Tuesday, August 17, 2010

Like Standing Drunk Inside a Moving Subway

Okay folks, since yesterday was a more wobbly day, I'm going to try to describe my balance problems. Arrrgh I'm so frustrated and irritated! But I'm happy. Very happy.

Basically after any change in posture I tend to feel like I'm falling, or I won't even have to change my posture to feel that way. I often do start falling very quickly, but I always catch myself, either by quickly moving the foot to the side that's opposite of the direction I'm falling. Or I'll grab onto something if it's nearby. Today I did both. I found it amusing after I turned around to look something, then turned back and fell into my friend. I'm so glad she was there so I could grab onto her! We were walking on a trail loaded with wood chips, so you can imagine how likely contributed to my mishap. I was feeling wobbly and my legs felt fatigued, so it was wise that we sat down in the park for a while!

My balance also affects me when I'm standing still as I often can't seem to keep my feet flat on the ground. I tip over a bit. Then my feet rise off the ground, or floor even. It's bizarre.

I have found ways to compensate, though. A few years ago I noticed that I walk with my feet turned outward. I think a lot of that is just the way my legs are. When my knees are facing forward, my feet are facing outward. I think a lot of that is balance, though, as I can't walk stably with my feet facing forward. Hmmm. Also, when I'm standing I try to keep my feet apart to ground myself better. I also move my feet muscles around to try to grip onto the floor. Maybe my balance problems would be worse if I didn't know how to compensate for it. Compensation is empowering. It gives me the control the balance takes away.

It's so strange, though. I mean, if I'm tipping over so much and feeling unsteady, how is it that I can perform the heel-to-toe walk, a basic neurological test, so well? And how am I able to dance? I did both of these things today to see if I could. It doesn't make sense to me. Oh, the human body is so complicated! Again, endurance is my main issue, but like today, my balance issues can happen even when I've mostly been resting. Why am I sometimes completely steady, though? I don't get why this is so intermittent.

And the fatigue? Well, a number of times this week I have felt an intense need to sit down after standing or walking for short periods. It basically feels like my legs can no longer bear the weight of my body. And I get back pain and pressure that goes down my legs too. Stairs are often a drag, too. It feels like I'm carrying weights as I go up. I'm slow and unsteady. Sometimes, by the time I reach the top, my temperamental heart is rowdy. I suppose that could be contributing to the stairs issues too, but it's not severe enough or often enough to go on more medication. I guess I should make sure I haven't acquired new or worse spinal issues, but I'm pretty sure all or at least most of this is neurological. It's been seven years since I last had a scan of my spine. Or maybe my problems haven't worsened, but I'm just having more symptoms for some reason. I could speculate all day.

I'm so proud of myself for keeping active. I've been walking a lot, not afraid that it might make me feel tired or unwell. Sometimes that happens and sometimes I go for a walk or do something else even if I'm already feeling fatigued or wobbly or whatever. I'm still going to live my life! I LOVE to walk. It's one of my very favourite things to do either by myself or with a good friend.

Aside from the pleasures of the exercise, sights and music or conversation, I think walking is kind of my way of testing myself. I want to get a sense of when I will start to feel unwell or weak or whatever and what has provoked that. By walking, I hope to improve my endurance, but that hasn't seemed to work -- yet anyway. Don't get me wrong, I can stay on my feet for an hour or longer, but it's just strenuous and makes me feel sick. I just want to feel that there's something I can do to improve. I mean, I know I can't get rid of my issues, but maybe I can at least make them more manageable. It's unnerving, often feeling like I'm going to fall, having to concentrate on things like standing and walking that I shouldn't even have to think about.


  1. I think when we purposely use large muscle groups, we are more stable. It's when we are relaxed and walking, that like you said, your nervous system goes haywire. Ashley, have they ever checked you for CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)? I swear the gait issues sound just like what a friend of mine deals with and he's had CIDP for a while now.

  2. There's got to be some cause for this. I don't have a clue what, though.

    You are compensating for the problems, but it seems at some point, something has to be diagnosed and treated.

  3. Jayne - Yes, that's exactly it! I haven't been tested for that. I looked it up and it does seem a bit like me, but my diagnosis, which is undeniably Dandy Walker Syndrome, also explains what I'm going through. I've never had a spinal tap or EMG actually, but they may be worth running just to make sure nothing else is going on to try to find an explanation for a bunch of my conditions and may explain why I'm STILL sick after like 14 months. Thanks for the thought! I hope your friend is doing okay.

