Saturday, December 29, 2012


This is just the sort of hatred and ignorance disabled people have to deal with: 

 "How do they justify, getting up in the early hours, preparing their dogs the same day or the day before, and if it is a coated breed bathing and grooming for hours on end, bending over baths, twisting and turning, using back muscles, shoulder muscles, leg muscles etc etc, bending down to poop scope, spinal cords in operation here, plus supporting muscles. The exercise that is needed for a dog to be at its prime, walking or running it according to the breed, week in week out. More than a normal office worker would use. The energy to get up in the early hours, drive for miles , unload a car, load a trolley, pull a loaded trolley, sometimes over the worst terrain, push the bonds of energy and strength, not to mention a day travelling and showing at a show...... Then they run around the ring..............bend over almost to touch their toes...........and say HEY...............I AM DISABLED!! Sorry but if you can do all this you are not DISABLED or IMMOBILE!!! Does not all this sound more like the commitment of an athlete.............. Oh I forgot they are on medication. would not the same medication be able to help them work!!!! Take a look in a hospital word...........see the true disabled and immobile......" 

 Some people seem to think only those confined to bed are disabled. 

 What people see at dog shows is me on huge amounts of drugs and huge determination. Am i supposed to cry as I walk? Am i supposed to show you all just how bad it is? Then you'd hate me just the same for being miserable and an attention seeker. 

 I have to take drugs to stop the chance of a bm so that I don't need to poo at a dog show because then I'd need help to dress again. I use an electric trolley pusher now and often had people helping me. The after a dog show, I am in agony and totally exhausted regardless of the drugs. My dogs keep me going and John does a lot for me..such as getting em dressed and undressed for the show. Am i supposed to attend the show in m y pj's like I do when I go to the pool for physio? 

It takes two days to recover from a show. I have to buy my food , like veg, already prepared because I cannot safely handle knives and I use the microwave because I can't handle pots because dropping pans of boiling water is not good and that is if I could even get them on the hob. It is more expensive for me to eat. 

 Because I can't create my own heat well enough, I have to have heat 24/7 Sept to April and sometimes beyond. I shower and dress over a wet body, my pj's are all slip ons, because I can't dry myself. My dogs are bathed downstairs in the kitchen sink. John helps me by lifting them in and out. When he can't I use grit! 

 On a day to day level, I pee in a bucket because I cannot go up and downstairs that often. i have to wear pads because I wet myself because I can't feel the stream. 

 Prior to the specialised bed, I had to roll out and crash onto the floor and then use the radiator to haul myself up. 

 As it is I spend most of my time alone and indoors. Dog shows are a reason to fight, a reason to live. without them I'd have nothing. How come I spend the time on here? It helps me feel less lonely. Simple. Although I like my own company and find being with people for more than a hour or so exhausting, I still need communication. Plus there are the many emails I get from hurting people that i must answer. 

 It seems people like me need to saty at home and not have a life. We are not supposed to show grit and determination. We are only punished for it. 

 I do not want your pity. I point these things out because it is clear there is much ignorance about disability and what it means. there is also much resentment and hatred toward people like me. I am still trembling with hurt and anger over these words sent to me by an acquaintance. the rest of the letter suggested that instead of moaning about the hatred shown us I should be helping other abuse survivors. Huh? Like I told them, excuse me, I spend time every day listening to and reply to other survivors. I have raised money. I do all I can. 

 It seems that because I refuse to lay down and cry, I get kicked for it. i think people like this think we should just disappear. I am still reeling from this email. it seems my status about people who resent us offended them and then they wrote this in their defence and saying I was unfair. 

One, they are exactly like that and two I had no idea they thought this and 3 I was not addressing them. 

I did not deserve this. I am glad though I found out before we became close. There was more resentment and hatred in the message but no need to go there. I am not even sure what the rest of it was about. 

 Why should I have to justify myself? Why should I have to tell anyone the little I have above? that isn't the whole story either, but I am not prepared to go into more detail about my diseases and its affects upon me. 

