But you don't look sick

When nothing about you is "normal"

Wednesday, 28 September 2011

My new narrative

Today I had a telepsychiatry appointment at the hospital to review my meds. First of all he was very nice, but he looked like a muppet.

Anyway we talked a little bit about how I worry about the uncertainty of the future. He pointed out that the future in fact does not exist, so of course it's uncertain! And that it doesn't usually matter how much we plan for the future, life tends to get in the way regardless of how carefully you plan. This is something that I do believe and did before he got all Muppet arms on me. Serious Muppet arms and upper body action happening here.

As much as planning provides us with a sense of relief and preparedness, the more effective thing to do is to change your own inner narrative. We all have on . It's what we expect to get out of life, whether positive or negative. This shapes our future more than planning 'just incase' ever will. It's sort of exercise in personal goals, but without the time lines and pressure. We all know that people who know what they want have a tendency to get what they want because their life choices bend towards achieving them.

So I am creating my own positive inner narrative, regardless of how my EDS changes over the years, no what ifs. This is what I want for my life and I will create short term goals to get there. I'm going to share it here because I think when you share things with others it solidifies it in your own mind, and you can always go back reread and change this narrative.

First and foremost I will be happy! I will do the things that make me happy, be with the people who bring happiness and joy into my life, laugh and be silly. This is achievable no matter what my physical state is. I will make the most of every day. I will stop thinking "I need to do this while I still can". Especially when it comes to traveling. I will always be awed by nature and the world. The experiences I get from traveling will still be fulfilling, the people and places still beautiful. I will not give up hope. The future doesn't exist so there's nothing to be afraid of! Fear only holds you back. I will always find a way.

Now onto my 'vision' of what I want my life to be. I want to continue growing and evolving my wonderful relationship with my Mister. To laugh, love, support, be silly and strong through whatever life throws our way. I want us to have a home together.(preferably with a puppy and maybe a kitten,a garden to grow things in, and a kitchen with a window. kids are to be decided eventually) I want us to travel together, experience the world and all it has to offer. ( somewhere nice and warm this winter, Chile or Argentina soon, and Bora Bora in 3 years!) I want us to continue to enjoy each others company and find solace, comfort and warmth with mere presence. Continue to do crosswords together and make fun of each other as the wrinkles appear.

I want to continue to have a close relationship with my family. Travel with my mom, silk screen all night long, share recipes and hugs. Support and continue to be proud and amazed of my sisters. Joke around and be a part of my nieces and nephews lives, be the 2nd mom every child needs.

I want to always have a job that challenges me and that I love. I want to find more time for my hobbies. ( I have way too many of them! Beading, silk screening, painting, reading, sewing.....)

I want to read everything I can possibly get my hands on!

I could probably think of many more things, but these required no thought. I can achieve these regardless of what EDS brings me in the future. As EDSers and human beings we often don't give ourselves enough credit. We especially need to remind ourselves of our bravery, courage and strength. We are motivated people, and regardless of what life hits us with, if we remember these things and what we want out of life then we can adapt our situation and make it happen.

What is your inner narrative?

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?

Saturday, 24 September 2011

My story

Everyone who has some sort of illness or syndrome has a story. This is mine.

When I was a kid I had all sorts of neat "tricks" I could do. I could put my feet behind my head, do the splits, fit in really small places, pop out my pinkie, touch my thumb to my wrist, pull my skin out a pretty good distance, ect. The most impressive trick I had was to lie on my stomach and bring my legs up and over so my feet were beside my head.

Of course there were lots of other things that weren't so much fun. For instance, my grandma would always get mad at me because when I walked my feet just kinda flopped around. Not in a straight line. She would get me to walk for her to show my mom or someone and since I was paying attention to my walking it was fine. One day we had been walking threw fresh snow, when she made me turn around and look at my foot steps. I couldn't believe that I actually walked like that.

I also happen to be very good at sports. I would play anything! This of course meant that I got injured a lot. I'd pop out my shoulder pitching and since it went right back in I didn't say anything. I played hockey and skated on my ankles. (I was still one of the fastest ones on the ice) I was always getting hurt and bruised and whatnot. Eventually my mom would get frustrated with me when I'd come to her, I didn't understand that she wasn't mad at me but just couldn't understand how one kid could get hurt so much.

The beginning of my journey to a diagnoses happened when I was 14. We were in gym class playing co-Ed volley ball. My teacher wanted to demonstrate how to spike, so I volunteered.
I dislocated my shoulder. I was later told that it had been a perfect deep spike into the back corner.

Went to the ER in a sling was given some Tylenol and sent on my way. Except it didn't get better. I had a small tear in my rotor cuff. I was told that I didn't need surgery, since I was young and would heal quickly. Well turns out I don't heal quickly.
I also was throwing out my back all the time and dealing with a lot of pain. Including shooting pains, ridiculous headaches, easy scarring, tight tight muscles, really sensitive skin, insomnia, anxiety, depression. I spent 3 1/2 years going from doctor to doctor, hospitals and clinics, and having so many tests done I was a pro at MRI's. And yet we only found out that I have scoliosis.

I hated going to the doctors, they never had anything positive to say. I was told that I shouldn't play sports. That broke my heart. It was what i was good it. It was how I dealt with my problems. It wasn't uncommon for me to cry before or after an appointment.

One day my mother and I were at sick kids hospital. The doctor had left for something, and I started pulling at my skin making faces. He happened to walk in while this was going. He left to go get a few more doctors. I layed on the table while they pulled on my skin and then on each others. He thought I might have EDS. He gave me a referral to the genetics clinic in the hospital.

I got diagnosed on a fluke.

When I saw the genetics team they asked me to do my tricks, and gave me a positive diagnoses. Told me to call when I wanted to have children, handed me a yellow 1 page brochure and send me on my way.

Moral of my story : laughter is a great way to cope. And silliness is very important at every age.