It’s been a long time since I’ve been here.
Not for lack of trying…
I started working for an online company in February and it’s both exhausting and exhilarating having something to be responsible for.
My mental and physical health fluctuate so frequently this time of year. Of course they are really one – intertwined, woven together into a weird little ball… which is always moving, dizzy, nauseated.
Sometimes I scare myself. Not because of what I am incapable of doing, but what I am capable of doing now. The catch 22 is now that I am ‘better’ (able to be ambulatory more often, able to fake it better, medicated), some days I am running around chasing my Goddaughter and the next day I am only capable of looking at the TV and hating my plight. If I wanted to hurt myself I could. I have to make the choice every day to keep going. Even on my good days. More so on my good days. This is what the reality of a chronic illness looks like.
It’s always there. Staring at me. My monster.
It’s why those around me see me and think, shit she is better – because until they see me they don’t think of my illness. They mean well and I know this. Why is it that the sick person always has to be patient and understanding though? Why can’t our families and friends just get it. Or try to get it. Even our care teams – my Meniere’s doctor always says how great I look. He doesn’t live with my disease though. He doesn’t get dizzy when he sits down on the toilet or bends over to pick up a book. Most of you don’t get dizzy when you turn your head to check for oncoming traffic. Most of you don’t get dizzy in the shower because, HELLO it’s a shower and there is water, movement, noise, tactile stimulation, smells… most of you don’t get dizzy just by scrolling through your emails.
I was so upset by something a few days ago I was searching for how much it would cost to buy an RV and just go… hit the road. Pack up the essentials and just leave. We could be free. At least trick ourselves into feeling free for a moment.
I had a friend recently tell me I am helping people by writing these things. I was humbled these ramblings were helping someone, in some way.
I hate the saying ‘all pain is the same’ – in a way it is true though. We are all connected in some way and this weird, shared experience with pain.
2 thoughts on “Not for lack of trying…”
I’m so glad I got to read your words this morning! Laughing and crying at the same time, I have so been there 😂. I heard the phrase, Meniere’s Warrior, in a comment from another on a Facebook group for those with Meniere’s, so of course I googled it and found you. Today I’m a Meniere’s Warrior! 💪 Thank you.
Glad you found me Sue! Virtual hugs to you.