Sunday, September 10, 2006

Normal would be nice

I am starting my third week of grad school on Monday. And I have a fever of 100.2 ... marvelous!
This really frustrates me. The problem you ask?... I have been trying to do too much right off the bat. I am trying to be "normal". Doing things that other people want me to do, and truthfully, I want to do most of the things too.

Things that are zapping my energy/stress me out/in need of processing:

1) forging new relationships in and out of school.
-my current friends know all about my health issues and accept them. They have had time to
process the information, and don't hold it against me when I am too tired to do something or
call them back.
- I haven't had as much time socializing as most people my age have. They have gone on plenty of
dates, had relationships, etc... I haven't. It's all as new to me as it was to most people in high
school. ( I was in HS for a year or two off and on, and dated a bit, was in a two year
relationship, had friends...but not to the same extent).
- So I freak out REALLY easily! This is especially true with the opposite sex. I'm just now
comfortable around guys that I have known for a semester... see how wierd I am?
2) school work
-reading and studying can be difficult and energy consuming for me. My mind does not work
like everyone elses. I can't always verbalize what I'm thinking, which makes me look stupid
-if I end up sick, the work is even harder for me. Concentration is a joke!
3) adjusting to being away from home
-calling my mom and letting her know what I'm doing etc... I realize I shouldn't have to do this
at my age, but if your mom had been through with you/done for what she has done for me,
it's a small price to pay to keep her at ease.
4) keeping existing friendships in tact
-getting to do things with friends is a favorite use of my energy, but often follows after school.
So I don't always have the resources to do what I would like to do.
5) explaining myself
--I feel like I always have to account for my actions as to why I can't do something, when
in reality I should just let people deal with it and not worry.

Well I feel a lot better now, although I'm sure I sound like a complete loser and a wreck. But you know what? I have friends and family who love me, and my health comes first.

And I hope to take all of these difficulties that I encounter, and use them as tools to allow me to help other people with chronic health problems cope, live, learn, and love.

That's all for now! And comments are very welcome!

Some background to help you understand me...

Before reading my posts and thinking I'm a whimp who can't deal with every day pressures, do a little research before drawing such conclusions.

Try going to the website and click on the link "living with cfids", take those suggestions out for a spin and see if you understand a little better.

Also, CFIDS is not my only health condition, I have a genetic connective tissue disorder which keeps me from healing properly and I sustain injuries very easily. A blood pressure disorder, a chronic pain condition which is enhanced by the connective tissue disorder, TMJ, allergies, asthma, and on top of everything else, a Chiari malformation and cervical stenosis.

I underwent surgical correction for the chiari malformation at just 17 years of age. They did what is called a suboccipital craniectomy. This is where they go in and remove a piece of your skull to make room in the crowded area. (Sounds simple, right?) Well, in most people they would put in a bovine patch to take the place of your bone. But in my condition because of the added complications of the Ehlers Danlos (connective tissue disorder) and cervical stenosis, the patch was not a possibility. So yes, folks... I have an extra hole in my head.
Before the surgery I was bedridden, physically unable to walk due to numbness. This numbness was the precurser to flat out paralysis...and after the paralysis sets in, death is possible. All the while dealing with this, I had doctors telling me there was nothing wrong (sorry ya idiots... if you can't feel your own body, something is wrong). It wasn't until my films were sent up to my specialist who saw what he had feared and then on to a facility who was familiar with these films that they were able to see the problem... and then fix it. FINALLY!

Okay, so now that you know the background... I can go on to my next post