The Wobbles

The Logical Heart Knows Best

I feel so relaxed, my hair still damp from a luxurious hot bath book reading session. All snuggly in my pj’s, the wind outside making ghosty howling sounds heightening my appreciation of feeling toasty and protected indoors.

Earlier today after work I was hobbling, sweaty, my back aching, exhausted, my wobbles acting up (MdDS). While I’m working my symptoms flare up as the day progresses. It’s like my body becomes a gyroscope and I sway, wobble, and have to fight to keep from bumping into things, to stay balanced, to not drop and spill things. And I get easily fatigued and have difficulties concentrating, brain fog at times. Sometimes it also feels like I’m walking on a trampoline, it’s a really strange set of symptoms and sensations that worsen unpredictably and I’ve grown accustomed to them, ignore it as much as possible and go about my business as best I can.

I tried researching and reading, joining support groups, taking all kinds of supplements, nothing has helped. I’ve been meditating and shifting my thoughts to maintain more peace, gratitude and acceptance. I used to get really frustrated and felt so powerless because nothing I tried worked and I felt guilty and blamed myself. The more I tried to figure out how to get better, it zapped my energy even more and left me feeling more hopeless and overall worse.

Now I don’t bother with the support groups or with research about what could possibly help. There is nothing so far that cures MdDS and they don’t even know exactly what causes the disorder because it’s neurological and complex. There are medicines I could try to see if they would help, but there’s no guarantee, plus some are addictive and some treatments may even worsen symptoms.

Sometimes I still feel guilty, or like I’m failing and get frustrated because I believe that if I could get my mind to focus properly, if I could practice the correct thoughts and emotions, plus do better with my physical healthy practices, then I could be healed. I know this isn’t helpful and is counterproductive so thankfully I am feeling less guilty as time goes by.

It’s a powerless feeling, having an invisible illness that is difficult to treat. So far the best way for me to cope has been to surrender and accept that some things I will not be able to control and to feel bad about it is understandable, but eventually feeling bad on top of the symptoms of the malady is a double whammy. So I’ve learned to let go and just roll with it, noticing, ah yeah I’m wobbly, but I can still function, stay present and I’ve made it so far, I can go some more. In a few hours after some rest the symptoms will ease up a bit and if not, I can lay around and watch Twin Peaks 🙂

I focus on what I can do and make the best of it while still hoping that one day I won’t have the wobbles anymore 🙂

I hope this helps validate others who feel guilty about being ill. It’s hard and you’re not alone 🙂 Love and hugs 😀 ?

Michelle Miyagi
Hi! I was an RN, BSN in mental/behavioral health for 27 years. Now I'm helping empower caring people like me to prioritize themselves by maintaining healthier boundaries for more freedom, peace, and joy. I am also active in Long Covid advocacy.

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