OH B*LLOCKS!

Yesterday, I was able to swim and to walk the dogs. I took a good dose of my drugs for each activity. This was what I needed to discuss with my doctor because I have got fed up with having to juggle my activities and my drugs.

However, things have not gone quite as I expected or planned. I took a 2nd dose and waited an hour and then I went for a walk with the dogs. Not only was it painful it has completely exhausted me. I am so stiff and sore that I cannot even take my boots off.

This is what I do not understand. Despite the pain being dealt with, (even today although my walk was not pain-free it certainly was manageable and without drugs it would have been impossible), I get so fatigued and achy. It seems to me that a crumbling spine and arthritic joints are not the only issue.

I am disappointed to say the least to discover that even with effective pain control I am still not going to be able to live as if I was fit. To be honest this is what I was expecting from more pain control as it seems to me that it is the pain that stops me doing as I wish. Clearly, fatigue is the main issue and there appears to be no drug for that. Bollocks!

A SUMMER’S DAY

Today has been an excellent day.

It started off well in that I was able to wake up and get up without feeling half dead and without much struggle to get on my feet.

I then did what I needed to do with myself and the dogs, drank my coffee and did my e-mails and my e-banking. I then went off to the swimming pool.

The swim went very well.  In fact it was probably the best swim I have done for quite some time.

I have spent the rest of my time tidying up and putting rubbish in the bin.  I also put three bags into storage because they are not needed right now.  (In this house storage means open the cupboard under the stairs chuck it in, close the door.)

I also groomed out Mary-Grace yet again!  I do not know where all this hair is coming from.  I certainly hope that she stops this moulting soon.

It was not until about 5:30 PM that I started to experience a strong dialling up of my usual physical problems.  For me this has meant that I have had a really good day! The way I am feeling right now is how I mostly feel from the moment I wake up so the fact that I have accomplished so much today with less pain and fatigue than usual is very welcome.

The photograph is of three of my Lhasa Apso girls that I bred which now live with my friend Dawn.  The black-and-white is Shameless, who is the mother of Mary-Grace, the cream in the middle is Moon who is the aunt of Shameless, and the grey girl on the right is Boo (I had named her Shilpa) who is the half sister to Shameless.  All are neutered.  All are very spoiled and I would not have it any other way.

A HUNKY CARER PLEASE

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.

OH PIGS BUM!!!!

These photographs are of myself and Mary-Grace at Dunstable Open Show. MG won Best Of Breed, Best Puppy (because she is still under one year old), and went on to win Utility Group 2 and Utility Puppy Group 1.  So it was a good day out.

Whilst my new medication, gabapentin, which I take on top of the other medication, is working very well, I have unfortunately got the fatigue and severe muscle weakness back. I have not had this book quite some time so I thought maybe it had gone.I should have known that it had not because the gabapentin is a nerve block and I cannot really see how a nerve block would work on muscle weakness/fatigue.

I am sleeping very well which of course does make a big difference but this week I have still had to have one to two hours sleep in the afternoon despite seven to eight hours at night. 

I have also been having bad dreams.  Mainly to do with my father and this morning when I awoke after a particularly bad one I was really in a grumpy mood and my gut was such that I had to go to the toilet six times in the two hours preceding waking! However, it settled down and my mood improved.

Apart from these hiccups things are very good right now and the show season is well and truly underway. I have a major championship show to attend on Sunday and then another one next Friday.  After that they come fast and furious.  However, I will not be attending the really long distance ones because I have not got anything old enough to make those treks worthwhile.

Last weekend was a four day weekend for John because of public holidays and this weekend is the same because of public holidays, including the Royal Wedding.  I wish Will / Kate well but I have no time for all the pomp and circumstance surrounding these young people.  It is amazing what we human beings do in order to create a fantasy.  These two people are no different from you and I.  The only difference is the way they are treated.I feel terribly sorry really for the Royal family because they have very little choice but be who they are.  Even if they resigned or abdicated or whatever and refused to play the game they would still have to have round-the-clock protection for the rest of their lives.  What a terrible thing to have done to people.  I really get annoyed with those people who can only see that they are rich as their envy does not allow them to see what truly terrible lives these people must lead. They can never be themselves and they must always play the game.  Just imagine if one of the poor sods was gay! What a hell of a life. Look what it did to Charles and Di.