I choose to do the best I can. I could have chosen to give up and be more of drain on the public purse. Oh and John has paid his full whack of tax all of his wife and he too has never claimed any sort of benefit. And I am almost certain he has paid more tax than the person who wrote this to me. 

 Strangers writing like that to me I can dismiss or just feel annoyed and let it go. to have someone I have shown nothing but good will to is really very hurtful and I am royally pisssed off that I let it hurt me. Oh, i can easily think they are having a hard time and chose to lash out at me but this type of thing cannot be taken back. 

 I now wonder how many of my friends think the same way? People who know me only have to look at my face to know how I am. Why it is easier to say we are lying? Why is it easier to mock us? To disaprage us? What sort of person wants to? 

It really is no different to being racist. Just because someone happens to see one of 0.8% on disability who are not qualified for it, tehy classify all of us the same-spongers. This is just like seeing a black person shoplifting and from then on deciding all black people steal. What really really hurts though is that the enormous effort I have to put into having a life instead of being applauded, as the Right are alwauys quick to point out, the admire people who fight for it, yet not me and my kind. No they hate us and throw our grit and determination in our faces. Don't tell me the above quote written is not hate. Of course it is. It oozes resentment wirth every word and I did nothing to deserve that.


My Facebook status today:

I don't believe it. I slept 10 hours! When I awoke I thought it was 11 until about 5 minutes ago when I noticed the mac's clock. My beautiful watch is till not easy to read thru bleary eyes! I love it though. A lot of pain this morning. I now know for sure that exercising causes it. Nothing I can do about it. I have to exercise. Not just to keep my weight down but it helps my body to retain it's strength and use. Doing nothing hurts too but in the long run it would mean me becoming weaker and weaker and less able. 

 You know, I hear people complain about the size of some people they see on mobility scooters and wheelchairs. They nastily conclude that if they were not so greedy they would not be immobile. BOLLOCKS! Any of you reading me will have realised I am sure just how difficult this is. One must have fortitude an courage to exercise when it hurts like hell. to go and exercise even though you are hurting. To go and exercise knowing that is all you will do that day and you will be paid in spade loads of pain later. And if these people do not have good and well trained in pain management Doctors they couldn't do it anyway. This last year I have gained a stone. I hate it. It is now going to be hard work to get rid of it. I will but it's hard. Gone are the days I could be rid of it in 4 weeks just like that. I have to eat less than a man my height would eat anyway just to maintain. 

Despite the exercise, I am not active the way an able bodied person is. It is also EASY when you are immobile and hurting to comfort eat. Those that really make me mad when they are judging the 'fat bastards' in chairs'who have no will power' are those saying it with a fag in their mouth. Those same people condemn drug addicts and alcoholics, all the time dropping ash all over the place and stinking to high heaven. Yes, I was a heavy smoker. I am horrified to note how much I smelled when I smoked. Yes, you smokers, you stink and washing and scent and mints make no difference. Yet this is another drug addiction that is hard to quit. I know. John and I both did it. John quit cold turkey and he was a nightmare to live with for quite a while. I cut down. I was told that wouldn't work. It did. What tipped the scales for me was not being prepared to smoke around John. 

Well I never know what will come out of my mouth when I do these statuses. I just hope that maybe we can all be a little more understanding and compassionate in 2013. There was one of those anti-bullying things that I would have posted had it not been for the last line: 'I know 99% of you won't re-post this'. The moron who wrote it clearly doesn't think that that sort of emotional manipulation is bullying! I refuse to re-post anything that has that sort of crap in it. It turns what appears to be good into something vile and sour and says something really unpleasant about the writer. I do not trust people like that. Their so called compassion is fake. Sentimentality leads to the most appalling cruelty.

Thursday, December 27, 2012

Wednesday, December 26, 2012


Phew! No Rain!!! I hope those flooded out also have no rain. No flooding here. I was thinking about how we'd be if the flooding was here. Just terrible. It bis bad enough for the younger and healthier. I feel for those poor sods who are similar to me and have been flooded out. Truly awful. 

