Tuesday, 21 February 2012


I am tired of all the hospital trips to consultants that treat me like a patient without issues excepting the ones that they deal with. They have no idea what to do with me. I cancelled another appointment to have a video done of my bladder.. didn't see what it would do to make it better since it is paralysed anyway with this condition I have. I went to a meeting this morning with fellow sufferers, and all of them had the condition because the pains in their backs and legs were not taken seriously by the doctors and so developed into this syndrome, whereas mine happened because the Doctors did operate in time, but it went disastrously wrong.. We sit from 11 am until almost 2.30, with a few biscuits to see off hunger, and talk about the Charity that is being formed to get the message out about this condition.. the fund raising schemes, the raffle tickets, the balls to be held and music nights, all to try and get funding up and running so the publicity machine can grind into action.. Meeting others who have been living with it for almost 15 years has not been inspiring, rather, full out depressing, and so I am not sure that I want to meet them all again, I am managing quite well on my own and don't see any more meetings to be any further use.  I know that I am tired, with everything today, and that it is part of my feeling a bit blue tonight... but I have to remove myself from situations where I don't feel positive as its the positiveness in me that manages to keep me going.

On a brighter note, I am starting the discipline of a diet tomorrow, and have to weigh myself first thing in the morning. I am going to do it with another friend and we are only going to weigh ourselves once a week and not each day as I do usually.. we are going to try a non wheat diet.. and see how that helps us lose... if we are good, by May I should be almost slim again ha ha..

Wheat free looks quite hard, but we are leaving the non dairy bit until later if we are losing too slowly** My friend has done it before but combined with the dairy part, so we shall see.. as it is, I don't mind going without bread for a while, but there is so much on shelves that has wheat in it too.. even instant coffee.. So tomorrow is all part of the plan to be disciplined as I promised at the start of the year.. Hope it doesn't end up making me even more tired !!!!!!!

1 comment:

  1. Sorry to hear it was a hard day for you. If you're managing well, then that's probably all you can do. Have you ever Google (USA) your condition?

    Good luck with the diet. Those things always seem to work better with others to prop you up when you get tired of it. I'll send you some tips I've found out about, in a regular email.

    Feel better.