Thursday, March 15, 2012

MS.. heat intolerance and what happened to my curls?

Ah, it seems spring is on the horizon and I can feel it in every inch of my body.  You'd think I would love the change in temperature but it affects my MS so much that it's difficult to enjoy nice weather anymore.

Yesterday, Wednesday, March 14, it was a beautiful and unheard of 79°F (26.1°C), when the average temperature for this time of year is closer to 45°F (7.2°C).  I enjoyed opening many windows in my house and driving with the windows down but soon had to turn my air conditioner on, but only on my feet since this is where the MS attacks me first.
It seems the Tysabri has given me a very strange side effect that I can't find listed on any website, but I tend to be prone to effects that few experience.  My body is quite sensitive in this way.  What have I experienced?  Well, some of you may laugh, but.. my hair is no longer curling as it used to do.  I have extremely curly hair and all of a sudden the part closest to my scalp is still very curly, the middle part is almost straight and the ends are slightly wavy.  What on earth is happening to my hair???  It got to the point that I was so infuriated that I got the scissors out and cut my hair and I am regretting that move every day since I did it, about a month and a half ago.  I miss my long hair!  I really hadn't attributed the loss of my curly hair to the infusions until I spoke with a stylist yesterday afternoon, but it made sense.  It's the only new medication I'm taking and she mentioned that this does happen to many people when they begin taking something their bodies haven't become accustomed to, so this could very well be the case for me.

While at the stylist, I chose to have a deep cleaning and deep conditioning, which seems to have helped my curls a bit, even though I take very good care of my hair.  She was also impressed with how evenly I had cut my hair, especially the back.  She kept saying I should have been a stylist!  Little did she know that I had wanted to be one, back in the day, but my legs and back stopped me from pursuing this career.  But at least now my curls look slightly better and I'm hoping they'll continue to bounce!
March 15, 2012
At the moment, we are "enjoying" 81°F (27.2°C) and I feel as if I'm dying inside my house.  My feet are swelling, they're tingling like crazy, my legs are hurting, my hands are weak (the only thing I'm able to do is type without difficulty) and I need to use the bathroom but my body can't remember how to push, so it will be a futile journey down the hall.  UGH!  I only hope that this trend will not continue as March turns into April and the temperatures get warmer.  What will the summer hold for me and others with MS?  I truly dread summer every single year as it cripples me far more than the cold could ever hope to.
Last night, my feet exploded in what I would have to call the worst pain I have felt in years.  I was sitting at my computer when the sides of my feet, near my little toes, felt as if they were being stabbed by a billion very thick needles.  The pain was very intense and lasted a good ten to fifteen minutes and as much as I tried to fight it, I couldn't help but scream as tears rolled down my face from the pain.  It was horrible.  When the stabbing finally subsided, I was left with severe tingling and extremely swollen ankles and feet.  I don't think I have ever seen my feet swollen to that extent!  Thank goodness I didn't wake up to that pain today and a few minutes ago, I decided to turn the air conditioner on since the thermostat was showing the temperature in my house had risen to 87°F (30.5°C).  I did NOT want a repeat of last night!  So far, today hasn't been too bad but it's not even 5pm so we'll see what the evening has in store for me.  Ugh!  It's the waiting and anticipating that's the worst since I know the MS is just looking for the right moment to attack me again.


  1. Sorry to hear about the negative affects of the heat. On the plus side, your hair looks great! Stay cool!

    1. Thank you for the comment on my hair! I'm finally kind of liking it again. :) As for the heat.. well, it goes with having MS so all I can say is that's life and thank goodness for air conditioning!

  2. I don't know how I stumbled upon your post here but I just wanted you to know that I know how you feel. It is 97 here today with 60+% humidity. I have crawled into my MS "cave" to spend the day in the dark. Fans are strategically placed through out the house and the AC is buzzing. I have taken a cold shower and am now going to attempt to catch up on sleep lost last night from intense cramping and pain in my legs and feet. MS is a fun trip isn't it? Hope summer isn't being too rough on you.

    Cleveland, OH

    1. Well Stacy, how ever it is that you stumbled upon my blog, I'm glad you did! Welcome to my MS madness. :)

      Luckily, I don't have much reason to leave my home too often so the heat doesn't affect me directly, yet I still feel the effects even in my central air conditioned home. The pain just doesn't let up. And I'm so sorry to read that you've been having intense cramping and pain in your feet and legs. With MS, it's always something, isn't it?! And they're never good things..... damn.