Chronic Illness: a Conversation with Loved Ones
*I wrote this almost a year ago. Since then I have had an additional diagnosis on top of this one of a similar vain. Actually most are of a similar vain. “It’s all in my head” hah. Edited for updated information*
I have Meniere’s Disease. I suffer, I live and sometimes I just rest with Meniere’s Disease. But it’s there always and forever. For those that don’t know, and I know it’s most. Meniere’s Disease is a chronic, invisible, disease that has no cure. It brings vertigo, tinnitus, hearing loss, ear pain, and pressure into my life. Amongst many other symptoms. Most are hard to explain when I sometimes have trouble understanding them myself. I generally try to yell “This is Sparta!” at my day at least once. It helps with the constant battle that goes on without my control or say.
What You Need to Know: The Specifics
The Mayo clinic describes my life so much more simply than it feels. “Meniere’s disease is a disorder of the inner ear that can lead to dizzy spells (vertigo) and hearing loss. In most cases, Meniere’s disease affects only one ear.” But here’s the truth, this disease like many chronic illnesses affects each and every recipient differently.
Most days I can’t walk. A lot of the days I can’t walk on my own. I consider those pretty good days. My most visible symptom is vertigo. Not, just got off the roller coaster going to throw up my lunch dizzy. More like my life is never getting off the Tea Cups and they are going backward. But the world is what is actually spinning and it’s around me–and I can’t get it to stop.
Other parts of my symptoms include hearing loss and ear pain. Brain fog. You know this feeling when a word is just on the tip of your tongue, but you can’t quite grasp it. I can feel that way, all day, for anything and everything. If you ever had to explain the word “stairs”, while looking at them. You feel me. Or ear fullness/pressure. Going up in an airplane that wonderful pain in your ears that come with the pop. Just no pop, most of the time, and on the ground whenever it wants. Did I mention the tinnitus? The roaring in my ears? And that’s just the tip of the iceberg.
One day I might need hearing aids. One day I might not have any hearing in that ear at all. One day I need a cane and one day I don’t. One day I could need a walker.
It’s a Vestibular Disorder of the inner ear. There is fluid in my affected ear. For me, it’s my left ear for now. At the moment, it is only lateral. Meaning it only affects one ear. However, it can become, bi-lateral and affect both ears.
It’s a long term disease. Long term. Rest of my life long term. Guys, I am never getting better. I am never going to “feel better.” Whatever that even means anymore. I am never going to get over it. This isn’t the flu. I won’t just wake up one day and be better. Better is just not something that is me. And that is, okay. I am forever sick.
You should hug your local chronic illness sufferer. Even though at the end of the day, we do not want your pity. Maybe you should ask about the hug thing too, you know? Germs and all. I may not have the flu, but I can still catch it. We just want acceptance and understanding. You don’t have to get a PhD. on the topic, just believe us.
Just believe that when we say it’s a bad day. That even though I am walking with my cane today. I am fine, it just helps sometimes. That I understand my limitations. That I am not giving up on the things I wanted in life. I am choosing to live a life where I spend most days okay. At a functioning normal. Not stuck in bed because you thought it would be a good idea for me to go to that concert or take on another activity. I learned the hard way when I didn’t want to change. When I liked the life I already had. When I thought I was giving it all up, which wasn’t the case.
Just Listen the first time
We shouldn’t have to have a discussion more than once. Please understand, that I understand that you don’t see when my S.O. has to carry me up the stairs just so I can pee. Or that he has to bathe me from time to time. I know you don’t see me after the weekend we spent at New York Comic-Con. When I am stuck in bed. In the dark, under the covers, probably annoyed at the dog who wants to torture the cat or vice versa and now won’t go upstairs without me. And I am unable to walk or even turn over.
I don’t mean to have to cancel plans. To be unavailable when you need me. I would love to go on vacation with everyone when they wanted. To spend the weekend in some place with flashing lights and music. Where we drink until we forget where our room is. But I have to think about the next day and the day after. About being able to walk. You don’t and I understand that. So why is it so hard for you to understand that for me?
Why can’t we all understand that my life has changed differently than it has changed for you? That I dreamed of traveling the world and being Lara Croft, but I get to cry about how that is never going to happen. Not you. Could you imagine me having an attack in a foreign country? I can hah.
That only I know how I feel right now, that my illness can’t handle the stress of school or work or a three-hour party at Dave n Busters for my niece’s eighth birthday. Sometimes I did them anyway. Knowing I wouldn’t feel well after or during because it was for someone and I paid the price.
Dave n Busters I’m looking at you.
At the end of the day, I didn’t make these decisions lightly. It kept me up for nights on end. It still does when you ask for help with your homework and still make comments about how I should be a teacher when I can barely work anymore.
Did I think this would be my life at 28? No. I thought I would have a family already, my dream job and life. But things change and that is okay. I accept them, you have to too.
I Don’t Need Your Pity
I know I am young. I know the average age for my illness is much older. And trust me I know I am too young to be this sick. Yet here we are. I don’t want you to look at me with that sad look as if my life is over. It’s not, it’s just different and it is allowed to be. It’s doesn’t have to be everything I planned. Or everything you think it should be. It can be new and exciting. I can enjoy the little things and big things, as I see fit and am able.
Here’s My Pitch.
Do you have questions? Well, good ask them. Don’t be afraid too. I would love to answer them. I will tell you whatever it is you want to know. That I know.
Do you know exactly what my disease is? Most doctors don’t either, isn’t that fun?
Have I told you I can’t do the thing you want me to do? Don’t ask me again. You will notice, by the third or fourth time I repeat myself it won’t be as kind. Which I don’t mean to do. It’s just–guys, I’m tired. Always. No matter how much sleep I get, or what I do. I could relax in bed all day. I will be exhausted.
And all I want is to make this easier for both of us. I struggle with canceling plans or leaving early. Being unable to help when I used to be able too. Not going to places I want to go. It’s always a fight and it’s not exactly one I am winning here. So let’s work together.