I am Dee and I have been on the site for a while but haven’t posted anything about me. I am 42 years old and am overweight by 76 pounds but I am very slowly losing weight. I have been in a wheelchair for just over 12 years now due to Fibromyalgia and also my hips have always been painful. My problems started when I had a fall as a three year old and hit my back and lower half on a car engine that was at the bottom of the stairs because I had problems with my eyes I couldn’t judge where things were like the stairs and doorways were always somewhere else. I would get lot delayed concussions because of the bang on the head.
By the time I was in my teens my pain levels started to get worse and in my late teens I started to have stronger pills from my doctor because otc medications didn’t touch the pain. By the time I got into my twenties my pain was controlling me because I couldn’t find a medication that helped ease the pain. It didn’t help that the job I had meant that I was on my feet for more than eight hours a day and at time seven days a week. Some day it could over 12 hours of standing. I wasn’t sleeping that well sometimes only getting a few hours before the pain got too bad to cope. Also between the age of 15 – 33 I moved nine times. In 2000 I moved 3 times and then after that until 2004 I moved another three times until I got my present home.
In 2001 I started to use a wheelchair because the pain had got so bad I couldn’t do anything if I walked into town I would spend the next five days in bed in serve pain. I found once I started to use the chair I started to get some control on the pain. In 2003 I went on a pain management program which I found useful but the whole four weeks of the program I spent it in spasm because I wasn’t allowed to use my chair. I learnt how to control the pain and now I am in charge of the pain. The unit felt that the program failed as they hadn’t got me out of my chair.
In December 2012 I went to my GP because I was feeling sleepy all the time and asked me to do an Epworth Daytime Sleepiness Scale and I scored 23/24 which is very high. He referred me to the hospital on 31st December and I heard from the hospital in late January about having a home test over two nights and this was done on 5th – 7th February and then I saw the doctor on 28th February and he told me that I did have sleep apnoea and then he referred me to another hospital to get the equipment, and I finally got my machine on 9th April and straight away I used the mask the whole night as I thought that if I have use this for the rest of my life then I might as well get use to it NOW.
I have had many different masks since then as the first mask was making my eyes sore as I already have very dry eyes. Currently I am using two different masks depending on what is going on with the leaks. I am having problems where I am getting very tired again and sometimes I am sleeping more than 12 hours a day. When I downloaded the data for 8th December it said that I got up at 1040 but I was in church from 1020 so that isn't right. Maybe it been doing weird things with the hours that I am sleep as one day it said that I got up 1245 which wont happen as my dog would have wanted to go out by then.
I am many different medications to control my pain levels so this means that I take more than 30 a day just to keep me going.
My dog is called Jai and he is a beautiful long haired German Shepherd dog and he will be eight in January. He is my rock as he has helped me with my depression as I had to think of him as he can’t do it for himself.
Dee