After posting about my attack on Wednesday, I had an outpouring of people who either commented on the post or emailed me personally to tell me I’m not alone. As comforting as it is to know someone else understands, it’s heartbreaking that there are others who have to go through this too.
I really wish that no one could empathize with me.
One thing about my attacks recently, they don’t last as long as they used to….but it feels like they do. I’ve had attacks last over 12 hours, the last one lasted over 3, the one before that was less than an hour, yet each felt as if they lasted for an eternity.
Angelea from A Day in the Life with Meniere’s said, “The only thing that keeps me hanging on through an attack is that, at least so far, they eventually end within 8-12 hours.” I’m the opposite, every time I have an attack, I’m terrified it won’t end. I know it always has…but what if this time it doesn’t….it’s unimaginable, yet…it fills me with terror. I’ve read of people having vertigo for extended periods of time. Weeks, months, years… indefinitely. Do they always feel like I do during an attack? How do they live? Or are they using the word vertigo loosely? I know it varies in intensity, but all I can think of is the terrifying sensations I get.
Most people who write about their attacks, don’t go into the detail I have. We all know they are horrible, but somehow I wished for my friends that it wasn’t as bad for them. I was even a bit surprised when I heard how much so many of you could relate to everything that was happening to me. (I really wish you couldn’t). We hear each other say, I had a bad attack complete with throwing up for hours….but we normally don’t talk about the rest. Thank you all for sharing your stories with me. People (especially our doctors) really need to understand the torture we go through. I keep wondering if these specialist we see have ever seen an attack. Do they just know what they’ve read, or have they ever experienced anything like it? Or seen a loved one go through it? (I plan to ask my doctor the next time I see him.)
I emailed my doctors. I heard from Dr. Gray already, and unfortunately she is also thinks that although I’ve had some good results with the patching, the results to not stay sustained, and this does not look to be a long-term solution. That was hard to hear, even though I already knew it in my heart. We’re waiting to see what Dr. Kaylie thinks my next move should be. I had good success from the endolymphatic sac surgery on my right ear. I’m almost positive that the majority, if not all, of my attacks since I had the surgery have been from my left ear. So that is a consideration. It’s a rough surgery, and recovery is hard. From what I’ve heard from two other friends their recovery was much worse than mine. So I do know there is a chance that it could be worse next time. However, I haven’t talked to Dr. Kaylie yet, we’ll discuss my options and see what happens.
I’m so confused by all of this though. I’m not sure if we’ll discontinue trying to keep my cerebrospinal fluid regulated. I would think that we’d need to do this. So many questions.
Again, I’m going into this bad time just as the holidays approach. Last year, I had to wait from early November to late January before I had my second set of patches. That was some of my darkest time.
I say so often, that I accept this illness, it is a part of me. But I think a lot of that is what I want to believe. Today, I broke down and just screamed…”I DON’T WANT THIS TO BE HAPPENING TO ME ANY MORE!” I thought it was better. If I could have seen this future in January, I would have spent those months symptom free so differently. I tried to get my life back, to start a future. I spent 30 class hours plus many, many hours outside of class, working to become a foster parent. I started a garden. I bought a car. I bought hearing aids. My life was all falling into place….then it came crashing down.
Now I look back. If I had known all that I was doing was wasting time. We won’t be able to foster. The garden died. I now have a car I may never be able to drive, and I have a hearing aid that sits in a box because my hearing has deteriorated so much in that ear it’s useless. ($2000 for 3 months of use, I don’t think that’s a very good bargain.)
So if I could have peeked into the future, I would have told myself to live every symptom free day to the fullest. Travel. Spend as much time with friends as possible. Go, and do the things you can! Don’t waste a day! And most of all, don’t plan for the future!
So yeah, I guess today I’m having a pity party.
I keep thinking in January, before the patches, I was contemplating suicide. I can’t go back to that. I just can’t. But if I get to the point where I’m having the horrific attacks multiple times a week…often every day…I can’t say that I won’t fall back into that deep dark hole.
No this disease is not me, I do accept that it is part of me….but when it takes over my life and becomes all of me, that, I can’t accept.
I know, I’m jumping the gun a bit, and have some major issues with regrets right now. I haven’t given up, and I’ll keep fighting for me. I’m not fighting the illness (as in not accepting it), but I am fighting for my life. For some balance. For some relief.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J, and NaBloPoMo.
