But you don't look sick

When nothing about you is "normal"

Sunday, 25 September 2011

Nobody tells you it's terrifying.

Nobody ever mentioned how terrifying EDS can be.

Prior to my diagnosis it was kinda scary not knowing what was going on, putting a name to it brought relief of sorts. I knew when my body was acting up that it was just the EDS,and I didn't need to worry.

Post diagnosis brought a lot of emotions forward. Depression, guilt, questioning and fear.
When I was 18 or 19 I wanted to get a IUD (internal birth control) the doctor told me that they don't usually do that to young people. I explained that I have EDS and that my children would have a 50% chance of getting it, and that it could have a minimal effect or it could be more severe than I suffer from, she agreed. I didn't go through with it but the idea of having accidentally having a child who might have it was very scary.

A few years ago I realized that while everyone else seemed to have a 5 year plan, that it was incredible difficult for me to even begin one. I have no idea where I'll be in 5years because I don't know how I physically will be. And it stands true to this day. The only exceptions I currently have are that in 2 years I will be buying my first house with my boyfriend. The 2nd is that in 3 years we will go to Bora Bora for a vacation.

Around the same time as that realization my hands started hurt.just get stiff and weak. Then after a few days or a couple of weeks it would go away. It was then that I also realized that I won't be able to do my job forever. I started thinking about what else I could do. The only things I could come up with depended heavily on using my hands. But it might not be my hands that prevent me from continuing with my job. I have no idea what it will be, thus making it next to impossible to try and work towards that. Terrifying.

Lately I've been getting worse. After 10 years of going without pain meds other than over the counter ones that usually have no effect, I had to ask my doctor about going on something.
The pain has become to much.I read a paper that mentioned that part of EDS can be anxiety and depression. After being on more antidepressants over the past 10 years and none really working I thought hey maybe this needs to be treated as a side affect of my pain.
I've tried everything else without success, maybe this will work.
The decision to go on pain meds is a very hard one to make,a very scary one to make. I've made my choice and am trying it out. So far it's been fairly successful. Which in itself is also scary.

This week my hands and wrists have been worst than they have ever been before. At the end of the day I couldn't hold up my iPad to read,type or click on mahjong tiles. That my friends is terrifying. It dons on me that my days as a theatre tech may be ending sooner than expected. However I am far from throwing in the towel. Being as stubborn as I am I will likely stay at it longer than I really should. But I'm still not counting down those days. I will deal with it when that day comes.

What really scares me is how quickly things can turn for the worst. And the constant reality checks. I've been subluxing and dislocating things more and more. Tonight I've somehow managed to sublux a rib. I've never noticed if I've done this before. Scary.

EDS is a truly frightening thing to live with. I'm wondering what others do to help curb the fear?

1 comment:

  1. I have been frightened this week, too, more than I usually am. You are definitely not alone in feeling afraid. I'm mostly afraid because of the uncertainty. I might not get any worse than I am now, or I might not be able to walk or eat in a few years. It's impossible to know for sure.

    To help curb the fear..

    I talk to zebra friends. That helps the most. Having a network of people who understand this and who challenge it and don't let it swallow them whole, and they do this in as many different ways as there are people who have EDS.

    I go for a walk with the pup. It shows me I can still find joy in living in the moment. The future is scary, and hell, even the present is scary, but when I'm with the pup and all she cares about is tracking a scent or rolling in something disgusting, then I forget about all of that scary stuff. I just laugh. Oh, pup. She has hip dysplasia and luxating patellas, just like I do, but she's not depressed or moody or frightened by what might happen -- she just is living in the moment, and she's happy. Her tail is flicking and her only concerns are where that awesome smell is coming from and if she can eat it.

    I want to be more like my dog. I'll keep trying.