WRITING IT OUT

 Over on my Facebook page someone left a photograph which showed a line of white plimsoles  amongst which was one pair of red  ankle trainers. The message was  "if you are lucky enough to be different,  don't ever change."

 The trouble is if you are different you cannot change.  You can try to change. You can pretend to change. You may even convince others that you have changed. But you won't have you will still be who you are.

I want to make it clear here that I'm not talking about such things as addiction, lying, being nasty to others, stealing. No. Those things can be changed.

Being who you really are is what cannot be changed. I know.

Being different is not being a teenager wearing shocking clothing or shocking hair or even being a fully grown adult doing the same thing.

No. Being different is the way you were the minute your mother's egg was fertilised in her womb. We will never ever fit in with the crowd. We may look like we do. We may do everything we possibly can to fit in with the crowd and when we do that we do it at the expense of our soul.

For me, it was a case of being myself or face death or a lifetime in psychiatric care.  I did not know this at the time. I had taken on board myself my families deeply negative opinion of me especially my fathers disgust of me and the opinion of the religionists that I was evil and always would be. I had also fallen for the psychiatric labels I had been given. I think I wanted those labels because I thought by accepting them by accepting that I had a mental disease that I would never get well from then all this pain would go away and I will just take medication and I would be okay and I could stop hating myself.

However as much as I dearly wanted to please the psychiatrists and myself it was very clear that nothing that they labelled me with and no drugs that they gave me made any difference to me. The self harm continued.  The only time it can be said that the self harm stopped was when I was in a manic state. For those who do not know mania, at least for me, was euphoric. I loved myself. I loved everybody else. But it was clear that I was crazy. Not at first. And not to everybody. I was accepted as a hairdresser apprentice, into drama school, and even as a psychotherapist! I'm not going to lie and say that I do not miss those periods of mania I do. Unfortunately, I cannot control them and so they become more and more intense until only a moron would not realise there was something wrong with me. I was very lucky that I did not get into any serious trouble.

I only ever ended up in hospital when I crashed. Meaning by this when the mania stopped. For me the stop would be sudden. And I would be left bewildered exhausted and extremely depressed and not wanting  to live and having very little recollection of the previous months that I had been high. One of the most painful things was that during those highs I would make friends with people. But the Colin they knew was the manic Colin and so of course when manic Colin disappeared so did they. Not all of them. Three of them didn't. Judy whom I have known since 1979, my husband John whom I have known since  1981 and my friend Dawn who I have known since the late 80s.

 What eventually freed me, was first of all accepting that I had been abused. You would think that this would be obvious. But now it wasn't. I never saw any of what happened to me as abuse. Not even what my teacher did to me who was a child pornographer. I never thought that my father banging my head into the wall or having his hands are my throat or saying how much  I disgusted him or my mother constantly telling me that I was a bad boy and deserved to be sent away and it was only because she was such a good person that I wasn't.  She would make Bedtime stories that were always about little boys and the horrors that awaited them if they were naughty. Both my parents were control freaks. Clearly they had their own issues.

It wasn't until the late 80s when I was watching an episode of Oprah Winfrey and I heard a young man and the young woman sitting on the couch telling their story of their childhood.  I heard them and I wondered why they were making such a fuss about it and I also wondered why Oprah was crying and why when that camera panned the audience they too were in tears. I knew then for the very first time in my life that what had happened to me was not right. It was not really a Eureka moment because I didn't immediately stop hating myself and I still thought I was a bad person.

It was not until 1994 when I started having such severe flashbacks that I thought I was going to die or go insane but I started looking for help. Of course I did not look for that help from my doctor. Oh, yes of course it was the first place I went when I had my first flashback and all they did was give me a prescription Valium and  chlorpromazine. They didn't much care. Colin was just having another one of his episodes. Well I knew better than that by then.

I found a private therapist who specialised in helping survivors of abuse. He was a survivor himself. I believe that only survivor can really help another survivor to recover enough to live a good and productive life. I say recover enough because we never fully recover. It is more a process without an end. I really hit bingo with this man. He made a promise to me that he would be there for me 24 hours a day seven days a week whenever I needed him. All I had to do was call and he would talk to me as soon as he could or even see me as soon as he could. I saw this man for five years. He never once labelled me. He never once criticised me or humiliated me. He never once told me anything. He listened. And he gently pointed out how their words different ways of thinking. This of course was extremely painful for me because I have been told there was only one way to think and at the time it was the way my religion taught me to think and my parents taught me to think. If I thought differently from them I would surely die because God would strike me down dead for being so evil as to even dare to think differently to the way I have been taught.