I seem to be sleeping much more recently. I was up late yesterday, had a 1.5hr nap in the afternoon and was asleep my midnight and still slept till 8.30am.

Physically, things are rough. I am sure because of the rain and general dampness.  Am on a course of anti-inflammatories. Believe it or not, pain from inflammation is not dealt with by morphine.

I finally finished the pair of socks I started ages ago. The yarn is very soft but cheap. a 45% wool and the rest is acrylic and nylon. I bought in in a dept store in Frankfurt where we were for our honeymoon. It wasn't easy to knit with as it knotted easily and also split. I love the way it has pooled though. These are simple tube socks and I find they fit just as well as those I have knitted with heels.

The show season sort of kicks off with Cruft's on March 8th which I am dreading. I hate the NEC as it is always a very long way from the car park to the show benches. I have had to pay £10 to park as no free disabled parking and to add insult injury I have had to pay for a £12 ticket for my helper.

After this show comes April with a Championship club show and then an all breeds champ show. This is when it all kicks off right through till December.

I know I am projecting, but it scares me somewhat. I am neither physically nor mentally for enough for this yet and I feel under pressure to make sure that I am by then. There is part of me that wants to quit now and decide not to continue. A stronger part of me doesn't want to do that. A day at a time, Colin.

Monday, December 24, 2012

Saturday, December 22, 2012


Monday, December 17, 2012


This is Ch Plenty O'Toole isa Kutani. She is owned by Wendy Cain (Kutani). 

She is shown here winning G2 at the LKA on 14th December 2012.

She was bred by me and is out of BISS Ch Polielins Whitney with Tantra and sired by Eng Aus Ch Kutani Secret Agent. She was born 7th January 2011. She has 5 cc's now. Like her mother before her, she is a young champion. Hopefully, she has more ahead of her.


My birthday turned out to be very good. I was totally distracted from the fact of it. I am not at all bothered about getting older. I feel amazed and lucky to have got to 54. No I hate my birthday and Christmas because no matter how hard one tries memories of birthdays and Christmases past are always in the forefront at this time of year.

We had visitors yesterday. The owner of the father of my litter of puppies and her partner. We really enjoy their company. We got to talk about dogs for a short while. We all agreed on which was the best puppy.

 We also had two other couples arrive later in the afternoon to choose their puppies. The three puppies that I am selling are at now all sold and they will go to their new homes later this week.

I think I may be learning how to put the concept of pacing myself into action. I had my swim yesterday morning between 8 AM and 9 AM. I then came home and I bathed the puppies.  Then we had the visitors.  I spent far too much time on my legs. Five minutes is too long. By the evening I was very tired and in a lot of pain. I began to think about my plans to today and it occurred to me that  I ought not have any. I did not go swimming and I have no plans to do anything else. As it is, I am having a lot of difficulty walking today and have enough pain that it comes through even with the morphine.   I think by deciding to have a rest day that I am learning about pacing myself.

I know that I have to face facts but I do find this rather frustrating. I value my freedom very much and I do hate to be limited. But I have learned that by battling my body the way that I have been, I have just made matters worse and I have in fact progressed more quickly because of it. No, if I think about it, my problems are no worse. I think that I am just less able to force myself than I used to be. Part of this change is also to accept help when I need it. To this end, when a friend and shop assistant asked me if I would like them to do my boot laces up after I had tried on a shoe, I answered yes, even if after a little hesitation.

Within myself I feel very much better. It is clear to me now just how stressed out I had become and how this was clearly manifest for at least three months  before I crashed. Because I am feeling so much better my thinking is much more clear. I can see what happened and why. I can also see how I got through the crash very quickly because my previous recovery is indeed real and I used everything that I had learned to work through this much less painfully and more quickly. All that happened is what I have frequently said on this blog: we never fully recover and that the episodes of flashbacks and grief and night terrors and fear become less frequent and less intense. Even though my crash was pretty intense it was  short lived and perhaps would not have been so intense had I recognise the signs earlier. Although to be frank I do not think there is any point ruminating over the fact that I didn't recognise it sooner. It would seem that no matter how aware one is,  these episodes will still happen.