Picnic with Ants 
Wendy, I have told you before that I think Meniere’s is the scariest thing I have ever heard of. I have nausea a alot, and dizziness rarely, and thinking of your attacks and what you go through is terible. I wish they could fix this.
mo
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To quote YOU, “So if I could have peeked into the future, I would have told myself to live every symptom free day to the fullest. Travel. Spend as much time with friends as possible. Go, and do the things you can! Don’t waste a day! And most of all, don’t plan for the future!”
Wendy, what a wonderful lesson to share with us all! You didn’t waste a single moment then, you were exactly where you were supposed to be because you were there – and are now here. You’ve just shared something profound that will stay with me for a very long time – you’ve made a difference in my life, and I’m sure that of others as well, by sharing so eloquently and honestly your experiences and insights. I appreciate so much that we’ve crossed paths and that I have a little bit of you in my life. A big thanks to Nicki, another Meniere’s partner in crime, for introducing us.
I’m not saying you, or any of us, are “supposed” to be suffering or that suffering has some divine purpose, just that upon reflection you’ve learned something from it and then you have the talent and creativity to share your insights in such a way that it affects others.
And besides all of that, the next time you have a reprieve from the misery, no matter how long or how short, you WILL do things differently. And, on the other side of the coin, had you been permanently “cured” and not pursued the things that you did, you may have had the exact opposite regrets at some point in the future. That’s life and we do what we think is right at the time with the information we have.
I turned the page of my calendar to November on Tuesday to find this quote: No snowflake ever falls in the wrong place. I am still meditating on that and it just seems to fit here so perfectly.
Hugs,
Angelea
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Angelea,
I feel so humbled. And so very thrilled that you felt I have something worthy to share. I often feel that I keep writing the same things over and over.
I too am so glad that our paths have crossed.
I was feeling very sad about feeling like I was losing so many of my friends. Recently, I realize how many I’ve gained. No you can’t spend time with me face to face, but you understand I can’t talk on the phone, and can’t go to a party…..you can really understand, and you support me. (you and the rest of our Meniere’s warrior friends) I’ve begun to feel very lucky indeed with the amount of friends i do have.
hugs
wendy
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Nothing wrong with a good pity party. They help us get through the really rough spots.
I have to admit, when I was reading what was happening to you, I cringed and would skip over some of what I was reading, (because, you know, if I don’t read it, it can’t be happening or happen to you again) though I did go back and make sure I read everything. It makes my heart ache and pisses me off that everyone has to go through this. That not enough is known about these horrible diseases and conditions that affect the ears and us and our loved ones. That so little research is being done. I could go on and on…we could all go on.
And while I know we would do things differently if we only knew, please don’t look on what you did when you were feeling better as a waste of time. You were doing what any of us would do. You thought of what you would want to do and you started making plans. It’s too easy to look back and say I should have done this or i shouldn’t have done that. We can beat ourselves up to an endless degree if we do that.
If I may suggest, look upon that period as a time when you could do things, you could think of what you would like to do and most importantly, you could even start planning and doing things to achieve your goals. What you did is what everyone does when they start feeling better. You and Stuart did things and in doing so you can look back and have no regrets that you sat back and really did nothing, not letting fear and the “what if’s” take hold. If, and I hope it’s actually when, you are feeling better, you and Stuart have some different ideas of what you would like to do and start putting them into place.
I know what happens to me pales in comparison to what happens to you and so many others. When, earlier this year, I was getting mild vertigo on top of the balance issues, I was not dealing well with it. I admire the courage and the strength that you and others show through your writings while you are fighting this horrible disease.
Maureen
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thank you Maureen,
I’m trying hard to to think of things as a “waste of time”…but I am starting to think of things differently. For everyday I have that I’m symptom free, or that the symptoms are tolerable…I will live it to the fullest. I will do more living in today and not thinking so much about tomorrow. For now, that’s keeping me a bit saner.
My vicious attacks, are terrifying, but so are the times when the balance just isn’t there (like most of the time lately), and the times when I have the mini vertigo feeling all the time…it’s all hard.
Never think that what you go through pales in comparison. Your whole life has been changed by your illness. Everything has been altered. That’s what it means for all of us. Our illnesses have changed our lives…we must include them. No matter how much we want to ignore them and make them go away. that’s the biggest challenge, and we all have that.
xo wendy
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