I wrote my last post with just joy in my heart and feeling better than I had in as long as I can remember.
Then I crashed.
That evening I had a bout of vertigo, but I would not let it put a damper on my day. It was a glorious day, and I will hold it in my heart.
But it’s over, at least for now. Forgive me if this post doesn’t make as much sense as it should, I’m writing it as I watch the screen dance before my eyes. This is incredibly difficult, but I felt the need to tell everyone I’m not doing that well and I wanted to talk about it.
For nearly 3 days now I’ve had vertigo almost constantly. It may be slow at times where I just barely see the world moving, other times I can still handle it, it’s very hard to focus on anything and I can’t hear very well. Then I have times like I did last night. I was so sick. I didn’t sleep until 4am. I fought then nausea and vomiting. I had severe stomach cramps and feel like I threw up all night, but I’m happy to say I didn’t. (thank you to all my medications, and my darling husband who stayed by my side and chanted with me for hours).
I’m amazed at how much this has changed over the years. When I first started getting vertigo, and when it only came around a few times a year, I would have been throwing up for most of the last 3 days. I think the biggest thing that has changed is that I rarely freak out from it now. I don’t fight it. I know what’s happening. I try to just go with the flow. That doesn’t mean I don’t panic and that it doesn’t get to me, after a few hours I’m freaking out a bit. What if it never ends.
This makes me not want to live. I’m stuck in this chair, I can’t walk by myself, I can’t even use my walker most of the time without falling. Stuart and I have to walk in tandem to take me to the bathroom. I have my head on his chest and he walks backward to get me there. This is not a life.
I can’t communicate well. I can barely understand anything that is being said. I can’t focus on anything most of the time. Literally, right now I am typing on a computer that is swaying on my lap. If I didn’t type by touch, you wouldn’t be reading this.
Last night I went to sleep hoping to not wake up. Don’t worry I’m not suicidal, I just want live like this to end. The only way I can see this stopping is to not be here anymore. The risk with the gentamicin is so scary. I just don’t know what to do. Plus finding a doctor who would actually do it, well that’s a whole other thing.
My new doctor has mentioned steroid injections. I’m not sure it will do anything, but it can’t hurt to try. If I can hold it together long enough to get it done. And handle the side effects that are sure to follow for a while.
If I can get through more days like this. Days where the world spins at what ever speed it wants. Days where I can do nothing but sit here and wish for it to stop. Days where the steroids are making me so hungry, but I’m so nauseous at the same time. Unfortunately, the hunger wins most of the time. So I guess I’ll sit here and eat and just pray that this there is something that stops this. Something inside me that can slow this down enough that my eyes and brain aren’t so tired from trying to make sense of it all.
What do I do. I try to remember that is will not always be this way. It will end. I will have some relief. I have to believe. I will admit that is my biggest fear, that it will never end.
If you walked in my house right now I’d look perfectly fine, minus the few tears on my face. I’m sitting in a chair, staring at the computer, the TV is on in the background, hubby is sitting in another chair munching away. I look like I’m perfectly fine. But I’m fighting like hell just to hold it together.
This moment. I can get through this moment. I know I can. The next moment isn’t here, things will change. I know it will. That is the constant in the universe, everything changes. I will be in this moment, as crappy as it is, but I know it will change.
Sometimes that isn’t a good thought, I know this change could be worse. I’m not good with worse right now.
When people who have never had vertigo here me say, I’m having an attack, they have no idea what I’m talking about. However, I think when those of us who have vertigo mention, we had an attack, or we are having an attack. We don’t think about how bad it really is, until it is happening to us again. And we don’t think about how different vertigo can be for different people. I have found myself thinking, “If you are having an attack, how could you possibly be typing?” Yet here I am. When I only had the most horrific vertigo attacks and I heard someone say they had vertigo and it wasn’t like mine, I wondered, “Do they really know what vertigo is like?” Now, I can’t judge. I understand. Vertigo can manifest itself differently. You can see the world rotate, at different speeds, it doesn’t always have to be so fast that the world is a complete blur, it can mean that the world is slowly rotating, I see things they simply will not be still. Both are vertigo, I can just handle one better than the other.
Then I’ve found you can have vertigo where you feel you are moving but you don’t see anything moving. Most people say they feel like they are on a boat or something similar. I do have this kind of vertigo too, for me this is not as bad at the visual vertigo, for others this could be much more dramatic. I was rushed to the hospital once because the vertigo made me feel like I was being tossed around the room and I was completely still. I threw up a lot during that one, unfortunately I don’t think the ambulance attendant got out of the way of that once. I knew something was wrong, I thought I might be dying. I remmeber telling Stuart if I died I was happy everyone I love knows it.
When we got to the ER, they couldn’t do anything. Pumped me full of more of the meds I already have at home and told me that vertigo can make you feel like that. Inside I freaked out thinking, “I could feel like this again?” Now I have this recurring vertigo where I’ll suddenly feel like I’ve stepped into an open elevator shaft and I just keep falling. Stuart will hold me so tight and tell me I’m not falling, but I am. I know I am. I see the world rush by, I feel my body dropping. It has happened once without him here and I thought there was no way I could get through it. I did. But I never want to do that alone again. I never want to do it again at all, but that is kind of unrealistic.
Again, I want to assure everyone I’m not suicidal. I do believe this will stop. If it doesn’t there has to be someway that I can learn to live with it.
I didn’t post this when I finished because I started having much worse vertigo and I couldn’t see the publish button anyway. I might be able to type by touch but I can’t see that dang little cursor. This morning things are better. I’m still swaying, things are still a tad off, but it’s better. In this moment. that’s the only time I can count on.
Everyday He Loves Me
I got my first cochlear implant (CI) in July of 2011, and my second in September of 2013. When I was going through that time I wrote some about it but I’ve never talked about what it’s like to live with my cochlear implants (CIs). A friend of mine asked me a few questions about it recently. I’m here today to answer some of those questions.
Picnic with Ants 