If there were one thing that I really find upsetting about my condition, t is my inability to concentrate. I am unable to sit and watch films in one go. If I do not take medication then pain prevents me from being able to concentrate and if I do take medication, the medication prevents me from concentration!
Our nearest cinemas are over 20 miles away. We rarely go and in fact we probably have given up going. If I take enough medication, I can basically stop fidgeting and because there are no other distractions. I am able to concentrate longer. However, I usually then find I have a battle to stay awake!
I do watch a lot of DVDs but they are series and they are easy to watch because the episodes are usually under 50 min and I can enjoy them whilst I am knitting all messing about on the computer without really missing anything important.
What I miss is being transported if you know what I mean. For an hour and a half or three hours, I used to be so absorbed in the film, if it was good. At the end of it, it was like waking up. I am no longer able to get that absorbed.
I am still able to read and I do so every night but I do not read for very long before I fall asleep. So whereas I might have read two or three books a week, it now takes me weeks to finish one book. Written down that sounds rather poor.
I do all of my reading now on my Kindle and it is so much easier for me to hold. It is very light. No, it is not like a real book, which I love to see on the shelves but I no longer buy them. This does not apply to my knitting books which are usually big format and they can just sit on my lap because I do not read them in bed.
Most of my difficulties have been resolved or made better by making adaptations such as using the Kindle to read. However, I have yet to come up with anything that enables me to concentrate long enough to watch a film. I had not realised until this last couple of days when I have watched Harry Potter and the Deftly Hallows. It took three sessions for me to complete seeing the film. Because of this I do not get emotionally involved. I just realise that this is what it is that I miss and completely spoils my enjoyment. I don't know if there is a good combination of drugs that would enable me to concentrate.
The government here are trying to get as many people off disability as they can and I am seriously worried that they are going to come after me. I could not even work on a till in Tesco. I would lose track of what I am doing all I would get very confused because my brain just gives up by that I mean I just goes blank. Once again I would have exactly the same problems as I have in the cinema if I don't take painkillers. I just wouldn't be able to sit and work the till for more than a few minutes. If I do then I just experienced the same inability to function properly.
I managed dog shows by careful planning and revision of my actions before the show and after the show. I also take many more drugs. The night before a show I am usually in bed by six or 7 PM because I am up at 2 AM usually leaving around 4am. I need those two hours for my body to function well enough for me to get dressed. When I get to the show. I park my staff and I stayed sitting down until it is time for me to go in the ring and I only get up when I need to have a pee. My time in the ring is short and painful but up until now I have always managed those few minutes. I have fallen a few times but fortunately other people have seen that I was about to topple and prevented me from doing so.
I think I have a very good attitude and I deal with my challenges in a positive way. I enjoy my life and I do not let my diseases get in the way. Well of course that is not entirely true. Of course my disease gets in the way. What I mean is I make the best of it.
If I were very rich and did not value my independence so highly I would pay somebody to do the following: help me get out of bed every morning, help me to wash and helped me to dress.I would also have them cook my meals for me. All of these things I find very difficult to do and I do not do them every day other than get out of bed. Whereas I used to insist that I was always dressed properly when going out I have had to give that up. Hence I do not wear traditional pyjamas. Instead I wear what is called leisurewear. I make sure that they are fun and interesting and colourful. With the addition of a hat and something around my neck I don't feel like a cripple in his pyjamas going to the supermarket!
I use only the microwave and a steamer for cooking. I cannot hold anything heavy as it is too dangerous. Even with these precautions I still drop stuff. Like those little microwaveable meals that Tesco do. Quite often I will go to get it out of the oven and drop it all over the floor! So yes somebody to cook for me would be very good.
Thankfully I am able to deal with the pain side my disease. Through the use of drugs and my ability to disassociate I'm mostly can keep it in the background. Not all of the time. This day last week I was almost in tears after two weeks of nagging pain that just would not go away no matter how many pills I took. It was quite severe as this is the pain caused when my diaphragm cramps and painkillers do not seem to touch it. Then I awoke on Friday and I was back to feeling like there was almost nothing wrong with me.
My biggest frustration as I think I've probably made very clear is being prevented from doing what I want to do. I do not mind be helped and I do not have any difficulty asking for help. I am not proud in that sense although perhaps I was because asking for help is a new thing with me.
anyway things like not being able to make a machine knitted sweater in one day anymore.not being able to deal with things that I used to find just so easy. For example having visitors. I love my friends and I really enjoy seeing them but it is exhausting for me and I couldn't possibly do it everyday. And I have to say that company that lasts for more than an hour drains me.
And now I must finish this post.