18 October 2010

where have i been?

the usual. what does my brain feel like right now? an ordered mess. i have ideas i want to explore, yet my body lets me down at every turn. well thats a bit dramatic of me, the eds is allowing me a few hours each day to spare.

ive attended a few more appts. last saturday i was a meaningful citizen. due to eds being rare, very rare indeedy, 8.30am i was sitting waiting for a doctor to examine me so he/she could either fail/pass the test to continue their life as a consultant. yep it was the examination weekend at the local hospital and foolishly (i only thought foolishly on saturday at 6.30am) i agreed way back in july to do this. an hour into the exam myself and four others were still sitting in the waiting room to be called. luckily two of the staff from the hospital which i know well now where there pretending to be patients that had yucky diseases, we had a chuckle of a time laughing. the co-ordinator nervously approached me apologizing that they couldnt use me! apparently im just toooooo rare. i was given a brown thank you envelope and was sent on my way.

last weekend i was able to go to my aunts. she lives in a sleepy village near stratford-upon-avon. i had a couple of breathing turns, which settled after ten or so minutes. i even paced myself, which helped with the returning week, although still tired, i was ok. the break was almost like a mini holiday, the village so pretty, oh i wish i could live somewhere as pretty as there.

strange things are happening. on rare occasions, im suffering less from blasts of anxiety. so im stretching myself a little more. i think what ive learnt from this illness is the worse that can happen. the breathing gets me the most, to be unable to breathe is an horrendous feeling, something that ive not really experienced before.

not being able to get the doctors to believe that there was something wrong with me for the past two or so years was quite frankly devastating. being sent to hospital four times before admission in a terrible state only to be sent home again, well nothing quite touches those experiences. so when remarks are made, tuts are witnessed, car parking spaces are hijacked, a turn of the head when some one passes me in the wheelchair, well what are all those things compared to last years traumas?

ive a long way to go with myself, my life, ive a lot to work on, to pick up where i left off. with meds, with drs, with a life changing diagnoses, things may work against me, or for me. we will never all be liked all of the time. we will never like all of the time. theres a way round everything ( as my dad likes to inform me) now i finally have the knowledge with what is wrong with me, im just finding my way around things.


Anonymous said...

Hi Em,

Glad you had some fun at the hospital which must be a rare commodity- I speak from experience. Such a shame though that they took so long to decide they couldn't use you. Preferably they could have made that decision before you left home.

Sounds like you had a good time at your aunts and good to read you are managing the breathing problems so well- I'd be off home the second they happened. And so good you are handling the anxiety so well as reading your posts you do seem to have discovered a new found freedom as a result.

A nice end to the post too, very psositive. I really can't begin to imagine what last year was like for you but I am glad things are going so well for you now in other areas.

All the best


Em said...

hi nechtan

i really havent got a handle on the breathing issues. its such a terrible feeling, i do sit with it but wow are they difficult. the biggy would be doing things on my own, which at the moment is a little hard because i cant walk! i think that will be when the challenges really, well challenge me. x

Achelois said...

Em, your final paragraph is so wise. EDS is a confusing condition. It has so many strings to its bow. Your positivity is an inspiration. You 'do' in many ways far more than I. I am sucked into family life admist a certain chaos.

I understand your explanation of an brain in ordered mess. EDS teaches patience by default, filing dreams and aspirations into order of importance.

I find planning anything difficult, do you?

Breaks away are a tonic but in their own way tiring. So to pace and survive is good so good. A beautiful part of the world for a mini holiday.

You have had so much information to process following on from diagnosis. To spend all that time not knowing then ending up recently at the hospital as too rare a specimin is just surreal. To go from being misunderstood to brown thank you envelope's is fodder for a novel I think. Titled - From me to rare and back again!

There is a way round everything em. Thank you for reminding me on a day when I needed reminding.


Em said...

hi achelois

patience by default, how true. i certainly wasnt a patience person before all this. i have no choice now to take things slowwwww.

planning can be difficult. i was going to my aunts in the summer and had to cancel the day before due to feeling unwell. the old me would of been feeling very guilty. this me, well i couldnt do anything but stay home, i was unwell. theres always a tinge of sadness, yet this illness does take over at times theres no denying that.

im still learning about this illness, thanks for writing about your experiences they do help in a rare dx world, without the internet i would only have the info the drs gave me. x