    Helen - I have a neurological condition called Dandy Walker Syndrome. It's basically a malformation of the cerebellum which controls balance and walking, so it completely explains my symptoms which worsened when I got sick last year, but the condition itself hasn't changed. I just have a bunch of questions about it that no doctor seems to be able to answer because it's a rare condition and not a lot is known about it. It's frustrating, but medically I'm not in danger. Thanks for your concern!

  4. Walking is one of my favorite things to do, too. I love taking my dog for a walk through the park by our house. I'm glad that you're still walking despite the problems you're having with it. Maybe you haven't seen an improvement in endurance yet, but I bet you will with time.

  5. I so admire your tenacity. I don't know how I would cope if I had the challenges you face. I know, dear girl, that whatever you lack in physical ability you make up for with your inimitable spirit.

  6. I admire your fortitude and I'm impressed that you aren't letting it get you down after so much time. Weariness has a way of making one...weary ;)

  7. Hello there,
    Just wanted to come over to "meet" you after your lovely comment on my blog yesterday. I admire you so much for blogging about these very difficult issues. Have you been diagnosed with something particular?

  8. There has to be something out there that they don't even know exists that you have. Hopefully you'll feel better soon. You have such a great attitude.

  9. Susan - I have three nice big parks near me. It's so great to walk through them! Thanks! I hope I can endure more often.

    Pauline - Yes, it is tenacity! I won't let this prevent me from living me life! Thanks so much.

    Lynda - So much admiration! Thank you. I don't know why or how, but I'm usually really happy regardless of what I'm going through.

    Karen - Thank you so much for acknowledging the courage it takes to write all this! Well writing it isn't hard for me, but I definitely feel a bit nervous after I publish what I've written. I have Dandy Walker Syndrome - basically a cerebellum malformation. The symptoms have worsened along with my Post-Viral Syndrome. I also have a heart rhythm problem (it's just naturally too fast), asthma, some fused spinal discs and allergies. Thanks for your interest!

    Denise - I'm pretty sure most of what I have been going through is due to my Dandy Walker Syndrome and Post Viral Syndrome and asthma, but I do wonder if something else is going on. I'm definitely in investigation mode again. Thanks for your sympathy!

  10. Hello, I just popped over to thank you for visiting my blog. I've been reading a few of your posts and I am struck by your strength of character as you cope with the physical manifestations of this syndrome. It's a good thing you are doing by blogging about this as it serves to educate us all.

  11. Ashley I love your attitude. You know how many there are people don't have nearly issues like you, and are negative. Keep up the good work. I wish I could recommend anything, but I really don't know much. Have you tried to do tai-chi or yoga? On the side note, it is easier to have balance when you do fast things, like dancing. Slow motion is actually harder to do. Tai-chi is like kung-fu in slow motion. Hope all is well otherwise. BTW thanks so much for visiting my blog. Appreciated. Anna :)

  12. Linda - Welcome! You are so kind! It is nice of you to think of my writing here as education. Sometimes I feel vulnerable about my blog and sharing so much of myself. Comments like yours make me see that people care and that what I do here is important, not just for myself. Thank you!

    Anna - Aw, thanks for the admiration! You are right that so many people are negative. Amazing point about slow things requiring more balance than fast things! You are so smart!

    John - Thanks for asking. I had to look that word up actually. Haha. I'm still not quite sure what it means and how to apply it to my own situation.

  13. I have one suggestion for the feet rolling out. I noticed mine starting to roll out, and that worried me because they think that is what caused my mom's tendonapathies.
    It was kind of expensive because I've never paid attention to this kind of stuff before and I had to get new shoes, but now I almost always wear shoes designed for walking, with a wide sole, so my feet can't roll out. Fortunately, there are more attractive options than just wearing tennis shoes.

    Also, and I know we've discussed this before, even though I had bad vestibular damage, my ability to do the neuro walking tests used to fluctuate a lot depending on time of day, how much I had walked that day, now active I was the day before, etc.

  14. Linda - My physiotherapist is helping me change my gait, so that I don't walk with my feet out, among the other issues I need to change. Plus, I'll be getting orthotics, so maybe they will help too.

    Yes, balance does seem to depend on the level of tiredness, previous activity and how I'm feeling. Thanks for the thoughts!