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Dillydaf's story

I don't quite know where to start, but I suppose the beginning will do ... but be warned, some parts are gory ....!

I was born 45 years ago with Spina Bifida, which was very mild and didn't really make itself "known" until I developed a weakness in my right leg at age 7 - turned out my Achilles tendon (at the back of the calf) was paralysed and no longer growing. Two operations at age 9 and 10 to lengthen the Achilles tendon, and remove some bent bone in my foot, sorted out the problem and I was all set to live a normal life.

Although I grew up in second degree squalor, my own room was spick and span to the point of OCD ... I couldn't go to sleep if the rug wasn't exactly parallel to the bed LOL! It was my little oasis in all the mess.

At age 20 I married and moved 80 miles away from my family. My husband's career took us all over the UK and I developed agoraphobia (25 years later I'm still battling with this). I haven't seen much of my family since, although I speak to my Mum daily on the phone. I had no problem with keeping our succession of homes clean and tidy, until ....

In 1990 my daughter was born, and shortly after I was diagnosed diabetic AND my Spina Bifida turned "aggressive". I very gradually started to lose the use of both my legs, and eventually was moving around by dragging myself from one item of furniture to another. I was too proud to go into a wheelchair. As you can imagine, with a young child, me in this state and hubby working / commuting all the hours God sends and sleeping the rest of the time (he helped when he could), things deteriorated rapidly. By 2000 we were living in second degree squalor, my marriage was on the rocks and I was living upstairs, hubby downstairs, and my daughter kinda commuting between us. I had no idea what was going on housework-wise downstairs .... until Sept 2001 when we decided to separate, he moved out, I "moved" downstairs and was met by a scene of utter devastation. Third degree squalor.

I set about doing what I could to clear up, but (on Sept 11th 2001!) I fell and broke my ankle, was carted off to hospital in a wheelchair and basically told to stay in it even after the ankle healed, because my walking was dangerously bad. For the next few months I ticked along, getting from day to day but unable to do anything about our living conditions. We had two cats, and uncleaned litter trays .... kitty pee and poo behind all the furniture. I had no access to upstairs, and still don't know to this day what it was like up there. Then things took a turn for the worse ....

The Spina Bifida moved on one step further, and I completely lost control of my bladder and bowels . I could never make it to the loo in time and eventually gave up trying. At rock bottom, I spent FIVE MONTHS sitting in my wheelchair all day, sleeping in it all night, and "letting go" when the inevitable happened. My poor daughter cleaned up as best she could. I stayed in the same spot so as not to wreck too much of the house. Am I the first to claim FIFTH degree squalor?

Then I noticed something unpleasant was happening .... lots of bleeding and oozing where I sat. So I called in the District Nurse to check out what was happening to me (by this time my bottom was completely numb). She was the first person I had let into my house for years. She took one look, gasped and called an ambulance. I had a fifth degree pressure sore on my buttocks, which had rotted away to the bone. Strange as it may seem, this was the start of the upturn.

I was told I was pretty close to death .... my nutrition was bad, my diabetes was out of control .... and did I mention the depression and suicidal thoughts?

I spent three months in hospital, and it was the best thing that ever happened to me. They put me on insulin and got my blood sugars down, and operated to give me both a colostomy (poo bag) and urostomy (pee bag), both of which I'll have for the rest of my life. This gave the pressure sore a chance to heal, which it did ... gradually.

Upon leaving hospital the local Housing Association gave me a brand new, purpose built disabled bungalow. I gathered up just the bare minimum from "The Hole" that I needed, because by now all the furniture was wrecked I went deep into debt to buy all new furniture (safe in the knowledge I could pay it off when the house was sold) and moved in.

Some of you may hate me for this ... but I was given a free ticket out of squalor, and a brand new life handed to me on a plate. I was soooo blessed, and swore I'd never get into that kind of state again. I moved in in January of 2004.

Ex-hubby cleared the house - basically everything was taken to the dump, including things I've since realised I forgot to "rescue" , and the house was sold. I paid off all my debts and life was gooood.

Last autumn I happened upon Kimmy's story and was filled with awe. I progressed to reading this board and was inspired enough to just about keep on top of things at home. However ....

For some reason I'm very, very tired. I have regular check-ups and so on, and they can't find anything wrong .... but I'm currently sleeping up to 15 hours per day! If I don't lie down every few hours I fall asleep in my wheelchair - and that's dangerous because of what happened before. I took a long, hard look around me today, and what did I see? First degree squalor - except my daughter's bedroom which is second degree. EEEEEK!

A word about my daughter. She doesn't help much about the house, and I'm too weak to make her. I have SO MUCH guilt about what she's been though the past few years and I'm going overboard to make it up to her. She's 15 and, I'm afraid, quite spoilt. All through the bad times I kept telling her "it'll get better one day", and now it has I can't bear to cloud her sunny world. She gets everything she asks for, and I clean up as best I can. I pay her £10 every two weeks to clean the floors and bathroom (things I can't do myself) and she doesn't do it properly. But I can't bear not to pay her because she relies on the money to supplement her pocket money. I'm an idiot, aren't I?

So I've come back here where I know people will understand, for help and support in "stopping the rot" before it sets in. Believe it or not, this is a "bare bones" version .... if anyone has any questions I'll be glad to fill in any gaps.

Dillydaf [Today, I start new]