First, I’m feeling a bit better physically today. Not as much pain, and not having that weird feeling you get after being sedated.
This is the first time after having this procedure that I do feel like I had surgery. (I may have mentioned that yesterday. Forgive me if I did.)
Over the past couple of years my life had changed A LOT!
My biggest health problem went from being my hip, to the Meniere’s.
Almost everything in my life has changed dramatically starting in the winter of 2009. That’s when the Meniere’s came back full force, and I went bi-lateral. By April of 2010, I was getting the Endolymphatic Shunt Surgery in my worst ear to stop the attacks from happening every day.
It worked, for a while. By October of 2010, I was ready to talk about the surgery for my left ear, the attacks had returned, happening many days per week. That’s when I was asked if I’d be interested in the research study.
And if you’ve been following this blog you know the rest.
But just how has all of this changed my life?
- I wasn’t working when this started because of my hip, but planned to go back to work at least part time. That isn’t going to happen.
- I had a little reprieve from my symptoms earlier this year. For 4 months. I was almost normal. I took it for granted, and keep looking for the magic button they pushed to make it better again.
- I’ve lost a good part of my hearing. I can’t hear in my left ear, and even with my hearing aid it’s a bit off on the right side.
- I don’t know how to be a friend to my old friends any longer. We did things, went places, … you know things you do with friends. I can’t do most of these things now. Even when I am feeling better, my hearing is so off, I find it very difficult to spend time with people unless it’s one on one. Restaurants are horrible, Malls…no way, parties are often torture. Even just having one person, if they aren’t in front of me talking straight at me, it’s hard.
- A friend recently told me that she was hurt that I didn’t put more effort into our friendship especially during my good period. I look back and realize, I didn’t do much with any of my friends, I tried a couple of times, but my hearing was still such an issue. And people were very busy because, life went on without me, and I was crazy busy, because, life was restarting for me. It was difficult to get back in the swing of things, by the time I finally felt I was finding my footing….it all came crashing down again. I look back and think…if I had known this would happen, I would have spent that 4 months much differently. (certainly not spending most of it trying to become foster parents! That’s not going to happen now…but I didn’t expect to only feel better for 4 months. So most of that time, we spent wrapped up in trying to be parents.)
- So I realized, I don’t know how to be a real friend to the people who were my friends prior to my illness. I try hard not to have my illness be my life, but in a big way it is. I have to think about everything I do….how will it affect me, and my illness. How much will it take out of me.
- When I do see my friends I try to look better. I get out of bed, if they come over, put on something decent (even a bra!) and at least make it to the couch. Lately, that’s a very big deal.
- When I was feeling better and driving, and would try to meet my friends, I was scared. I hadn’t been spending time with most people for a while, and I was uncomfortable, talking with them, trying not to talk too much about me. But my life was changing so much, that was hard. And now, my life is static, and it’s even harder.
- Many of my friends don’t like to email, text, or IM…and right now that’s the only way I can communicate. So it’s hard.
- I can’t keep my house as clean as I’d like. We decided to get cleaners to come in, but that might not happen again….(more about that later).
- I feel like I really needed some time away from here..away from this house…..just a change of scenery. I was scared about seeing my friends in Tucson, how they might react to my hearing, and health issues. But we’ve been emailing and texting…so I don’t think it would that big of a deal. My best friend there is Japanese, so she has a hard time communicating too, I think that makes her more understanding about my communication issues. But, the trip isn’t going to happen. (again, more of that later.)
I’ve been feeling like I couldn’t post a lot of things lately. Things that have really been weighing heavily on me. (like not knowing how to be a friend….I don’t want to be just the “sick friend” people tolerate. If I’m your friend, I want to be more than that. And right now, I don’t know how. I can still listen and try to give advice (if you are willing to “talk” with me by writing.) But it does seem to take a lot of the personalization out of the situation and I know that’s hard. I realize how hard these things are for my friends, but I wonder how many know how hard it is for me.
They have their busy lives…I get to watch the world go by without really being able to join in…they can work, exercise, have children, go to dinner parties, go shopping….things normal people do. I can’t. And it hurts…down deep inside…that I just can’t. I don’t fit in. And I don’t want to be pitied.
Oh, and our house is only 4 years old, and we have to get a new toilet. For the master bathroom. They said it would be cheaper than fixing it. It broke where the tank and the seat are connected. So one night I went downstairs, and found water everywhere. So I’m worried about possible mold problems. I’m being shrugged off about it. Just put a little Kilz on it….on the ceiling downstairs, yes…but what about between the upstairs floor and the ceiling downstairs? We had to move from a rented house once because of mold…I don’t want that to happen with this house.
Another straw landed on this Camel’s back today….I think I heard it snap!
Stuart was told his job will end in one month. They’ve decided they can’t afford him. *sigh*
He has an interview tomorrow. But this breaks my heart. I feel like he will feel he has to take the first thing he finds that pays anywhere near enough, just so we can survive. I can’t help. I can’t do anything to bring in some income. I really want to do something.
But surely, it will get better from here.
Things have to go up from here.
I feel like I’m one of those old cartoons that have been flattened by an anvil…..now just peel me up and pop me out…and things will be better!!
Oh heck, we’ve been through a lot, we’ll get through this.
Life is changing again.
Perhaps it’ll be fun.