Always A Lot Of Waiting.

 

Alice Rahon.

http://en.wikipedia.org/wiki/Alice_Rahon

This afternoon I had a good appointment with Edith, my mobility advisor from the council and Percy, from Welzorg.

It was agreed we will get better steering for Richie, a two handed control and they will get chin steering set up on my wheelchair so I can also steer.

Hopefully we can get wrist support for Richie in the meantime and                                        even better if this could all be organised quickly.

I doubt this will happen, it never fails to amaze me how slow everything gets done, no wonder, as there’s just too much unnecsesary burocracy.

Amazing that I have to be so active and always need to spend so much time and energy fighting for what i need, good job that I can do that.

I have an incurable progressive disease, so the last thing I need is to be spending so much of my precious time and energy fighting for what I need.

Seems strange that I have Primary Progressive Multiple Sclerosis, which is getting progressively worse very quickly, yet I still have to wait for everything.

The people we deal with know that I have MS, they can see the effects of the disease, they can also see how fast the disease has progressed.

Shame that they can’t alter their cumbersome procedures, and I, like everyone else in this situation, still have to be patient and wait for everything.