.  I can go from feeling pretty ok to feeling terrible.  Like hitting the wall times 1000!  When it happens I feel sore and find it hard to concentrate.  It can be very difficult to "work through" but sometimes I have to.  I've made several lifestyle changes to try to combat the fatigue and some seem to help sometimes.  I also take a medication that helps with it called Provigil.  Thank God for Provigil!!!

There are many more annoying things about MS but these are the 5 that are bothering me the most.  Good times I tell ya. . . good times.  But like I said it is all relative.  I've got it pretty good.  Annoying is manageable.

What annoys you about MS? 

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  1. Hugs! I never knew the things MS patients felt/dealt with! I would imagine that gets old pretty fast. I hope you continue to do as well as possible for a long time!
    (I hope this comment doesn't come off insensitive or "wrong")

  2. I can imagine how strange it is to be feeling so many symptoms, yet appear on the outside as if nothing's wrong. My SIL has a lot of trouble with her legs, which is definitely the most difficult thing for her. Once my daughter imitated the way SIL walks, and said "Why does Auntie Tabie walk like this?" It made me so sad. And it was awfully hard to explain. I do have a small idea from my UC flares, what it's like to look normal but constantly be worrying in your head about your symptoms- and in my case- where the nearest private bathroom is. Ha!

  3. Ugh, all those symptoms sound terrible and I'm sure going through them is no walk in the park. I am glad though that you only experience those and not some of the more crappy ones you talked about. I love these posts of yours because it educates me on something I really don't know a lot about - particularly on all the things they go through. You're a strong lady!

  4. And this is why I am so happy to be raising awareness for MS with you through the walk!

  5. You have an amazing attitude! I applaud you for being incredibly strong & I really believe your attitude and approach to you illness is what makes you so lucky!

  6. Suck! All of it. I'm glad you haven't had any flare ups but still, the rest of it is not easy to deal with.

    I have vertigo and it is horrible.

  7. I am so glad you haven't had relapses. You are so strong and have a great attitude about it.

  8. What annoys you about MS?

    That it bothers so many people I care about. My Mom, you, my MS Challenge Walk family - too many of you to list!

    That I spent years of my life worrying that I'd get an MS diagnosis due to weird symptoms that could have been MS but weren't enough for a diagnosis.

    And well, MS just sux, but I do believe that a cure will be found in my lifetime. For now, I celebrate small victories like oral medications available instead of shots!

  9. I'm so glad you haven't had any relapses! But seriously, none of that is fun. You deal with it all with such grace though and hardly every complain!

  10. Cheers to no relapses, and I am knocking on wood that it stays that way. I 110% understand how you feel! and I agree with everyone else, you certainly handle it all quite gracefully.

  11. I really admire you for your positivity and strength. You're so amazing!