Wednesday, February 18, 2009

Just Another Day in Paradise

I'm having a "pseudo-exacerbation" hangover. Yesterday, my muscles got spastic and stayed tense for hours, then the shocks hit me incessantly sending me into more spasms. So today, I'm worn out. I woke up feeling like I had boulders pressing down on my body, like gravity had increased exponentially around me. I managed to grab my bedside cane and push myself out of bed only to discover I had been covered in cement that was beginning to harden. I feel like I'm walking through four feet of water.

And doctors tell me that this is not normal pattern for MS fatigue. They tell me that I should wake up feeling fine then hit the wall sometime later in the day. I wish they would stop reading books and actually talk to patients.

Well I managed to get up and get to the grocery (hey, I'm out of caramel cremes and other food, and staying in bed didn't feel good). Using great a coping mechanism that I learned in occupational therapy, I consulted the grocery store's directory and put the items in aisle order, noting if the item was on the left or right. At the store, I used their motorized cart and got the stuff I need to stay alive for the next few days. Definitely reduces energy consumption if I don't have to hunt for things. I got home, unloaded, and went back to bed.

Of course when people ask me how I am, I say, "I'm so good you can't stand me!" I continue to hide how I really feel, and until recently didn't even write about it on this blog. I'll recover some day and go back to being positive. But not today.


  1. What do you mean that we're not supposed wake up with that heavy, cement, quicksand fatigue? Then I guess that I'm not a very good patient myself, not following 'standard' fatigue protocol. LOL.

    Sunday, I took a short walk with Rob, just once around the block with a couple of sit and rests. Actually that was sit and wait for some feeling to return to the legs which had become 100lb boulders. It took me almost an hour after returning home to feel like moving from one room to another.

    Monday, I went to PT (remembering to mention the walk, looking for kudos, I'm sure). We started with the bike: 5min/rest/5min/rest. Then moved to the treadmill (oh boy, I'd never done both in a single session). Walked 4min at slow speed, rest, walked an additional 2min. During the last 2 minutes, I developed the "toe pick" shuffle, really trying to swing that right leg and roll heel-to-toe. Worked on strength machines, going easy on weights. Skipped any balance or gait training exercises. Came home exhausted.

    Yesterday, I was so very fatigued and spastic and sore and weak and basically a miserable wreck. And, yet, my rheumatologist had insisted that she wants me to exercise an hour/day. HA!!!!! Apparently, that's not going to happen anytime soon.

    Today, still very sore from the spasms, weak, unsteady, and would love to crawl back into bed.

    Ugh, I hear ya!!!

  2. It's okay to post how you really feel, Joan. You can be a mess. We don't mind. I will rant myself during my next attack I'm sure....

  3. Jen, Lisa,
    Thanks for your understanding. I tend to be cautious in my posts for fear that I'll get lots of "free advice" from all those clueless people who know what I should do.

    Lisa, I can't believe that the rheumo wants MORE from you. Argghh!

  4. Shauna noted on my blog that MS also stands for multiple emotions. I think it's ok to go through ups and downs. You don't have to pretend for us. I hope you do feel better soon.

  5. Joan--

    Please don't ever feel like you can't express how you are really feeling. You write beautifully and your thoughts are so appreciated.

    If everyone wrote about being great all the time the rest of us would feel like something was really wrong with us.


  6. Gee, I thought the boulders and cement trucks dumping their loads on you and elephants sitting on your chest and the electricity running up and down the spine were the classic signs.

    Let's rewrite the books :)

  7. Hello Joan,

    Hope today is a better day for you.

    Had a few months of saying I am ok everytime I was asked how I was doing.

    Eventually realised that I was only fooling myself.

    Discovered once again communication is good.
    Take care.

  8. Joan - Please do vent freely here. It is your blog and I enjoy reading. I admire how you pushed yourself to the store - but when you need caramel cremes you need them! YUM! :)

    I hope your fatigue lifts soon!

  9. I'm so sorry you're having problems. Thanks for sharing a tough time though - it really helps me to read about other people's experiences and their ideas and thoughts.

  10. Joan, dearest friend:
    I always heard from an MSer that passed away the following:"The only person that UNDERSTAND an MSer y ANOTHER MS".
    The besto doctor, specialist, scholar can not imagine when I say "..slept well but woke up at 4:00 AM very tired and here I am talking to my good friend Joan.
    In solidarity,