“Are you feeling better?”I hear my loved ones ask. My Fitbit group I started a month ago is still going. I, when well, can put in 10,250 steps per day. Yesterday, I put in 4000. I was nauseous and the room was tilting.
I am at that place with this illness I believe an addict would describe as their rock bottom. I have not slept a full night in five days. Sleep deprivation and vertigo exacerbate each other. How can I describe this as rock bottom, when I am not an addict. Well, my family is affected by this illness. I don’t have any idea what to expect anymore. The random nature of the symptoms makes it hard for me to have hope that I can follow through on even the smallest commitments. My quality of life goes from a gleeful hope as I manage symptoms, to a deflated Shelley, who has lost her umph. The cycle of ups and downs, of feeling steady enough to walk/run five miles a day, to dance to Prince in my den and cut up with my kid and her friends, be the authoritative parent I can be, to a woman leaning on the wall for strength barely able to walk down the hall, feeling as if she is parenting from a distance instead of in the room, is a cycle I can not keep repeating.
There is an answer, as I have been awake since 4:00, to this problem. Yes, I have seen doctors. But, it’s time to get aggressive with this inner ear problem, this Vestibular Disorder.
I know what I need to function with it and I am not getting these things. I need 1. Sleep 2. Time for the Brain Training Exercises which I can feel give me control over my balance, but are not possible without sleep 3. Time to keep my neck stretched and relaxed 4. Prayer and meditation time which is easy to find for me 5. Medication 6. Support from family and friends.
I believe knowing what I need is huge and it has taken over a year since it worsened to learn these incredibly helpful factors. So, even though I am feeling pretty frustrated right now, knowledge is power. I feel that knowledge has been hard sought. I have three types. I have the benign positional vertigo, cervical vertigo-affected by neck tension which decreases blood flow to brain, and Vestibular which means there is something that intercepts my brain’s reading of how my body is in space. Benign positional is most common. It occurs when crystals in the ear do not exist where they are to be naturally. There are many exercises involving tilting of the head and moving that help with that. Honestly, the positional just is not that big of a deal to me. It goes and comes. The neck can make me feel very lightheaded, which contributes to the dizziness. So, a nice hot shower and some good neck stretches can totally relieve it. Really. The Vestibular part is pretty tough. I have to be awake and alert enough to maintain my focus to turn my head side to side while focusing on a stationary letter on the wall. The room will tilt. I will feel myself pulled in directions as my balance shifts. It’s exhausting. Hence, sleep deprivation is no joke.
Okay, all of that is pretty depressing. So, what am I going to do about this? My fighting it attitude I chose last week, I must continue to grasp onto, even as I feel these symptoms and the frustration. It’s time to do whatever it takes.
I don’t know what that will mean. But, I signed up with an amazing doctor three months ago. He is very personable, resourceful, and he cares. So far, I have done the usual, seem my ENT once a year, gone for physical therapy, and waited. Well, neither I nor my family deserves to have to wait another second. At this moment, I am committed to my journey to better, my journey to being myself again.
I am no quitter. I have been waiting until this flu epidemic passes to get in to see my doctor, but I am doing it. I am going to be forthcoming about all that I have shared in here. I am ready.
This year has been a good year in so many ways. Getting to see Hannah enjoy band, and find her way, which she is. Getting to go on a great cruise with my family and bring Hannah’s friend. I have loved starting up my eBay business. It’s amazing to find something that I can do right here in Fairhope and in an amount of time which works with my family’s schedule.
But, being sick repeatedly, is like being a runner who stumps his toe every other mile of his race. He can recover, get the motivation to go again, and again, but at some point, he has to stop stumping his toe, or find a different way to run his race. I am a lot like that runner. I can’t keep stumping my toe.
So, at this moment, 6:20 AM,Wednesday morning, I begin my journey to better. I don’t know what better will look like. If better means changing how I structure my days. Or getting more help with my daily responsibilities, then that will be my better. Or, if it means getting some sort of treatment that is different. I would love to have a prognosis, or a medicine change that worked. I would love to know what to expect. My journey to better means finding out everything I can find on how to function with vertigo, or how to get rid of it, and how to go from there in a way that I can have a quality of life in which I am fulfilled again.
I am sharing this moment, because Father Dee, my priest, talked about sharing when you struggle, and that we need to be honest with each other in church about how we are. Having put my name on the prayer list two months ago, I have felt support. I have felt love and a nurturing from my church. I have also found that in sharing, one makes a commitment to moving forward. I can not forget my commitment now that I have written this post.
Please do pray for me and my family. Pray I find out more. Pray I am bold and do not give up only to repeat the cycle of feeling better and feeling sick so often. This post may be a bit of a step out of a box in which I should have kept closed to me and my family. But, I don’t think so. I think it’s a part of my healing journey, and I am continuing forward.