However, he was expert at the programming and slowly but surely over the five years he got through to me but in the most gentle manner. He was very parental. We are occasionally still in touch. There are professionals who think that what he did was very unprofessional in that he should have seen me for 50 minutes once a week and left it at that. My therapist new that I wasn't going to live very long and he knew that if he was really going to help me then it was going to be a full-time job. It did not prevent him having other clients. After five years it was my choice to end our sessions together. I felt I had done as much work as I could and there had been enormous change in me. There was still much more change needed but I didn't know that. It was still the right thing to stop my sessions when I did. And anyway he was always at the end of the phone for me if I needed him which on occasion I did. Generally, I just got on with living a life that was very much lighter than it used to be.

However I was still not happy, and I was still vastly overweight. I knew that the abuse that I suffered was wrong. I knew that the things that had been done to me were wrong. I am not talking just about my family nor my teacher who was the child pornographer, the bullies that I seem to come across everywhere I went, the so-called nursing staff in the psychiatric hospitals and this car chase in the evil drugs. Some of my absolute worst behaviour took place whilst I was full of chlorpromazine one of the things that I did still haunts me to this day. Knowing that it was not my fault, knowing that were it not for the drug I would never have done such thing does help but the memory of it stays with me forever. And no I did not kill anybody nor abuse anybody.

The real freedom came for me the day I realised that it truly was not my fault. Prior to that day I understood that it was wrong to abuse child or an adult in the manner that I had been. I still believed however that I was abused because of who I was. That little piece of evil was lying right at the bottom of the barrel and it had not been seen by anybody not even myself.

Strangely enough what brought that finally to the surface was meeting somebody that we had agreed to meet on a holiday in another country. From the moment we met this person was unpleasant to me and I do not wish to go into detail but at one point caused me humiliation and anger by doing something that she knew I could not tolerate. She had also left out a very important piece of information about herself.  anyway none of that matters. What follows is what matters and this person did me a huge huge favour.

Soon after arriving back I was at a dog show and I was feeling a lot of fear in my stomach I mentioned it to my friend and she said it was just nerves and it would go away. It didn't. It grew. And it grew. And it grew. I was petrified and I couldn't stop crying. I was absolutely convinced that I had a tumour in my belly.  fortunately I had a wonderful doctor. She sent me for all of the requisite tests and she showed me the results which said that I did not have a cancer in my gut. And I would sit there crying and saying but I can feel this lump there and it hurts badly and I am terrified. And she would reassure me and tell me that it would be okay and that this needed to happen and I would get through it. I had no idea what she was talking about but I trusted her.  over a period of five months this continued. Then one day I had come to the end. I knew that at on that day I was going to die I could feel it. I didn't call anybody. Instead I walked round and round and round my room not knowing what to do. I eventually screamed out that I couldn't take any more of this and that if you loved me you needed to show me now. I don't know who I was talking to. I fell to my knees and my telephone rang and it was my oldest friend Judy and she seemed to understand immediately what was happening and she spoke to me very gently and very motherly and as if I was a small child and she was telling me over and over that it wasn't my fault that it wasn't because of who I was and then this awful tumour in my gut burst and I must've sounded like a wild animal but my friend stayed on the phone just saying comforting things as I howled out the very last of the pain inside me. What I have written I don't think comes that close to what actually happened but I cannot find words to describe the agony of those months and the agony of those last moments when the monster finally left me.

I lost a great deal of weight after this, eight stone, or over 100lb, and the way I dress started to change. The people I had in my life also started to change new ones came in and a lot of old ones went out.

I am still learning and still growing. I still have flashbacks occasionally. I recently had the most humiliating experience of having somebody pushed one of my buttons hidden very deeply inside me. I was in public and I could not get away. I could feel myself crumbling and all I could think of openly is no not here not here not here.  a very dear friend  saw what was happening and she took me back to my wheelchair and made me sit and she did not say more than a couple of words to me before  the tears flowed.  I didn't need to explain anything to her. She is a very good friend with a very good heart and a very good intuition. She knew that something had occurred which pushed one of my abuse buttons.  and then later as I was going home another dear friend could see that I was a distressed and she was very kind to me and she offered me a piece of jewellery that I had admired earlier and jokingly took off her jacket to put  on mine. It was such a lovely gesture but of course I did not take it. But I will never forget that she offered it to me and she meant it. If I had taken it she would have been happy. But I didn't take it her friendship is enough.