HAPPY CHAPPY

Typically for me, I have been a bit concerned recently about how good I feel! I have been worried that the morphine and the gabapentin were altering my mood.

I did not take any last night nor did I take any this morning. Yet, once I was up I was talking to the dogs and generally feeling quite chirpy. I went to my swim which went very well and I sang in the car on the way home and I have been playing silly buggers with the dogs.

Clearly, I am just in my normal mood! This is my normal optimistic self. I am so used to feeling grumpy and exhausted and sore that I had forgotten that this was not my normal mood.

I am astonished just now strong the negative effects of not sleeping well are. I got so used to it and if I slept for three hours without waking I thought it was a good night.

My balance is not any better as proven to me yet again this morning. As I approached the poolside my balance went. I grabbed hold of the rail of the disabled person’s staircase into the pool and it moved and if it were not for the quick thinking of the lifeguard I would have fallen backwards and possibly smashed my head on the metal railings. Losing my balance is rather weird because it most often happens when I am stood still as I was this morning. It is like my balance just suddenly switches off.

I have also found that whilst I can do things more easily I still have the fatigue effects of activity even if I don’t have the associated pain. Getting dressed or undressed is not any easier so I avoid doing it!

I am so lucky to be living at this time with these drugs available. Before the likes of tramadol and gabapentin I would have just been on ever larger amounts of morphine and suffered all of its associated problems. Thank goodness for pharmacology!

I have also to sing the praises of my GP. Not only is she a very kind and caring person, but she is a palliative care expert. She has special qualifications in pain relief and regularly updates her knowledge by attending conferences. She therefore knows the best way of helping me.

I am realistic in that I have always known that no drug will have the effect of completely removing my problems. They reduce the severity of pain but they do not kill it completely. They also do not enable me to move as if I do not have a problem. It is not a good idea that anybody expect too much from medication.

The same applies to my heart. The three drugs I take for it work well in reducing the risks of my CHD but they do not cure it.

I know that there are other 24/7 pain sufferers who read this blog. Perhaps what I have written about the drugs will be helpful. What also helps me tremendously is my attitude. I am always aware that things could be very much worse for me. I know of other people who are worse than me. I also see others who are worse than me.

I live within the day only. I may plan for the future, like for example our trip to Paris at the end of May, but I do not allow my mind to live in the future or in the past. The only time I have to worry about is right now, this day, between waking and sleeping. Taking life in small doses is much easier to handle.

I certainly do not think about the progression of my disease but I also do not ignore it. I am not pretending that my disease is not progressive and that I will not get worse. What I am doing is not dwelling upon it. I cannot know the exact effects nor the exact timetable. If I think about the future in this regard all I am going to do is frighten myself. Instead I concentrate on now and all the good things in my life.

This may not apply to other 24/7 pain sufferers, but one of the reasons I find my physical problems so easy to deal with is that I am no longer in the psychic agony that I lived with for most of my life. I have found that physical pain is so much easier to deal with than emotional and spiritual pain.

Sometimes, pain in my body will make me yell because it is suddenly severe but most of the time it is background noise. I don’t really know how else to describe it. Sometimes that background noise is just loud enough to be heard and at other times it is like rap music being played at full volume. The most important thing to understand is that it is constant. There is no time off for good behaviour!

If you have ever exercised and afterwards your muscles have felt very sore and your joints have creaked, multiply that, and imagine it 24 hours a day, seven days a week, 52 weeks of the year.

So for you non-pain sufferers who read this, perhaps it will help you understand how those of us afflicted don’t always think clearly and are often not on an even keel emotionally. Therefore, we can react more strongly than is called for. In other words, we are more easily upset and more quick to anger. In simpler terms, I can be a grumpy overemotional bastard!

I am what I am!

I AM LEARNING!

The most difficult thing about my disease for me is learning to pace myself.  I have struggled with this for years.  I fight my body constantly, forcing myself to do things when I am exhausted.  Fatigue is the major problem not the pain.