I am becoming increasingly angry with the government and its determination to make disabled people pay for the deficit. They are in the process of reassessing all of us and they are removing disability from many of us also. Their own figures show that only .8% of disability claimants are fraudulent. You would think that people like me with progressive debilitating diseases  would be safe but we are not.  Many such people have lost their disability and their cars also. This really worries me. Without a car fitted out with a crane to lift my wheelchair in and out I would be housebound. I would not even be able to get to my doctor. I have yet to hear anything. That in itself is stressful. 

I am completely astonished and angry that the government are picking on the most vulnerable in society in this time of financial insecurity. They have convinced the general public that not only are we a burden upon them, eating up their taxes, but that most of us are fake as well. Hate crime against the disabled has risen by 75%. I feel even more angry because there was a time when I thought that our Prime Minister  was a more compassionate conservative who understood because he had a disabled child. I now realise that was very foolish indeed. Having a disabled child did not make him any less rich and had his son survived he would never have had to worry about disability benefits because he had multimillionaire parents.  Mr Cameron just does not get it and he most certainly does not care.

Friday, December 14, 2012


 I am aware that other abuse survivors read this blog. This has made it difficult for me to think about writing an account of what has been going on with me recently.

This year has been a tremendously stressful year. As is often the case I'd did not appreciate this because much of the stress was caused by the renovation of our house and of our wedding. I really did not think that I could complain about these things.

I still do not really understand how I could have de- stressed. 

After the SKC  show in August  when John was rushed to hospital from our bed-and-breakfast I remember very little. Oh I remember certain things happening but I do not remember them in order and from August until last week things are pretty much a blur.

There are two things that I know really did stress me. Whitney's four-day labour and the news on the TV.

The news regarding Jimmy Saville  was very disturbing. I tried to ignore it. However, although I was not abused by this man much of the news reporting harked back to the 70s. This triggered off many memories for me. I began to not sleep well. My thinking became disordered. By that I mean I began to have illogical thought patterns. 

I was unaware that I was being affected. I was still swimming as much as I could but I stopped communicating in the way that I normally did with my friends on the telephone, on Facebook, and even here. Needless to say I also did not communicate with John nor with my doctor despite the fact that my physical problems were growing and my falling over was becoming really rather dangerous.

Through this period I also had two government  interrogations with regard to my health status. Talking about my health makes it very difficult for me to  stay detached  and thus the pain became more intense.

I also became much more forgetful and this affected my medication. I either would not take it at all or take too much because I had forgotten taking it. And I continued to not sleep well.

Then it happened. I had a  series of flashbacks and night terrors which led to a full-blown panic attack.

Leading up to this I think I knew that I needed help but I was feeling very ashamed. I think I knew full well what was happening and I felt just too  ashamed to tell anybody.

I really believed that this was never ever going to happen to me again. I went through six months of hell which started in September 07 and finished around about March 08. That experience was probably the worst of my life but the result was that I began to live a life in full colour instead of the monochrome life that I had lived up until then. I came out of that fully understanding at gut level that the abuse truly was not my fault and that the only reason I had been abused was because there was something wrong with my abusers and not with me.

I thought I was clear of my past for ever and that I could not experience that level of pain again. I believe that I had got to the very root of the pain and I had expelled it. I certainly felt that this pain could kill me and the physical pain of releasing it was absolutely tremendous. I physically hurt more than I thought possible. Most especially in my gut. I have since taken medicine twice a day that stops the constant contractions.