Recently and this is very difficult, I have not been feeling good at all. I feel in a very low mood a lot of the time low enough to feel that I would rather not be here. (It is not something I would do now so there is no need to worry.)  I keep telling myself that should not be feeling like this since everything is going so well. 

I really cannot understand… As soon as I wrote that I realised that of course I understand. My disease has worsened a lot. And it is now really beginning to interfere with what I can do and cannot do. And right at this moment I don't really give a dam that there are other people worse off than me. This is me that I'm talking about not anybody else. I asked John last night if he thought I would still be able to be doing this in two years time then he said yes of course you can. How long do you think then? Seven or eight he said or even longer. I am only 54 even eight years only takes me to 62 and that is far too young to become incapable. this recent trip to Scotland I really enjoyed and I handled well because I was well medicated but I was so ill on the Tuesday. The days after dog shows are becoming much worse. Fortunately John is mainly here because most dog shows full on Friday Saturday or Sunday and John only works Tuesday Wednesday and Thursday now that he has retired.

I know people think that I am very much an extrovert are well of course I must be because of the way that I dress. No. It is part of my act. I can't really explain it but it is like putting on a costume and a different me comes out. It is almost like a different version of the manic me, all rather I mean are toned down version. It also distracts from the fact that I'm disabled because people do not remember me for that and I am no longer described as such. If people want to know who I am they don't say looks and a man in a wheelchair all ups and man in the walking sticks they described the man who dresses up or who has odd coloured boots. Don't misunderstand me. I love the show's and I enjoy the nice comments I receive about my outfits. But I am so glad when I get home and I can take it all off and just be me and stay indoors until the next show. I live quietly. I knit, I watched DVDs, I read, and I spend my time on here. I rarely go out I really enjoy my own company and the company of my dogs. So this really extrovert man everybody thinks they know doesn't exist at all. I am very glad though the I have pulled it off.  I am also very proud of myself for doing it. Know one is more surprised than myself that I dress the way I do and that I make myself so visible when all I want to do is shrink away into a hole and be on my own. I certainly wouldn't have thought that I could cope with being stared at but then I also didn't know that being stared at was not always a negative thing. twice at Scotland professional photographers asked if they could photograph me. This is not the first time this has happened. I find it truly amazing. It makes me laugh inside.

 I won. 

BHAJI FEVER

 I slept and have only just got up. John made his own way to the station or rather got a taxi. I am feeling much better today in fact I feel my normal crappy self rather than my horrible crappy self. I was thinking that Indian food is very fatty and they use clarified butter to cook and the meals that I enjoy the most are the SAG bhaji and the onion bhaji  and mushroom bhaji.  all of which have liberal amounts of clarified butter. I think this on top of the fact that I had had such a long trip and that I normally only eat chicken and plain steamed vegetables is what made me really sick.

Anyway this has completely cocked up the doctors seven day trial of knocking me out to try and get to grips with the exhaustion. I of course am totally unaware that I am exhausted because you get used to feeling a particular way. But she says that the reason my symptoms have worsened so much so quickly recently is because I am only sleeping for two or three hours and then waking and dosing for a couple more. The reason the trial got cocked up was because as I was preparing my drugs to take with me to Scotland John talked to me. I don't know how many times I have to tell that man not to interfere with me when I have to concentrate on something.  As a result I had all my drugs together except for the knockout pills so that has completely buggered up the seven-day trial. I have just called the doctor and am waiting for a call back to find out what I'm supposed to do.

It is just as well that the swimming pool is closed until Monday or it might actually be until Tuesday. This means I cannot swim and I have to rest and so I should be able to get on with some knitting as I am still stuck on the same bloody socks and the same second side of John's Aran sweater. I have had to frog that sweater several times now and am going to have to frog back at least four rows because I have noticed the mistake with the travelling stitches travelling the wrong way-again! 

For anybody that has not use Lantern Moon Needles and can afford to I would highly recommend them I love them. These are ebony circulars. I bought them in a set. I now have several sets of various brands some of which are fixed and some of which are interchangeable.

