Wednesday, 16 September 2009

Let me entertain you!

I have the honour of having a condition that affects my Nerves.. you cant see them... but boy is it here!!.. It is not a very well known condition so when people ask what is up with me i tell them, there always seems to be a blank look on their face. I mean it cant be that bad can it otherwise i would of heard of it wouldn`t i.. so i go on to explain what it is.. and as i do i feel like i am seeking sympathy .. which i am not just education.. but the list is so exhaustive.. as you are aware as you have read my blog and seen me rant about it time and time again...
My outlook on life has changed.. i am so much more aware of how people look at me no and judge me..
Sometimes i use a wheel chair.. i can walk... yes... but if i walk for any amount of time my feet hurt.. or my stomach cramps.. or i feel sick...or tired... but i have good days/hours and not so good ones... so too look at me i look "normal" .. but inside i am crying with pain..or anxiety of when or what will hit me next or will it come at once or will it just be the one part..or will it let me off for a few moments..i have given up trying to put a pattern to it all..but yes i can stand up out the wheel chair without help. and yes i can walk, and talk at the same time too... when you stare i can see... and that hurts too... kids i can handle and i expect it from.. but adults that stop and turn their heads and look down their noses...
i sprayed my mobility scooter for you as well so you have something else to look at when you stop n stare... i was thinking of putting a number plate on it.. but am not sure what to put on it yet.. answers on a postcard..;)...
When i get out of a disabled parking space i can here your eyes too you know,, and i put on a show for you and limp that little but more for you to rate me worthy enough to use the space..
I use a stick.. somedays i need it.. somedays i dont.. but i am here to entertain you and you pay me to live so i put on a show for you. The question what do you do for a living is in the top 3 questions you ask someone when you 1st meet them.. so when i say i am sick.. i can hear you...oh yeah.. so thats where my money goes then.. you look fine to me.. or lazy git...so now i have learned to try not to ask you what you do so you wont ask me.. well not straight away anyway..and when you ask now i say i do photography and volunteer.. then i say i am ill.. it softens the blow a bit and i feel a bit more accpeted ...
We all judge.. whether it be the colour of someones skin their weight, male female, tall short... its something that we all either have done or do..

Treat others how you would like to be treated

i must go now as i need to practise getting in and out of my whhel chair, walking with a limp with my walking stick and my scooter needs a re-spray... thats if my body will allow me... the one pattern i have found is it never allows me to have to much fun!

Invisable illness

Think about it....

Tuesday, 15 September 2009

Prof C Mathias

My consultant has referred me to the top Prof in the country regrading Autonomic function.. Prof C Mathias .. had a letter from the NHS today saying they are busy and the wait to see him is very long.. I.e several months... so we will see what he can do to help...