Tuesday, December 04, 2012

GETTING THERE

It is times like this that I find it the most difficult to write. Times when I find it difficult to be up let alone writing to my in-your-face journal.

 Before I lose the thought  the only think I can thing of for feeling  so low is the fact that I am feeling so low.  I feel ashamed of it and I just cannot think of a good reason why I would be feeling like this.

Yes, this time of year is never an enjoyable one but it stopped being  an awful one years ago.  I took to celebrating my birthday and ignoring Christmas. 

 And nothing tragic has happened.

Okay some more thoughts have come into my mind. In August and then again in November I had to go through two  all those awful government disability assessment forms. Not only are these very worrying they are also humiliating. What they really do though is make one concentrate on one's self, on one's body. I absolutely hate doing that. Just as with yesterday's hospital appointment, where I became aware of my body because of all the questions and tests. If I talk about it in anything other than a general way I start to feel it.

Yes, we have had the major house alteration this year and it is still not finished. It has taken very much longer than I expected although I was warned by friends that these things never go to time. I didn't realise how much I would hate having people in my house all day long. Nor how much I would hate and find unsettling the fact that everything is so different.  when we made the decision to do all this it was either do this all move and as when we bought this house in 1999, I was 40 and it was my 34th home, I definitely did not want to move. I did feel panicky about that but very quickly realised it was only because I was basically making the decision that this was going to be my last home. As it has turned out, other than a few traumatic moves when I was a child, these house alterations have been far more stressful than I would ever have believed.

I was interrupted by a phone call from John and we were talking about what I'm writing about here and he says that he thinks that the government forms are much more stressful than I give them credit for. He says he finds it very very hard just being with me going through them.

And then of course was our wedding. Yes I can see why people would say that is stressful but it was the happiest day of my life. I still can't quite believe that it's happened.

I made up my first champion, the first-generation Tantra's Plenty O'Toole Isa Kutani  and also gained the studbook number for my 4th generation Tantra's Mary Grace.  Dreams coming true.

 Now I feel rather stuck as to what say. Maybe I will just have to trust that what others are saying is in fact correct that despite nearly all of what has happened this year has been very good it has also been very stressful hence where I am right now. Even as I write it it just seems so ridiculous that one can end up feeling so desperate and tearful all the time.

I am doing all that I should be doing with regard to the dogs; keeping them clean groomed fed etc but have felt no joy in it no pride nor passion. Even my knitting IM doing that more like a chore. I'd really rather just go back to sleep except that I can't sleep very well right now.

Although I was rather surprised at what came up at dinner on Sunday regarding my father and my disease I now think quite differently about it especially when I know that it is certainly by no means definite and that people without my background have the same diseases!

All sit. Well actually that is not what I spoke  into my voice to type program but I shall leave you to guess what I did say.

My whole attitude to my health since 2004 when I was first told was that I was not going to give in to it and I was going to live my life as I wanted to. In translation I can see that what this actually meant was I was going to be the real man my father taught me to be and overcome it. And here I am eight years later with a disease that is far from cured and in fact has  progressed a lot. Perhaps what has kept me going this last eight years was the battle against my body and just trying to find the right combination that would enable me to feel perfectly normal and well all of the time despite having my problems which on the face of it I knew were not curable.

Old tapes are never erased from our minds but they can be quieted. The comment above about being a real man of course is absolute nonsense and he was far from being a real adult. However, when one has been taught me things from a very early age they do tend to stick and become quite bothersome later on.

It is true I can now see that I have been fighting my disease in not quite the right way. Yes it at least has got me through the last eight years. But now I need help. And I guess this is what I have more or less always  refused.

I was asked yesterday at the hospital what did I think that they could do for me. It took me a long time to answer and we got talking about other things while this was cogitating. I finally said that I needed help to sort out my day-to-day living within my means routine. I am sick of going full charge only to crash. In other words I no longer know how to take care of myself. I know it is very important that I keep up the swimming and the dogs.  I need to find a way of pacing myself and understanding what that means. I am not even sure if I'm explaining myself to you clearly enough but  the hospital understood. Just as we needed an accountant to sort out our finances, I need the medical help to sort out my daily living because I have run  into a brick wall. I guess in the end I needed more help than I was willing to let on or even to think about. I am so terrified of becoming dependent that I spent the last eight years running away from my disease thinking that I was being terribly brave soldier and just dealing with it. And now I am not knocking myself because it has taken enormous effort and courage to do what I have done but it was all done with that thought in the back of my mind that I could cure myself.  while not cure myself because I knew that wasn't possible but I could not just slow down the progression but I could stop it altogether. But that is what I mean. Yet the comparison between me in 2004 and me now it is very obvious that I did not succeed in slowing down the progression well at least not in my mind although my doctor says that everything I have done has in fact slowed it. I hate to think where I would be if I hadn't gone into overcharge then!

 Facing facts, I can only slow the progression I cannot stop it and I need help now to live a different way because I can no longer do it for myself because my way is not working.

Grrr.
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