It is so good to have Luque and Whitney home.  It is really very sweet to watch the other dogs greeting their pack leaders.

 I have just noticed that Monday is 2 September server pool will be reopened. although I doubt that I shall be going on that day because I have a dog show the day before!

It is really beginning to concern me how terrible I feel the day after a dog show. And no I do not feel tired or headachy I am talking about feeling totally incapacitated unable to get out of bed, John having to bring my drugs upstairs and even then it can take an hour or so before I am even able to take them and then another couple of hours if I am lucky for them to work enough for me to get out of bed only to go downstairs and plop in the's armchair  and stare at the TV. I am completely used to feeling very tired after dog show but I'm not used to feeling this bad. Perhaps it is just a relapse and I will go back to normal soon. For those that don't know I have good periods and I have bad periods the bad period so what are called relapses. Although the good periods are not exactly good they are just much better than the relapse!

I am so glad that John decided at the last minute to also take today off, I mean yesterday, because goodness knows what I would have done without him  there to help me. As it was my heart pills which I'm supposed to take 12 hourly did not get taken until 4 PM along with my other drugs because I just couldn't swallow anything without fear of it coming back. And of course he helped me by bringing me drinks and generally holding me while I shook. He is very good at looking after me but when he is sick he gets very stroppy if I try and look after him. Men are funny creatures.  Men always go on about how difficult women are and how unfathomable they are and yet exactly that the same can be said of men. I think of myself as just Colin because although I am a man and have no wish to lose my Dick and become a woman I tend to think more right brained than left brained but do think left brained in certain areas. I feel I understand women much better  And I get on much better with them.

 I had to call the doctor to explain that I had not taken my drugs to Scotland, the   knock out drugs,  and this because John interfered with me whilst I was counting out all the pills that I needed to take with me and I had forgotten to take sleeping pills stop I have told him time and time again not to interfere with me while I am working on something like that..

This of course messes up the trial completely so I had to call and make other arrangements another appointment and the new prescription. I could not imagine what had happened to the 28 description that I had already been given stop I searched in my jackets and in his jackets and could not find them so I phoned him up on the off chance that he had them. The twat  had put them in the right hand side of his desk!  quite why we did not go to Tesco the day that we got the prescription I do not know stop anyway I did test Tesco to make sure that they had not had a 28 prescription for me and they had not and I also checked that there was not a 20 X fiction waiting for me at the surgery there were not. Later today there will be a prescription at Tesco waiting for me.

 I have quite clearly been in a relapse in quite some time and so I am about to have a remission I hope.

 while, that is about it  that is about it today.Now it is time tonight and watch DVDs and cuddle  the dogs.  in a way I am looking forward to doing nothing for the next few days. I will probably even do some dying and get around to putting yarn in my shop.

TOWARD ACCEPTANCE

Times are very strange at the moment for me.  emotionally I seem to be all over the place. And my body is worse than it ever has been.

I have had to accept the fact that I can no longer do long-distance driving. I must have someone to share the driving with me or to do the driving completely.

The last two longest and shows I have attended I was driven both to and from entirely by somebody else. I therefore did not expect that I would feel terrible next day. In fact I have felt worse! Very much worse.

This I know is not anything to do with the long-distance driving and the dog show about to do with my disease because recently John and I attended a barbecue with some friends who live about 90 miles away. All I did was drive their did some chitchat and drove home. It was easy and a very nice day. The following morning I could not even get out of bed with the help of the electric bed and with John. I eventually was able to get out of bed at 6 PM with John holding me up even though I was using both walking sticks.

My doctor is arranging for me to see a psychotherapist who specialises in people  with diseases that are progressive and caused 24 seven pain.

WHY?

 Well, as much as I thought that I had been dealing with my disease very well for the last nine years in fact all I've been doing is ignoring it and using my drugs to enable me to do what I want to do. I'm not quite so daft as to believe that I had made myself well in manner but I was daft enough to believe that if I took the drugs I could behave as if I was not ill and  and get on with life as normal. I have found out that this is certainly not true.  At least that is the case now as my disease has progressed.

 I know that I will come to terms that this and I'm so very lucky that there are people around me who are also thinking of ways to make my life physically easier.

