Tuesday, July 24, 2018

I Wanna Live While I’m Alive

To paraphrase a lyric from Bob Jovi, I wanna live while I’m alive. Despite the fact I have a bunch of chronic diseases, I choose to enjoy the good days and push through the so-so days and sometimes even the harder days when I’m not aware of what’s happening.

My husband is usually there to catch me if I stumble. Thankfully, I haven’t fallen in public. I am usually pretty good at pretending to be okay. 

Here I am at Disneyland when the Ménière’s decided to make its grand comeback after around 6 years of remission. My vision was skewed as everything was waving up and down. I got sick after going on Space Mountain. I was so good at faking it that a friend who was with us didn’t know. 

I thought everyone could tell. I was off balance and very tired. In fact I sat out many of the rides. Ralph said I downplayed it. I don’t know if this is good or bad. On the one hand I don’t want people to pity me, on the other I want them to believe me when I say I am not well. 

Then there is part of me that doesn’t care and the other part of me that wants to educate others about invisible illnesses. So I do talk about it. And there are people in my life who do not believe me. They think I want attention. 

I’d much rather not feel foggy most days, drunk without the benefit of drinking... dizzy or having vertigo... fatigued because my brain is working overtime to keep me upright. Oh and the worst symptom for me is the room spinning vertigo. That I cannot even fake being well, but since mine happens at night, only people living with me will ever see the results. 

So when people tell me I’m faking or talk behind my back or make snide comments, my hackles go up. Keep it up after I explain and you will not ever be my friend. I know this is harsh, but friends and family should be supportive.

Enough with the rant and back to my original thought... I am going to keep enjoying life. I will camp, cruise, hike, go out with my love, enjoy movies with family and friends and all the other things I can think of. I may crash later, but the memories I am making are worth it. 

I will not take shame in using devices to keep me upright. Right now I have a cane. I may have to resort to a walker if the vertigo continues to affect my balance so that I cannot fake it. Yes, I know this is becoming as bad as the room spinning vertigo, but I will persevere.

One thing I do miss is being able to take off by myself in my car. I wouldn’t want to endanger anyone if I drive when dizzy or having vertigo. I don’t even drive if I have brain fog, because I cannot pay attention to what I am supposed to be doing. 

Today is a girls day. My sister-in-law and I are going to see the new Mama Mia movie. I am so looking forward to it, even though the vertigo has found me. I will go prepared with my cane, blue light filtering glasses and earplugs. Though I hope I don’t need them. 

I will keep enjoying life... no matter what comes my way! I am prepared for the worse, but hopeful. Where there’s a will, there’s a way!

I hope you are spin free!

Love, Peace and Light! Rita

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