I am currently feeling angry and frustrated and vulnerable and uncomfortable all at the same time and I don't like it.
Let me explain.
I live in social housing, a Housing Association converted Edwardian terrace property. My Housing Association is currently doing planned maintenance on our estate where all the proerties are getting new kitchens and bathrooms fitted.
Lovely yes?
Well yes up to a point.
I am a severely disabled woman who s restricted to lying in a hospital bed in my front room most of the time. I am totally paralysed due to Multiple Sclerosis from armpit level downwards. Above that level things work pretty well, below that, nothing. Nader. Sweet FA.
This means that all the work that needs doing in my house has to be done round me. Again, technically not much of a problem. But my two wonderful, adult children aren't at home much during the day one works full time and the other is a student so is at college several days every week. And I am on my own. I have carers who come in three times every day to feed me and attend to my personal care needs but they are only around between 9 and 9.45am, from 11.30am until 12 noon and then again from 5.45pm until 6.30pm but that's it.
Normally this is completely alright - me, my TV, the DVD machine, my computer, Wifi and a little mini fridge with snacks in on our lonesome but, at the moment, it's all wrong. I currently have a selection of workmen and women, kitchen fitters, plumbers and electricians traipsing in and out of my property all day, with hardly a by-your-leave and wandering up and downstairs at will. The only reason I know someone is there is if I happen to hear the front door opening, if they knock on the living room door to tell me they are in the house or if I hear footsteps in the bedroom above me. The whole thing is making me extremely uneasy and paranoid.
The worst part so far was yesterday, day one of what I am told will be a three or four week job, when, after the workmen had told me they were leaving having finished for the day, one of my carers appeared to ask if I knew that my front door had been left open. The workmen had gone and had not shut or locked it behind them. Not only that, when the plumbers had been to put in a temporary sink after everything else in the kitchen had been stripped out, they had failed to turn the water back on properly so I had no hot water at all. Nightmare. Today I have had no workmen at all but the plumber has returned, after I rang the Housing Association, and, hopefully, hot water will be restored later on this afternoon. I hope so, this morning's tepid (using water from the kettle mixed with an excess of cold water so I didn't get scalded) bed-bath was not funny.
I get a weekend off from the chaos but next week, I am reliably informed, will commence with a day when the electricity is turned off all day. I have pointed out that I need some power for my hospital bed and the anti-pressure mattress that I have to prevent a recurrence of pressure sores so they are going to let me have one double power socket and a collection of extension leads to power everything I need.
I get the impression that the Housing Association, the contractor and the workforce have never dealt with a property where a severely disabled person who is restricted to their bed lives before. They really don't seem to know what to do. My older daughter and I are now writing an information sheet on how to work with disabled people which we will be sending them when the work is finished. We have both done a certain amount of disability equality and LGBT equality training before so this is not unfamiliar territory for either of us. Thinking about it, I will also put the factsheet onto my blogsite too in case other people or organisations would also find something like this to be a useful resource. I would hope so anyway.
Fingers crossed that things on the workmen and paranoia front improve dramatically next week or my blogs are likely to become more and more desperate. In the meantime, the crazy, unhappy bunny with a haunted look and straws in their hair in South East London is me. Maybe, like Edmund Blackadder, I need to stick two pencils up my nose and shriek 'Wibble' at the top of my voice until I feel better.