I had at least become accepting of the drugs that the doctor gives me.   I no longer feel that I'm going to turn into some addicted maniac who it's going to start robbing people and bashing people over the head in the street for their wallets. She explained to me in very clear terms that there is no avoiding becoming addicted to morphine. It is my body that has become addicted to it not me. I recently put myself through a self-imposed ban on taking morphine. I did feel pretty awful and then quite suddenly on the fourth day I develop severe stomach cramps and vary bad diarrhoea. I did not eat because food was the last thing that I wanted and yet the terrible diarrhoea continued along with the cramps. I restarted taking the morphine because I knew enough about morphine  and withdrawal  to know that things were about to get very serious indeed. In fact I very lucky because I am prescribed 2400 mg of gabapentin every day which is a antiepileptic which also has other neuropathic uses. Had I not been taking those drugs I might well have been experiencing seizures long before I got to the cramps or after I got to the cramps am not sure.

Now I take my pills and I just accept that I have to. I no longer feel guilty for taking drugs. I no longer feel like I am a week person who is just the legal prescribed addict. It was a couple of consultations ago that the penny dropped with my doctor about what the problem with me was and my pills. I was not really ordering them enough if I were taking the correct dosages. It came to her of her own volition what my concern was and we spoke about it. I know that elsewhere in my writings I have completely contradicted myself in what I have written here but I believe it has all been part of my denial.

I have very much been enjoying my dog shows and have been successful. I am especially pleased that Mary Grace has now won the limit bitch class VI times and has two RCC. she needs 3 CC  to be a champion and I feel more and more confident that she will become so.

Megan has done very well for herself having one firsts and Best Puppy . Alexander has had 1sts and a Best Puppy in Show.(this is where my stubbornness comes in and my frustration; I have written most of this using my voice to type recognition software but some of it I have typed by hand. What I have typed by hand has had to be corrected as it was mainly gobbledygook. yet I still whenever I approach my computer go immediately to the keyboard with my fingers and sometimes I am so stubborn I will sit there and go through the  laborious correction myself.)

So whilst life it's good and I enjoy my dog shows I do need to speak to a professional long-term disease person because I am not dealing with this as well as I thought.

One thing that my doctor has prescribed is double sleeping pills because she wants me to have seven nights of solid sleep and then do the same thing every third night. She says it is a regime that they have followed with other patients and it has worked for them. Much of the worsening of my problems is due to lack of sleep particularly my neurological disorder.  I drop things constantly and I have been finding knitting very difficult indeed recently and for one week I just wasn't able to do it which really did frighten me.

I think this is going to take some time to work out but I also think that I will carry on doing my best and living as best as I can rather than just sit back in my seat and give up.

OH TO BE NORMAL

As stupid as it sounds I am writing here on my blog because I can't face writing anything on Facebook.

I feel absolutely terrible I don't just feel tired but I am very tearful also. I am not prone to feeling sorry for myself but recently I've been having trouble with dealing with life or mainly people.

The amount of energy I need to expend to get to a dog show is becoming harder and harder. By this I mean the getting dressed up and the act not so much the driving and the physical pain the brief walk around the ring causes me. Now it's putting on my show face and my show gear. I know people don't believe me but I am very shy person and I prefer to spend a lot of time on my own. On Tuesdays Wednesdays and Thursdays when John is not here it is rare that I go out unless I absolutely have to. Yesterday after Tuesday's show there was no way I was going to be able to keep my 1020 appointment with my doctor so it became a telephone consult. She is going to try and find a psychotherapist who is also a pain specialist and a drug specialist. I'm not having so much difficulty taking my drugs at the moment.

This is so embarrassing to say that the feelings that I'm experiencing and the constant crying seems to be about a very strong wish to be normal. To be able to go to a dog show without it causing me two days of pain and exhaustion. To be able to go out and not have to worry about am I going to find suitable food to eat because of my food difficulties. Am I going to be able to interact with people without them misunderstanding my intention.

It makes me sick to my stomach when I realise that I have been misunderstood and the pain that this has caused others as well as myself. I found out recently that I made somebody feel abused by me. They felt that I was aggressive and attacking. I was totally devastated and I still am I am so shocked. Here I am writing about the effects of abuse on myself  and on other people and yet I still made somebody else feel like this.

It isn't just this. I just feel that my life is out of control. My hands are working really badly I keep dropping things or my hand suddenly decides to make a jerking movement and so I drop whatever it is I have in my hand and if it has hot liquid in it then I get burned. I am falling over a lot and twice in the ring I have become muddled about what I'm supposed to be doing.