Monday, 22 February 2010


I had a breakdown in the bathroom early last week. It took three women to get me out of there. It all started when I was transferring from the toilet back to the wheelchair. The screen on the wheelchair controller flashed up a message informing me that there was a 'brake error 1301'. The wheelchair refused to move, ceasing to perform its primary function and becoming simply a chair. A chair located in the bathroom. The two carers and Polly manhandled the chair out of bathroom and into the living room by disengaging the motor and heaving and pushing the ungainly machine using brute force. Polly referred to the manual and looked up 'brake error 1301'. The manual helpfully told her that there was a problem with the brakes. Armed with this inciteful information Polly poked and pulled various wires and connections to no effect. Eventually she removed a panel on the back of the chair and prodded connectors hopefully. Suddenly the chair sprang back into life. The carers stood in open-mouthed appreciation of her technical abilities. Polly Deal, the 4th emergency service.

I'm having problems writing at the moment which is why these posts are a bit short and a bit spaced out. Normal service will be resumed soon, I hope. Thanks for your patience.

Monday, 15 February 2010

Still Bumped

In case you were wondering, I'm not in the Royal Bromton Hospital. I was bumped again, presumably by a very sick person whose need was deemed greater than mine. Because this week is half-term and the boys are off school I declined the offer to wait in all week on the off-chance that a bed would become available. Apparently we are going to try again in the first week of March, by which time I will be considered a priority.

Kolapo, my main carer is off work at the moment with an injured back. This means I'm seeing a lot more of other carers who are usually more irregular. Kolapo, who works seven days a week for 50 weeks of the year, usually takes the lead when it comes to my home-care, and so, in his absence, I am left to the tender ministrations of carers who have less experience when it comes to dealing with me. Fortunately, first among them is Nina who is supremely competent and reassuringly sensible. Nina is supported by Maria who is very sweet but reminds me a bit of Dory from the film Finding Nemo. However many times she comes, and she has been here many many times, it is always as if it is her first ever visit. The operation of my wheelchair, my BiPap and even my electric toothbrush remain a complete mystery to her and she always approaches each encounter with them with what can best be described as enthusiastic confusion. She mutters a constant stream of Spanish while she presses buttons in random combinations until something happens. She is an extremely gentle soul, and so being washed by her is akin to being mugged by a butterfly. Another irregular regular carer is Collette who keeps African time, prays over me and is trying to teach me French. Collette is great fun, mad as a box of frogs, but great fun. I am very fond of all my carers and appreciate each of their idiosyncrasies. My life would be much harder and a lot less interesting with out them.

Polly has been horribly ill for the last few days and had to retire to bed for more than 48 hours. She is much recovered now but still a little wan. Sam was terribly sympathetic but was worried about who was going to cook his tea. He looked at me with deep suspicion before handing me the phone and suggesting Pizza Hut.

My hand is hurting so I'll have to stop writing now. Until next time...

Tuesday, 9 February 2010

In Limbo

Theoretically I'm off to the Brompton tomorrow but I won't hold my breath (they get really mad if you do that). I'll keep you informed of my progress or lack of it. Meanwhile I'm in a kind of limbo. Ho hum.