My thinking really went to pot. I stopped going out and if I had to go to the supermarket I went very late at night. I began to believe that my doctor would lose the trust she had for me if she knew the state I was in. I really believed that everybody would think I was a fraud and that none of my recovery had been real and most importantly the experience I had five years ago which  truly had left me feeling born again. The best way I have found to describe the difference between Colin pre-spring 2008 and Colin Post Spring 2008 is the difference between monochrome and Technicolor. It required no effort on my part. The colour just came into my life and stayed.

 PTSD can be a real bugger.  It sneaks up upon you.  At least it did me. It started with little overreactions, with little illogical fears,  in such little ways it is hard to detail. It eventually builds into the glaringly obvious but by that time denial has kicked in really strongly. I believe not just in me but in John also.  He says that he noticed that I was changing and becoming how I used to be before a crash was coming. Yet he also cannot pinpoint exactly when. It may be unfair to say that he was in denial because even if he said something all went to my doctor I doubt very much that I would have said "well actually yes I am having problems."

 Much has happened very recently which has slowly been bringing the colour back into my life and although we are not there yet.

I have had two 3 hour hospital sessions where I have been questioned and prodded and tested. Although I was dreading this and felt rather resentful, I'm now very glad that I was referred to the fall clinic.

 The tests show that my body reacts just as it should in somebody with the disease processes that I have. I had no idea at all about this and this is one of the reasons I feel very relieved.

I think only other abuse survivors will understand why I'm so pleased that my reactions and symptoms are true to form. You see, as a child I was always labelled a liar and disbelieved. I was also taught that one should not complain and that one should just get on with things and not be such a sissy. Consequently, this is how I have approached  my illness.

Instead of the acceptance that I thought I had I instead had a very unhealthy way of dealing with it. I truly believed that with enough determination, and the pain meds that I finally gave in and  took, that I could live as if I did not have a disease.  Not only did this contribute considerably to my crash but I now think it is probably why despite everything I have done in the way of exercise I have progressed quite a lot since 2004 when I was diagnosed. 

 I have been under reporting my symptoms. I have been not telling the truth when I am asked questions about how I cope. I have not deliberately lied. My answers were in accordance with the don't make a fuss attitude.

 For instance,  my answer to the question "can you shower yourself?"  My answer has always been yes. The hospital physician asked me to explain step-by-step how I showered. My answer showed that in fact I cannot shower myself because I do not do what a normal person would do. I dress over a wet body  because I am unable to dry myself. John noticed this when I showered at home, which is not usual for me. He asked me why I was sat with towels wrapped round myself. Was I not getting dressed? When I told him that I was waiting to be dry he pointed out that this meant I was not capable.

I have to learn  how to pace myself and how to admit that I cannot do something or that I need help. I also have to learn to accept help. I think I did that today. I was in a shoe shop with John and three other friends. One of my friends asked me if I would like them to do my boot laces up. I almost said "no thank you" but I realised that this was one of those times that I should say yes because bending even from a sitting position to try and do my laces up is time-consuming and painful. I did not feel ashamed or embarrassed. Instead I felt taken care of. I was pleased with myself for accepting the help. It is only a small step but at least it is forward.

I also had a good, very good, session with my doctor. Not only is my trust in her back, yes I realise that my fear that she had lost trust in me was in fact me losing trust in her, but I now know that she really does understand me. She told me that many people were negatively affected by the Jimmy Savile affair. She said many were my age and had been either children or teenagers in the 70s. This was helpful to me, knowing that I was not alone. We also discussed my medical needs and my underreporting to her. We both know that we have some work to do here.

I have also accepted an appointment at an incontinence clinic. This is a big deal for me but at least I finally brought the problem to the attention of my Dr's. I might add that it was John I first broached the subject with.

As I have so often said with my fellow abuse survivors in mind, we never recover but our flashbacks and times of distress, the nightmares, the fear, become less and less as time goes on and as we work on ourselves. I said as I was taught, and as was my experience, that the incidents that cause distress became further and further apart and much less intense. As you can see,   I did not see it coming and when I did I was too ashamed to admit to it because I felt I was letting everybody down.

I can now see just how stressful this year has been and how the combination of events both good and bad all came together and in so doing brought me to my knees.

