Yes, Multiple Sclerosis Is Real
Sometimes it feels like my head is stuck in a shaken snow globe that’s waiting for the flakes to settle…only the flakes never do. That’s the dizziness and vertigo I’m experiencing right now.
Most days it seems I am fighting a never-ending battle. There are times I wake up thinking all is good and that the spinning is gone, but as soon as I get up and start going about my day…boom, it’s back. It never seems to go away for long. I think it just takes periodic bathroom breaks or trips to the refrigerator for a snack. I’ve tried to talk it into moving to Kalamazoo, but for now it has no plans on leaving.
Living with the vertigo, or any MS symptom for that matter, is not an easy thing to deal with day in and day out. It can cause you to feel like an outcast and all alone. For many, that’s the very reason they give up and withdraw from life.
I was tested for BPPV (benign paroxysmal positional vertigo). It’s when small crystals of calcium carbonate within one of the organs of the inner ear becomes detached and moves into another part of the inner ear causing dizziness. I didn’t have that. So it’s more of a mystery for now.
The pressure of trying to explain yourself all the time can be tiring, especially when those explanations are met with blank stares or unsympathetic responses. No one wants to be told to suck it up every time they are having a difficult moment. No one wants to feel like they are losing it because the people around them just don’t get it or care to want to understand.
Know that you are not delirious. What you are experiencing is real, and although it can be difficult to make it through your day, or even to get through the next 5 minutes, you have to keep going. I believe in you. Take it one step at a time… one breath at a time if needed.
I’m going through 3 days of Solu-Medro infusions to help restore some of the energy I have lost. I have no idea where it went but it seemed to take a vacation without me. I can’t stand up without my legs giving way within seconds. Trying to dry myself off after I shower is a near impossibility. I more drip dry than towel dry. So I just wrap myself in a robe to dry off.
I don’t have enough energy to squeeze a bottle of mustard for a sandwich. Driving make me dizzier than dizzy. All the movements around me affects my vertigo which goes haywire with just a hint of movement. So much craziness… and I hope the infusions will help restore some of my energy and give me my life back. For know it’s just a waiting game filled with lots and lots of hope.
Join me and choose to love yourself enough to hang on. Today is a new day filled with new possibilities. Remember, you made it through yesterday, you made it through some other really tough times too…you will get through today as well!
1. Simplify your life.
Oh, my dear. How I wish I could be helpful to you. You encourage me so much with your posts. You remain in my prayers that God supplies all you need.
Thank you so much Erin. I can use all the prayers you’ve got. Hugs. xoxo
Hi there,
Thank you for this. I was diagnosed later in life (I am in my 50s –ew, I do not like that part of the sentence) and have been a bit of an enigma to my neurologist. I was diagnosed with BPPV at 5 (allllllll the way back in the early 70s) and have had all kinds of issues that if someone had connected the dots, would have led to an MS diagnosis earlier. The reason I thanked you for sharing this is–my challenges are not visible, but they are very real. I so understand what you are going through physically, and emotionally, and I send my hugs and good vibes. It is tough to handle the blank stares. I am not sure if it is denial on the part of some of my family members or some sort of apathy because they think I am overdramatic because I do not need a walker or wheelchair? Bless you for hanging in there every day. Bless you for getting up after drip-drying. Bless you for sharing your hope with others. Take good care. –H
Wow…Sadly I understand that vertigo-dizziness
Seems like was a medication causing although had taken Gabapentin for years l! But for now seems ok
Maybe solo-medwrol causing?
They tried that one years ago for me But I had serious hallucinations!!
I am praying for you as I write, , , ,
As always your post inspires me as I struggle with my own PPMS invisible symptoms and worsening symptoms. The shower is such an energy thief!! But crouching for any reason is it’s own special torture too…
Thanks for reminding me that I’m not alone – in that MSers understand the struggle. And we can inspire each other to just carry on and look for the bright side 🌠🤗
Big gentle hugs 🫂. Love the bathrobe towel idea!! 🧡🧡🧡