Pain is dealt with by the medication really quite effectively, even though rarely 100%.  That is a minor gripe.  What the medication cannot do is deal with fatigue.

I have had a pretty good week.  I swam and walked on Monday.  I did neither on Tuesday the but I did do things in the house.  I swam and walked on Wednesday and Thursday although on Thursday I had to abandon my swim as I just could not do it.  Again, not through pain but through weakness.  I came home and I rested until it was time for me to go and do a talk and demonstration.

I knew that today would not be a good day physically.  I planned for it.  I didn’t actually have to do anything I just knew and accepted, which is the most important thing,  that I would be feeling today as if I had done a dog show yesterday.  I did not hurry away from the place where I did my talk and I did not hurry to bed when I got home.  I allowed myself to sit and unwind, eat a meal, watch some TV, and then go to bed. I did not set the alarm and I slept in.

I am doing nothing today other than what I have to do for the dogs.  I am not even knitting because I feel too weak.  Instead I am reading a book on my Kindle, The Curious Incident Of The Dog In The Night-Time, and farting about on Facebook.

This has resulted in me mentally feeling good. I am not feeling guilty for being lazy or for giving in to my disease.  I am taking care of myself.

I am not perfect and I know that I probably have not finished pushing myself but I consider this to be a major step forward in coming to terms with my situation.  I would never have believed that having a disease that caused 24/7 pain would produce challenges for me that have nothing to do with the pain itself! Like most people I am sure, I would have thought that the pain would be be major issue. As with everything else in life, it is my attitude that makes the difference.  Once again proving to me that what we think and believe is of the utmost importance because it affects our life in every way imaginable.

I really cannot think of a time previously that I have mentally prepared for the type of day I am having today.  I knew how I would feel today because I know my disease well and I mentally prepared for it.  Even when I do dog shows, and I know that I will be stuffed for two days following, I have still fought against it.  By not doing so today, I have relieved myself of unnecessary burden and so consequently I don’t feel miserable either.  I just physically feel buggered and that is okay because it will pass as long as I take care and rest.

It may seem elementary to most people and perhaps some reading this will be perplexed that I have taken so long to come to the obvious. We are complex beings and we all face different challenges.  Having this disease has helped me to see areas of myself that I have not even known were there and that still need work. It has also shown me strengths that I did not know that I had.  Tenacity being one, optimism, fortitude and the ability to push into the background the pain that could overwhelm.  This ability does of course have its negative side in that I can become unaware of the need for rest and medication. It is an ongoing education.

EARLY LOSS OF SPOONS

It was a very sunny and frosty morning.  I discovered that my new car does something else that is really good – it defrosts within seconds! I just pressed the button and the ice on the windscreen started to melt and we were soon on our way to the train station so John was not late.

After dropping John off at the station I drove to the swimming pool where I did my swim.  It went well but I felt like I was trying to move through treacle when I stopped and tried to get out of the pool.  By the time I got home I was feeling very weak and was not even up to knitting.  It seems my spoons just disappeared.  I had a two-hour nap and have fed the dogs now and am about to bath Whitney.

I have not been to a dog show since Leeds back in July and am now quite itching to go to one.  It is still a few more weeks before I have a show to go to.  I needed the rest.

John and I both go for our flu jabs this coming Saturday. We were supposed to go on October 16 but I completely forgot!

I have ordered some new yarn all Blue Faced Leicester-based yarns, with nylon, which silk and cashmere, with silk, with bamboo. I am looking forward to dyeing these.

Both of my Passap machines with motors have now gone.  Although my knitting room is not yet ready there is now plenty of room in it.  I still have setup with their motors a Brother 940 and a Silver Read fine gauge.  I had to make a decision about which machines to keep and I reluctantly came to the realisation that the Passaps were just too much for me to use now.  I also realise that I tend to prefer single bed sweaters nowadays and if I want to do Double Jacquard I can do it on the machines that I have. Along with this machinery has gone 25 sacks of yarn.  I still have loads left.

I am feeling much better about it all now that it is done and I am looking forward to getting to work on some knitting on the two machines I have left.

