Wednesday, August 19, 2015

Metaphorically Wrapping Myself in Bubble Wrap

Quick note about why I've been MIA lately...

Has anyone ever planned anything in such detail that they feel their brain may explode? I have been planning this London trip so meticulously that I am getting sick of planning and just ready to do it! But I have to admit and can't deny, that I am quite nervous but also excited to start this new chapter of my life. I'm corny and I always look at everything in my life symbolically. Being able to do this trip means a lot to me because it signifies the sheer determination I've had to pave my own path and come this far. There's always the possibility that, worst case, I can't do it. I can't finish and I have to move home. In any case, I don't think I'd allow myself to get that bad but mentally, I've dealt with the possibility and am prepared.

BUT, if for some reason, there is some other crazy lunatic with rare and chronic pain who happens to stumble across this page and is planning on moving to another country to study for their masters, I have discovered more things from global health insurance down to using paper plates instead to dishes to lighten your load in my course of planning. I am still generally feeling very overwhelmed right now and eventually plan to write out everything I've discovered when it is in fact actually successful. I hope to continue writing for HuffPost once I get some more writing inspiration when I am moved and settled in. I am prepared for this first month abroad to be hectic and most likely painful. I am taking every little thing that could potentially go wrong and think of at least 5 back up alternatives coordinating to the severity of pain. (The following really isn't in any major order--just ideas I've brainstormed that never would've occurred to me before I actually put time into thinking about it.)

ie. dishes
1. one pot meals/secret pinterest board for quick healthy meals with minimal clean up
2. tall chair at the sink to sit
3. take breaks, let dishes soak over night
4. use paper plates, cups, silverware
5. takeout

(This is just how my brain works now.) Solutions to dumb things no one thinks about--unless you have chronic pain. Since I've been diagnosed, I am not used to doing chores so it's something I've worked on with trainers, OTs and sought out the advice of others in support groups online. I don't even know how it happens but every day, for hours (with some periodic Instagramming), I am generally working on this move.

I keep telling everyone for now, I am metaphorically wrapping myself in bubble wrap. I am desperately trying to keep my life stress free, organized, not exercising too hard training, from trying any new drugs or therapies and that is NOT an easy feat-- ie. "You may have SIBO, you should do x test and follow x diet and go on x antibiotics" but it's happening all the time. I am also very concerned my doctors in London may be pretentious and try and change everything from therapies, to drugs to diagnoses. Right now I am comfortable with what I've got and I'm generally getting better, but I anticipate a lot of arguments with doctors. Finally had a medical team here in the States that mostly just let me do what I want and for anyone reading this that knows me, knows I work best that way. I have heard from other people with EDS that many of the medications I take will be strictly limited to me in England and only provided through IV or "in crisis".

As of now, I am staying zen and confident with all this planning, that things will work out if I am smart, don't panic and stand my ground.

xx, E

PS. I'm 99% sure you will enjoy this video.


Tuesday, August 11, 2015

Checklist to let your friends/family know how you're feeling..

Sometimes I find it hard to explain to friends (especially new ones) and family what kind of day I'm feeling, but this list lays it out nicely.