It is important for me to recognise that I got through this much more quickly and much less painfully than before.  Although I did experience terror I was able to deal with it effectively because of my past experience.

As I have said and I continue to believe, we never truly recover we only gain the strength and insight to live with it without it destroying us and our lives. I am still here and I still have a very good life. I have learned much from this episode.

I am very surprised to find out just how much attitudes that were given to me by my family and society at the time I was growing up regarding keeping a stiff upper lip etc have infected me.  I also was very surprised at how reluctant  I am to ask for help and most especially to let anybody know just how I am feeling.

My very first reaction to pain, to feeling pain, is to feel ashamed. When I broke my foot, I was about 14, I've very clearly remember how it felt and how much I wanted to vomit and also just how much shame I felt and how I did not cry and I hated myself for wanting to. I still feel  this shame with regard to my disease and its effects. I know how illogical it is and how damaging it is and I am aware that I need to work through this, that it is my fathers attitude that has been forced upon me. I do not need it and I do not need to continue to think the way I was taught to think. (It is always astonishing to discover just how much we have taken on board what we have been taught. It can make me very angry when I realise just whose  ideas I am living by.)

What I am about to share now I share only because I really do not want to. The grief I experienced this time made me very angry when I realised what this particular nugget of pain was about. It was about the little boy Colin still wanting to be loved by his father. When I heard myself say this I was infuriated and embarrassed. How the hell could I possibly want that man to love me? I am not sure where I am with this but I am aware that it is not me now but me then. At least I have got that out. I never know during the buildup  what is going to come up. I am not even aware of anything wanting to come up. So when it does and I hear myself say whatever it is I am always taken by surprise. It is only this time that I have also felt very angry, not to say confused, at the feeling expressed.

Thank you very much if you got this far and I hope that it is of some benefit to you.

Sunday, December 09, 2012


Medics have said that John and I, but especially John I suppose, need to speak up at the first signs of stress reactions by my body or mind so as to avoid this crash into a tough relapse. Well, today, as I was about to cast off my pair of socks, I noticed not one but TWO dropped stitches, way down at the start of the leg. Mmmmm...that is a sure sign me thinks! Other than that I am not sure. 

 I fit in a swim today with rather interesting results. I loved the swim I have to up one of the meds in order to do it relatively pain free. All I had to day was pins and needles down left side of left arm and then numbness. Unfortunately for my body, they decided to start the pool maintenance whilst I was swimming during the final hour of the day. The pool gradually got cold and as it did so, I got cold too. NOT a good thing at all for me. I got out when it became too much. trouble is I thought it was me and this worried me but as I was no able to swim straight by this time, when I hit the far wall it was not in my usual place and I could feel the cold water rushing in thru the holes in the wall. Okay, I thought, not good, get out. Well, since then, my jerkiness and shaking has come back with a vengeance. At least I know it is not connected to either use of or non use of my drugs as these happen with or without. 

 Hospital again tomorrow. Another 3 hour exam. I am thankful for all the interest and care but I hate this. Talking in depth about it brings it very much to the fore and I feel much more than I would normally and I also think much more about it's ramifications in our lives. A close friend hates it too because it makes her cry. It doesn't me. I am not detached from all of my feelings, just my body and it is hard to remain detached when talking about it in depth like that. I end up back inside myself and then I feel it physically which clearly is not so brilliant. I can't just say 'out, get out' to myself because I have no idea how I detach from my body. It isn't that i don't feel hurt, I do, but my mind is on other things. Sometimes, that doesn't do it, clearly, otherwise I wouldn't use pain killer's. 

So I am not sure if I have even explained cogently why talking about it in depth is something that causes more awareness of the pain and the future. Okay, the latter, the future, doesn't take a genius to figure out-awareness of my body as it is now brings with it fear of what may happen, MAY, in the future. It is not knowing that is hard to plan for and coem to terms with. It may not get any worse, though in this last 8 years it has, and over the last 30 very much so. That doesn't mean it won't anymore and my dr says what i do for myself has lessened the effects on me today. Who knows if that is true. It does indeed give me goals and achievements and makes me feel other than useless. I am also pretty surprised by my own tenacity and determination and capacity for pain. I would never have guessed this to be how I would deal with a debilitating, painful, progressive disease. 

