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.