Sunday, March 31, 2013


 I am not always accepting and stoic with regard to my disease as I am sure the intelligent amongst real will have realised. I am just not a moaner, at least not always!

 In truth I spend a lot of time battling against my disease and not accepting its limitations. It is not always easy to know when it is right to push myself and when it is not pushing myself but lack of acceptance.

I swim. I love to swim. In the water I am free. I am not completely pain free but I am very mobile, I swim very well, and I just love it. I force myself to swim even when I do not feel like it. This is the good kind of tenacity because swimming is good for my body and my disease. It keeps me mobile, keeps my weight down, list my mood, and probably delays the progression of my disease.

 There are other times when my battle is pointless. It is me refusing to accept that I cannot do something and thus causing myself more grief in the process.

Today I was meant to be going to a breed club open show. I was all packed and ready to go. The two dogs I was taking were bathed. 

However, I was still awake 1 o'clock. I was awake at 3 o'clock. My gut was not good and twice I had to go to the bathroom. By the time the alarm went off at 6 AM, which was really 5 AM as far as my body was concerned as our clocks went forward last night, I had just under three hours sleep and that was fitful and not deep. I still insisted that I would attend the show. I left. Common sense ruled and I turned round and came back home and went back to bed feeling very sorry for myself.

I am very disappointed that I was unable to attend. I am particularly upset because I really wanted to support the young man whose first breed club appointment this was. I believe this man has talent for judging as is evidenced by the fact that so many of his winners at open shows have gone on to be placed in the puppy and adult groups at the same shows.

It is times like this when I know that the only sensible thing for me to do is accept  that my disease will not allow me to do something. 

Had today just been an ordinary show I don't think I would've got into such a tiz about it but I had agreed to support the judge and I felt really bad for not fulfilling that. I have to say that at the time I made the agreement I did not know that the show was three hours away from me and even when I did find out I pretended it would not matter. It would not have mattered had I had my sleeping drugs.

It still amazes me that there are people that consider me able bodied just because I am not paralysed!  Never mind what I have described above in the way of preparing to just go to a bloody dog show that I have left out the difficulty in getting dressed and the inordinate amount of time it takes! No, no able-bodied person goes through this just to appear normal! (I was about to say how many people do you know who put an overcoat on over their pyjamas to go to the supermarket because they cannot get dressed that day and then I remembered all those photographs I get sent via email about Walmart shoppers!)

Only yesterday I was talking with a friend about driving to Poland  because I would like to visit Warsaw.  I was talking as if I was perfectly able to do this. The days of me being able to drive long distances like that are over. Yet every year I still make plans to drive to cities over 1000 miles away only to  petulantly accept that I am unable to drive that far.  Oh, I can drive that far but in three days not overnight like I used to.  So it would take me three days to drive there,  I would need at least five days there the first two of which would be recovery days, and then I would need another three days at least to drive back. This is unreasonable and although I am not happy I accept that this is unreasonable and so I do not do it.

The most obvious thing that people say to me is well why don't you fly. The simple reason being I have to take far too much stuff with me including my electric wheelchair that flying is completely impractical.

Normally I take sleeping pills the night before the show.  the sleeping pills are not kept in the house, John keeps them in London. No not because he is afraid I will overdose on them. I asked him to keep them for me because it would be too easy for me to take them when I'm having difficult nights which are frequent. My dog shows are extremely important to me and without sleeping pills I would not be able to go to them. To me therefore it is imperative that I only use them for that purpose. It is too tempting to have them at my fingertips. they used to sit in my drugs draw And I only ever used them for dog shows. However, as my disease has progressed and painful disturbed nights have become much more frequent, I found I went to my drawer and got my pills even when I had no dog show the following day. I knew then that I had to not have my drugs at home.


Iris said...

You are having a really tough go at the moment. I'm hoping that, soon, your disease will settle down again and you will have some peace for a time at least.

MiniHawHaw said...

I only read some of your writing and it was as if I had been writing a good deal of it myself. I know exactly what your going through and how frustrating it can be. How angry it can make you. I get so pissed at peoples reaction to me in my chair. I also love the pool because it's the only time that I'm close to pain free. I also was abused and carry that baggage. I just can't believe how much our stories are alike. Can I ask exactly what your disability is? I may have just missed it and I hope I'm not being to nosey. I will be reading more as time allows. Not that I wish this life on anyone but it helps in a way knowing someone else feels like you do. Or that someone else understands it... really understands it. Well, guess I've gone on enough... Thank you for sharing your thoughts and I will be keeping you in mine.

matthew said...

Wow. Can I ever relate to this. For me the events I miss are my choir or band performances. I've pretty much stopped participating because I can't stand the feeling of having let the rest of the group down on those days when I just can't make my body do what I want it to. I'm glad my knitting machines don't hold me to a schedule.

TeriKnits said...

Colin~ Just as Minihawhaw said... I too felt like I could have written much of your post.

I will have to tell you how I went from being a dancer, competitive gymnast, certified ski instructor (and you won't believe this next one but) last but not least did flying trapeze and high wire among other things! Through many injuries along the way I've had to have many surgeries, but it was a negligent doctor who put me in the state I am in now.

Like you - I NEED water, be it a warm bath, floating or swimming in our pool, or sitting on a warm beach listening to the soothing sound of the waves.... being able to sit in the warm sun helps too.

It is hard to look out our window and see the tennis court there - that i'm unable to use - and I REALLY miss rollerblading.... (even at MY age!) I am still able to take short bike rides so I feel more fortunate than the situation you must endure.

I am so sorry Colin, it breaks my heart to hear of your situation. Chronic pain as well as our son's recent diagnosis have finally taken over with symptoms of clinical depression etc. I am having another surgery in a few weeks..... I don't want to have it as I am terrified. Yet all the injections have given no relief.

Colin - I want you to know how much we care about you and your situation. Thank you for opening up the conversation ... it seems to help to talk. ~T~