On Monday last week my occupational therapist was here to discuss various things, was a shocker to discover what usually took me a moment to get from our bedroom to the front room in the electric wheelchair took 5 minutes.
Shocked us all, was so relieved when it went ok for the rest of the week that is until yesterday when it went even worse than Monday.
The next lot of burocratic red tape is starting to happen now, as my right arm is no longer functioning well so I need an alternative steering system installed at the back of the wheelchair so Richie can steer.
Then I can get out because since Monday my steering is so bad it is almost gone, somehow
will have to be able to steer out of the apartment.
And in and out of the narrow lift and into the mobility bus this coming Thursday for the hospital appointment, then 17 November to go to the Drive b y Truckers gig in Paradiso and 26 November for the operation.
Shall take a diazepam later and see if it relaxes my muscles and allows me to steer better, hope it does as this situation is getting to me now and I do not want it to fuck my head.
Expect to have the usual long wait of two months + before anything happens and this is after many appointments where they decide what I need.
So could be January before I have steering at back of wheelchair which I really need now, otherwise I will be stuck indoors which is not a nice prospect at all.
Really hate how long the burocracy takes here to get anything done, wish I was well off or would win the lottery so we could buy what I need and not have to wait months every time to get an appliance.
There should be a fast track system for people with progressive diseases, who need that because by the time something has been through the usual procedure it is three months later.
The procedure is usually two to three meetings, then a decision then a meeting with the supplier and then the application goes to the council who have to say ok first and that always takes two months and only then can it be ordered.
A cumbersome system which is not geared up for the recipients of help and no good for people with progressive diseases whose condition, like mine does not remain static.