Unless others have a chronic debilitating disease, they don’t understand. Why don’t I look sick or disabled? Because my bad days are spent at home, usually in bed. On so-so days, I am great at pretending to be well. Still I try to subtly let others know that I’m not well. I tell my husband to stay with me. We are both bad at this.
I rarely have non-dizzy days anymore. If I am lucky I’ll have a good day once a week. I am a morning person, but find myself staying in bed longer so as not to over exert myself too early. I find myself in bed anytime between 7:30 and 9 most nights. I try to stay up, but my eyes will begin watering which is a sign that it’s time to hit the sack.
The nights when I have something to do, I conserve my energy during the day, so I can enjoy whatever activity I am doing. Yes, I don’t look disabled, but my body is no longer mine. It attacks me at every turn. Asthma (thankfully controlled), costochondritis, osteoarthritis, fibromyalgia and the worst of all meniere’s disease fight me everyday. Notice I didn’t capitalize them? They have too much power already.
Sometimes taking a shower uses up too much energy. Yet it’s the one thing I refuse to stop, unless a full blown vertigo attack strikes! Should I use the spoon theory? Sometimes I start with 25 spoons of energy, but other days I start with 3. If I have 25 spoons I might be feeling pretty good. But realize that people without my issues have an unlimited number of spoons.
One of my biggest pet peeves is people who say, “I had that, but I did so and so... Now I’m cured.” What is it about an incurable chronic illness that they don’t understand? If you have Ménière’s, you aren’t cured. You might be in remission, but it always comes back. All the surgeries, steroid injections, medication that may help. Eventually though MD returns when you least expect it.
I was in remission for about 6 years. I knew Meniere’s was still part of my life, because I still had tinnitus, brain fog and balance issues. Still it took me by surprise when I woke up after having spent the previous day at Universal Studios, before heading to Disneyland, with the walls waving up a down. I carried on and regretted it after getting sick after riding Space Mountain. It’s normally my favorite ride, but one that I’ll never go on again. Darkness, combined with roller coaster movements with occasional flashes of light are not good for Vestibular issues.
So, no I was not cured. Ménière’s Disease isn’t curable. The most we can hope is to control it.
It still knocks us for a loop by the unpredictability of its return. I get no warning whatsoever before an attack. Fortunately, it’s been over a year since my last full blown vertigo attack. I get mini spins frequently.
So, no you were not cured or you didn’t have Ménière’s. So don’t try to make me feel that I am not doing enough. Believe me I am doing whatever the doctor suggests. Some things I know have worked to help others, my ENT won’t even consider. So I try to live the best life I can. There is no way to make anyone understand, but compassion goes a long way. I will never doubt you are sick, so don’t doubt me when I say I am.
I hope you are spin free!
Love, Peace and Light! Rita