Monday, April 09, 2012


Last night I went out like a light and didn't wake up until 10am! That has been unheard of for many years. I was not in bed until 2:30am because I was just sore after the show and needed to wait until I could safely take more drugs. Even so, 7.5 hrs of unbroken sleep is astonishing. When I awoke there was an alarm going off. I was up and looking for it before I was fully awake and before my body was working so I fell as I got off the stairs. John was there so it was okay. The alarm turned out to be our UPS (uninterruptible poer supply). For some reason it was a power overload. It had the same plugs in it as it has had for years so not sure why it went off. I removed an unnecessary plug and it shut up.

The dogs, except for MG and Chase, go to their holiday home today as the builders arrive at 8am tomorrow. I will need to be up at 6:30am daily now. I used to get up at 6 daily until the latter of last year when my disease dictated otherwise. I love the very early morning.

The builders are going to do more for us than just build the conservatory. They are going to concrete over the gravel strip. We had that put in for free by dog people we knew but it is totally unsuitable for dogs! It is very difficult to pick up dog poo from pls dogs like to chew the stones!

We will also have the back half of the garden completely re lawned getting rid of the gravel borers there too.

It has turned out that weare doing more than originally planned. I, I mean we, decided we might as well have all areas of our house and garden as we would like it.

I have to say that the new flooring and bathroom and stairlift, all because of me and my disabilities, is an expense that bothers me. I k ow it is for the best andi accept that. I think the Govt and those in the general public, have no idea just how much more expensive daily life is for people with disabilities.

For example, I buy ready prepared vegetables. The most expensive way to buy them. Why? Using a knife is often not possible and even when my hands do work it s too dangerous. I have cut myself badly a few times until I faced the fact I cant use a knife safely.

Underwear: this costs me more. I cannot just wear a pair of pants. I need lightweight long underwear, top and bottom, even in summer.

Travelling: I need to use the car. The cost of fuel is outrageous. Going on holiday is always by car because of what I need to take and the fact that Daniel, the wheelchair weighs 200lbs. Have to take my own pillow to keep my neck supported correctly in bed. I have to take so much an airplane trip is out of the question.

I point this out not out of self pity, but in an attempt to maybe educate others about stuff they don't understand. Not even I understood how expensive I am until I thought about it. I am very lucky though because I am in the position to pay. However, many, if not most, disabled do not have my advantages.

Just bear all this in mind when it appears that disability benefits are too much of a burden or that is handed out too easily. One it isn't easy at all to get it, and it is nowhere near enough! Disgracefully, a person who has to rely on disability solely, has a very poor standard of living.


Iris said...

I don't think most people DO understand the costs, both obvious and hidden, that the disabled shoulder. I am, also, appalled at the cost of fuel most places. People over here in the U.S. really need to realize how lucky we are to have gasoline at less than $5 a gallon, when it is closing on $10 a gallon in many parts of the world. We'll get there, but I'm betting we'll still be paying less than many.

Best of wishes to you, Colin.

carole k said...

Colin, You will never realize what yu do for people who for one desease or another fall into the why me groupd instead of thanking the good lord that it could be even worse. I ws sorry to hear that John has COPD as I too have emphysema and have to wander around the house and outside with an air "leash" hanging over my ears and stuffing up my nose. I have begun thanking the Lord for what I DO have and it's such an inspiration to read your thoughts on life in general. I wish you a very long life and who knows they might find something new to help people with our problems. I have an older Shi Tzu and since my husband passed, she is all I have. It would kill me to have to lose her so I just purchased a toy Pom party color mostly white from a breeder in Ky. The oregon breeders are a tight groups and I'm sure are price fixing and even their pet quality pups start at over a thousand dollars. My little fellow will be flying to Portland Oregon this next Saturday and I'm like a kid at christmas counting the days. I'm still without a cute name. the breeder says he'll probably never go beyond 7 pounds and that's so had to imagine. Can you imagine my family's reaction when they found out I was flying a pup from Ky to Oregon.... Oh well,, They think I've gone round the bend before. Poor things, they never inherited my spirit . Life can be so silly and fun if you just look for it and embrace it. Thanks you for all that Colin, Carole in Oregon