This is one of those stories you absolutely hate telling because you are so tired of even thinking about it, never mind relating it one more time! But, I feel it’s a story that needs telling because of the simple reason that, it was a request for something so simple, that became so impossibly complicated. UNBELIEVABLY so! All I wanted was a toilet downstairs but you would think I was asking for a pot of gold, or a massive building extension by the time the surveyors arrived. When you are disabled and need this sort of help for this sort of thing, well pleazzzzzzzzzz we do need some dignity. You don’t want to feel as if you are begging for something as basic as this, well do you? Well this is how the story goes …………………
In the section, living with COPD (see Making Life Easier With COPD ), I explain how you can make your life easier with this illness, once you have come to terms with the diagnosis. I decided, that there was no point worrying about whether I will have enough breath to get up the stairs fast enough to get to the loo. I’d gone through this for almost 3 years, 18 months ago I decided to stop messing about and put in a request for a downstairs loo from the accessible homes team, through Kirklees Metropolitan Council. But this has been easier said than done, what a carry on I have had trying to obtain this toilet it’s been like getting blood out of a stone!
Firstly the nurse who works for the team came out on a house visit, exclaimed how much weight I had put on (because of those steroids) and how much worse I was than the last time she saw me, which was great, of her, thanks a bunch I thought and then told me, I would have to have a stair lift!
This is when knowledge about this illness really shows people up! Going up and down the stairs is great exercise and something we have to keep doing in order to stop the advancement of this disease. Being able to do it quick enough is another story. I explained this to her, which caused me a certain amount of embarrassment as you can imagine. However, unbelievably, it fell on deaf ears and my request was refused AT FIRST! I appealed the decision and after countless embarrassing emails in which I had to yet again explain my personal needs over and over and another visit by a much nicer nurse and another visit from the same nice nurse and council planner, I was granted one of these holy of holy’s, a ‘downstairs loo!’ Have I got it yet NO!!! And another winter lies ahead. Now winter is over and I managed ‘just’ without one, but the summer is on its way now and YES, I still haven’t got mine fitted!
For more than a year we have been at a stalemate as to where to place this toilet and when that was solved it was an argument about where to put the door! I am so fed up of the whole thing now and my local member of parliament is trying to help with the situation. Firstly, the council wanted to place the toilet in my living room! Unbelievable, I dont know anyone who has a downstairs toilet in their living room. Then, they decided that the old pantry in the property was probably the best place as it already has a water supply and is directly under the upstairs toilet and right next to the sewage pipe. Wow, what a decision, this is so hard! BUT wait for it, the original doorway cannot be used that is next to the back door in a vestibule, because they want to put a new door next to my cooker in the kitchen!
Great, we will now have four doors in a small 10ft by 10ft kitchen! All more money and inconvenience. So, I am now in talks with the chief surveyor in the department trying to see if they can use the original doorway in the vestibule to save money and space. It does seem the most practical alternative but the practical alternative does not ever seem to be the right thing when dealing with the council.
The talks are now over and I have been forced to agree to the toilet door going next to the cooker so, where am I going to put my pans when I take them off the cooker. It’s hard enough as it is when you can only stand for a minute and a half without getting out of breath (I am working on that one tho). So I am getting my toilet after all but have had to make this compromise! I am going to have a lot of trouble fitting things in but I will get on to Kirklees Housing and get them to look at my kitchen they might be able to come up with some ideas as it will no longer satisfy the ‘The Decent Home Standards’, the kitchen will no longer have adequate space and layout.
And here is a nice little son to remind you to ask for help when you feel as if you are in as hole, he always helps me!