It seems appropriate that I’m writing this on the eve of a new year, what better time to look toward the future?
For me, contemplating the future is more than a little scary…. let’s just say my anxiety about it has been more than I ever thought was possible.
After my illnesses changed my life, I learned about Mindfulness Based Stress Reduction (MBSR), it struck me how it has helped many people in many aspects of life, but mostly I was struck by how much it often helped people who are ill. I had already learned of mindfulness during my studies in Buddhism, and while practicing yoga, but I admit I didn’t practice it regularly.
Over the last few years I’ve learned more and more about mindfulness, as I continued to studied Buddhism and MBSR, I’ve worked hard to live my life in the moment. I don’t dwell in the past, (all of that is gone)…. I don’t worry about the future, (that hasn’t been written yet)…I try hard to live in this very moment, because that is all we truly have.
Yes, at times I still have moments when I get upset that I can’t do what I used to, and get upset about what might happen…but I don’t dwell on it.
Then we started making plans… how we are going to try to make things better for me….decisions about this unknown future, decisions that I have to make. Suddenly, I HAVE to look at the future. I HAVE to think about it. And it really scares me. Suddenly, I’m scared about being like this forever. I thought I had accepted that and was okay with it. Not that I was giving up, just that I accepted things if they didn’t change. At least that’s what I thought, but actually, I thought I was going to be like this forever, I had come to terms with it, and now, that may change. Now, I suddenly have options….plans. I am having a very hard time not being anxious about the future. I’m even thinking about things from the past. I keep thinking about all that I can’t do now, and how much my life has changed, and I keep wondering, could I get some of that back? The main thing I know is that, I don’t want to lose myself in this quest to get better. I don’t want to be afraid. If I don’t get better, I need to know that’s not the end of the world. I don’t want to start having to accept all of this all over again.
Each day I have begun to get more and more upset about things I simply can’t do. As usual, most days all I can do is go from the bed to the chair in the living room. But I tried hard not to let this get to me before. I tried hard to make the most out of every moment…no matter what. I’m trying now….but I am not doing as well as I have been. Then I hear the voice in my head….Be Gentle With Yourself. and I Breathe. I am doing the best I can. Yes, I’m a bit overwhelmed right now. Everything is changing, all of a sudden, it’s going to take me a minute to keep up with it….deep breath….and I must remember, it still has to happen one moment at a time.
Okay, let’s move on from this and let’s talk about what the plan for my future is right now.
I was going to write a post right after my visit with the new ear doctor here in town, but I decided to wait until after the tests and the results. I was supposed to get those yesterday, but I had to reschedule my appointment, guess who was too sick to go? Surprised? I’m not….I have cancelled so many appointments because of vertigo, you just can’t imagine.
So, I’ll give you a break down of what is going on as of now…..
I saw the new ear doctor here. So far he seems pretty good, I was impressed with his knowledge about Meniere’s, and he is very willing to work with the doctor from John Hopkins. He suggested I start taking a low dose of Valium twice a day to try to keep my vestibular system calm. He wants me to keep track of how much Sodium I’m eating. (Okay, I laughed at that. I know I don’t intake much sodium but since I haven’t been keeping a record he was not convinced. I have been eating a low sodium diet for years, I know how much sodium is in almost everything, I don’t eat processed foods, and if I eat out I order everything without seasoning….yes I know that is boring, but it is safe with all of my food issues. So I tracked my food since I saw him, I admit I was curious too, the results? I normally consume just under 1000mg a day, I haven’t been over 15o0mg in any given day. They say a low sodium diet is 2000mg a day. I don’t think I have a problem there.) I’m starting vestibular therapy on January 12th, we’re going to start training my eyes and body to balance without my ears. I am to continue working with my headache specialist to get my migraines under control. We will talk more about killing off the balance center after doing all of this and seeing if it helps. Also after seeing the results of the vestibular testing I went through, we want to see if one of my ears is close to being dead already, if so we may go ahead and kill that one off, it may be causing much more trouble than the other.
(just let me say, I’ve been through these tests before and it wasn’t so very bad the first time, this time, it was absolute torture. I cried. I am not that kind of person. If my husband hadn’t been back there with me, I don’t know how I would have gotten through it. The person giving the tests told my husband she thought I was suppressing, because some things that should bother everyone I was not showing too much of a response on. I thought that was strange. I didn’t feel like I was suppressing, but after I’ve been going through this for so long, I’m sure I automatically try to not have vertigo when it is coming on. I didn’t throw up, I almost did, I had cramps like dry heaves were coming, but no vomit. Yay! it really takes a lot to make me throw up now. I rarely throw up during an attack now. I get really nauseous, but I rarely throw up. I always thought it was the meds. Heck it’s already ruined my teeth and caused burns in my esophagus, I’m very happy it stopped. Anyway….I’m very interested to find out the results of the tests, and upset I didn’t get to go yesterday.)
He does think my Meniere’s is definitely autoimmune. Not that I want an autoimmune disease, but it does explain a lot. Most of my doctors have felt I have symptoms that lead to one, but haven’t been able to put their finger on it. I just have so much going on, and everything gets worse with stress, and gets better with steroids. I often run a fever and no one can find a reason. I have a marker for an auto-immune disease, but the one I have a marker for I do not test positive for….however, that is a red flag that I could have another. They believe they simply do not have a test for the autoimmune disease I have, or I don’t test positive for it. Like a friend of mine, has rheumatoid arthritis, but he always tests negative for it. It is visible on all scans and he responds to treatment, but the test for it comes back negative. So, in other words, we can’t prove it, but it is thought that it is an autoimmune disease, at least in my case.
So, there is the plan for now. I don’t know what will happen. How it will change. Or anything right now.
I feel that there will be a lot of change around the corner.
The future is scary, but it holds promise, and hope…..something I haven’t had in a long time.