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It's a balaMSing act...

And yes, that was intentionally misspelled because that's my mood today. 😁 I am still awaiting my next appointments and hopefully tests, still undiagnosed. It's been quite a ride! For the last six months, I've been certain that my balance issues started in December 2023, when the vertigo hit and didn't leave.

But now, given time to calmly assess and think back over the last decade, I have realized that I have been having trouble with my balance for several years, and just didn't realize it. I've always been a clumsy person, tripping over air and my own feet since childhood. But rolling back through my mental filing cabinet...

I have been gripping the floor with my toes for years to stay upright. I started clipping my shoulder on walls years ago due to a sudden wobble. I have been bracing against the kitchen cabinets while working to stay in place for at least three years. All ignored signs.

It finally clicked into place this last week when I realized how much I was clenching my toes into the ground and realizing it was a familiar feeling. Like if I dug in hard enough I could sprout roots and find solid ground. I grab with a death grip any surface in front of me when I have to stand in place for anything...at the mechanic waiting for the paperwork to get my car back, waiting for the cashier at the grocery store to tell me my total, everywhere I go. And I always dismissed it as social anxiety, but finally recognize it for what it is.

A lifeline. A subconscious effort to battle the instability inside of me that was hiding in my blind spot. Even when I'm sitting solidly down, my toes are hanging on for dear life and my fingers are clenching whatever they're touching, trying to find the equilibrium they know is MiSsing.

This was actually a very hard realization, because I always considered my hard line, the real change, the tipping point, to have been this past December, with just small signs for the decade or so leading up to this point. But in truth, I've been searching for balance for years.

I would love to hear any and all of your stories. πŸ’œ

  1. HI ,
    First, let me say I love your creative new rendition of the word...very clever.
    I also appreciate you taking the time to share your story and valuable insight.
    It sounds like you are putting some of the pieces together to solve this puzzle.
    Clenched hands and toes can be a sign of tension, defensiveness or muscle spasticity . I hope others will chime in and share their own experiences. In the meantime, you may find this article interesting: https://multiplesclerosis.net/living-with-ms/morning-pain-tension-stress
    Wishing you all the best, Doreen (Team Member)

    1. I have been very cognitive of my balance lately, trying to catalog what my shortcomings are in advance of my next appointments. And yes, I would say that most of my balance issues are actually stemming from a mix of muscle spasticity and numbness. I'm really trying to break everything down to the bare bones right now so I can document and discuss with the docs. And my leg spasticity has become so severe that I can't straighten my left leg or bend my right leg while walking. And I have crazy reflex actions in my ankles and feet that just throw a curve ball all day long.

      Still on this journey and fighting hard! πŸ’œπŸ’œ

    2. ,
      I'm sorry to hear how difficult it has been for you.
      Although it's not easy, it sounds like your self awareness and documentation is not only thorough but will prove to be quite helpful in the days and weeks to come.
      I wish you all the best and you continue to strive for answers and some much-needed relief.
      ~Doreen (Team Member)

  2. Today has been a day that surpasses anything I have encountered so far. My balaMSe has been thrown from minute 1 of waking up. My coworkers are so kind, they see my wobble and they see me grab onto whatever stationary surface is close as I pause to address whatever question they have, but they just let me be and don't try to jump over to help or ask if I'm okay.

    I could barely aim my feet today and open spaces were a zigzag like I was dodging bullets.

    And then came the shower. The dreaded moment of closing my eyes to wash the shampoo out of my hair. And the inbalaMSe rose up, so very fast, and my first thought was 'so this is how it ends. I don't want to die in the shower!' But then I reined it in, found the shower door with my hand, and persevered.

    Looks like some aids are going to be a sooner than later addition to my life. But I'm grateful anyway, my life may not look like I envisioned it, but it's still mine.

    πŸ’œπŸ’œ

    1. , oh goodness! How did I miss this comment of yours??

      How has your balance been since that rough day? I hope your balance has been a little bit more reliable since then. And yes, aids may be in your future, but you might find them pretty helpful and they also may give you a sense of security and independance. At least, that's what many of our members have shared when they finally chose to (or had to) get some mobility/balance aids.

      I love your attitude and I hope you are having a good week and a good start to July.

      Best, Erin, Team Member.

    2. aw thank you Erin! I absolutely love this community, everyone is so kind and supportive. I've noticed that a few things definitely make my balance worse (like stress or exhaustion) but I'm learning how to better work with it.

      I'm still a bit off balance, have a body vertigo that won't quit and muscle spasticity in both legs that makes it worse. It's definitely on the list for my upcoming appointments to request diagnostic testing.

      I still remain, as I call it, a hopeless optimist. My glass is completely full, because air counts too! And what brings me joy, especially when I'm down, is to lift up the people around me.

      I'll continue to bob and weave my way through the world, I've got my hiking sticks in my car so I can grab one or both if I don't feel confident.😁

      Much love and respect!! πŸ’œ

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