 Whilst I accept my disease and do follow my dr's advice, I still under report. For example, if asked 'can I shower myself' my response would be yes. I can get my clothes off, usually slip on slip off. I would have much more trouble if wearing proper clothes. I have bars to hold, quite a few, at the pool which is why i prefer showering there even after converting the bathroom to a walkin shower at home. At the pool there is also an emergency cord. I can stand under the shower. I have not thought about this part which is the reason why i am told I cannot shower myself-I rely on the soapy water from my head to run down my back because I cannot get there with my hands. I also dress wet backed because I cannot dry myself. I never mentioned that. I just said I could shower myself. 

 I have got so used to what i can and cannot do or the way i do things that I no longer recognize whether it is normal. Meaning how much of what i do is not what an able bodied person does. Adaptations are slow, as the disease progresses and I become more normal to myself and less normal to others. This is so hard to think about and to see. 

 That is all I can manage today. I am pleased to say that this was hand typed with very few errors and no gobbledegook. Typically odd when my fingers and arms are jerky and shaky but I have been watching my fingers on the keyboard and paying attention to guiding the correctly. This not back to the 80wpm all finger typing I was once capable of. No just two finger typing but I am doing it accurately, for the most part, today, when mostly I need to use the speech to type program I use. I don't know if this concentration on my fingers so as to type this by hand is a plus or a minus or a nothing, meaning it makes no difference either way.

Tuesday, December 04, 2012


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.


Monday, December 03, 2012


Lunch out with friends turned expectedly emotional. I found a conversation led me to a place I didn't know was there and didn't have a chance to avoid it once it was obvious what was coming into view. 

My dad.

Came into full view.

I thought I had buried him. 

I had won. Despite everything, I became myself and am living a very happy life.

Then my Dr tells me there is a chance that my neurological problems stem from his hitting my head so many times. The one I recall the most is the throwing a bookcase at me my which slammed other side of head into ornate coffee table head. And other fun times.

Now I knew something was brewing but I couldn't' think what. Maybe I am not so accepting of my physical problems after all. Maybe I am a fraud and really resent this or just can't pretend I have balls can deal with this like it appears. OR, and this was more like the truth, I ought to find all of my dog's homes now, because anyway John is old and can't hear and he'll be dead soon and then I won't be able to look after myself, let alone the dogs, so I might as well go now because there is no way I am ever ever ever going back into an institution and where could one be assured of one with no abuse or neglect. Exactly. Nowhere.And besides, why on earth, even if the carers were all angels, would I want to be in a place like that waiting to die and in the meantime need daily humiliation. No thank you. Not for me, Seriously so. Not for me. All of this sure to happen. The houser enovations ahve been a utter waste of time and money because John now needs ear aids and can't wear the damn things because of an ear infection which won't go away, so he must me dying sooner than I thought and then I won't be able to look after myself nor the dogs and I don't want to be on of those people who let their house get smelly and their dogs ungroomed and unwashed and shit filled cages so I have to rehome them  BEFORE I then do the obvious, except I have to wait until John has snuffed it and what if I become incapable of doing it before he dies? then what? I'd still be alive, he'd be dead, and I would be taken  into care and straight back to childhood.

So that was what the thinking has been like recently.

When really the chat with the Dr brought something I didn't know I felt and I didn't want to feel it either, more to the point. 

You see, I have been really proud of becoming the man I have become because in order for me to become me, I had to beat him. I had to undo all the damage his mind fuck of me did. I pretty much succeed. Great life, successful long term marriage, living a good life and not only that can deal with physical pain 24/7 showing I was not weak willed, soft, cissy he always siad I was, with such disgust on his face. 

Well, if he permanently damaged me physically and my neurological problems are the result of all those head knocks as a child, whilst my brain was developing, then I had not beaten him at all. He'd won. He's permanently damaged me. There is no getting well from this. He'd won after all.

My friends and John all roundly disagreed with my assessment of this, as they think, even if it were the case he caused me permanent physical damage, I still overcame him.

All I know right now is I am very confused about it. I feel such an ager toward him which i have not been aware of before, I feel like I am grieving yet again over shit that has been raked over and over and over and I thought I had well and truly killed him dead, out of my life forever.  Meaning, I felt I ahd finally become myself, the biggest victory I could ever I had and i could live with the knowledge of what he did to me, knowing he didn't want me as his son and know deep in my heart that HE was the problem and not me. I still know this. I know I was  not the one who needed to be different as a child. I know that aman who does that to a child is not an adult and is a coward. I know that. Those who have known me the longest know it too. They know Colin prior to the epiphany which gave me this knowledge about where the problem lay, not with me, and how that knowledge changed me. And let me become me.

Now I feel that if he did damage me physically, I didn't survive him after all. This is with me for life. Which means he is. No matter what, what i do, what I think, what I feel, epiphany or no, he is there 24/7. 

So this is what has been bothering me and the crazy stuff up above about John dying and my house being the papers as a den of bad dogs and mad owner was the crap going around in my head to avoid me thinking the above about my dad.

PLUS on top of this, I have felt bullied by certain people in my dog show breed fro quite some time. Recently i wrote an article, correctly factual, and it has started up all over again. The same few people are out for me. Now when I first came back to the UK in 75, it was clear I was disturbed and later mentally ill. In the late 70's early 80's when  i was trying to get my life together and fulfills my dream, I was also mentally ill. It showed. People could see it. Well I know for a fact there has been gossip, current, about that Colin who no longer exists but he did exists and for truly terrible reasons, and shame on you people, you ought to feel compassion for me as I was and not use use it now to shame me into shutting up. What you have been told about me is lies but I am sure you don't even care about. What you are doing is bullying. Yes. Plain old bullying. Shame on you, especially on those who I have felt compassion for among and tried to help you out and you turn around and thank me with this. Well, the mentally ill boy you thought you knew doesn't exist and a good caring and compassionate man does, but also no longer a fool and not blind to the malice of others any longer. I believe in giving people chances. I know when that chance has gone. It has gone. I am not ashamed one iota of my past, of having been mentally ill. I had the spirit to overcome it all and more and took more courage and strength than you will ever understand. I think the biggest mistake was thinking I was stupid. 

Well the paragraph above is quite clear and I understand that. I know what i think and feel about it and I will ignore it or stand up when and if I need to and make it very clear to these people that their behavior is unacceptable and they will not bully me into lying or hiding genetic facts.

The f*cking dad part, I am lost on. I need to find a way past it. I know what i have written and usually I come to my own conclusion but with this I can't. Today I feel physically weak, cold, trembly, the way I do when having an emotionally gruelling ordeal which this discovery today has been for me. I didn't expect to talk about it tonight. But I have. 

It is no good pretending oh it probably wasn't his actions but is unconnected. That could be the truth. We will never know. So I have to fin d a way of thinking I can live with this knowledge, than much of difficulties, those that will not go away and may continue to get worse, might have been caused by him, and not have it feel like he is back with me 24/7 and that he has in the end beaten me anyhow because I cannot fight this one. I could fight for my soul and I won that. I found who I was, I found my spirit, and I know me and my inner self HAS survived him. I cannot make my body well and if he did that too, I find it really to explain the rage and greif that makes me feel, that he can still control me until the day I die,  through my fucking disease! I had no control back then over what he did to my body but I really felt free of him. Do you see? If HE damaged me permanently, I will never be free of him.

Okay, so now through writing I know what the issue is but have no idea how to resolve in a way that adds to my life because right now I feel robbed of all my hard work. 

I don't know how to get past this.