I have been reading about the Paleo Diet, how our ancestors used to eat.  I already eat this way but it was interesting to have an explanation for why I cannot handle grains, beans and potatoes. And why I was so ill and fat when I was a vegetarian for all of those years! Simply put, there are proteins in all of these which the body has trouble in breaking down and they irritate the stomach and gut lining causing inflammation.  Very probably I have not explained it properly but that was the general gist.

Years ago, I mentioned on the latest I was on which had absolutely nothing to do with food, how I felt all the time, how I was hungry all the time, how I had the shits all the time, and how lethargic I was.  I  had four responses and all for suggested the exact same thing; a low carb diet.  NO WAY!  I was vegetarian.  I ignored the advice until I really decided I had to do something or die.  I stopped being a vegetarian.  I cut out all grains and beans and potatoes.  I started to eat only fish and poultry and meat and vegetables.  As I was warned I felt terrible for the first few days.  I had not told John what I was doing and when I went to pick him up at the station that Friday after I had been on the diet for seven days, the first thing he said to me was ’you look really well what have you been up to?’ I told him.I lost 100lbs in weight and even though I do not always stick to it I have managed to keep it off.  My big temptations are ice cream and bread.  Bread really does my gut in.

This way of eating is not hard at all at home.  Preparing food is quick.  It is fast food! one can cook a really nutritious and healthy meal very quickly like within 10 minutes.  However, it is not quite so easy when away from home as all food suppliers seem to think that we all want pasta! Try buying a ready-made salad that is not stuffed full of pasta or potato! It really pisses me off. often one can find cooked chicken and if one is really pushed then just buy a Whopper or two and just eat the inside and throw the bun away. Nuts are a reasonable option as well.

IT’S ALL IN THE EYES

I am knitting a large swatch for an Aran sweater done on 2.25mm needles. It will take time of course but I have that. No point in knitting up a thick one when I don’t really wear thick ones.

My yarn dyeing is going well and selling well still.

On Sunday, I ordered two new Niddy Noddy ‘s and neither has yet arrived. I have just had a ‘shipped’ email for one of them. I hate crap service. I have ordered two (from different suppliers) because they are of different sizes and therefore will make hanks of different sizes and therefore I will be able to dye in more varied ways. That is the idea, anyway.

I am on my third book in the Power of Five series, Necropolis. I am enjoying these books very much and do not quite understand why they have been limited by being marketed purely as youth fiction. They are not written differently to fiction for adults so it seems that to limit them like this is doing no one any favours. Why must we label all the time?

I do rather enjoy House despite it being unbelievable. I think Hugh Laurie is very attractive in this which makes me wonder if I am on too many drugs. I can’t say I took any notice of him in that way before. I must say I cannot stand the character he is playing and he would be terrible relationship material but his unshaven appearance, those eyes and his tallness all appeal. Mind you, I often find that men improve with age. George Clooney was not what he is now when he was in that hospital comedy show years ago and yet by the time he was in ER and beyond, wow!

Quiet day today. Resting to make sure I am up to tonight’s demo in Bedford. Last evening, half thru drying Carly after her bath, I came over very weak and fatigued and could not complete her. Fortunately, she was almost done so she wasn’t left dripping wet. yet I had not felt so good in long time as I had on Monday, Tuesday and Wednesday, with swimming each day being relatively easy.

GOING WELL

My swim went very well today. I was lost in thought and swam more than my usual amount of laps. I know this because I kept my usual pace and when I stopped I had been swimming for 15 minutes longer than usual.

I have done more dyeing and plan to do some more today. I have found that even ‘just dyeing’ leaves me fatigued. I find the fatigue far more annoying to deal with than the pain. The pain I can handle, fatigue frustrates me. I do not like being hindered. Bugger all I can do about it.

I have had nice emails from people who received yarn from and have used it. Phew!

How about those arrogant *)(&^% people trying to take children from Haiti? Honestly, and people wonder why Fundy Xtians have a bad reputation. How dare they? Well, at least they have been stopped and have discovered that being American and a ‘Xtian’ doesn’t give them carte blanche to do as they wish.

THIS, THAT AND A BIT OF THE OTHER

WEIRD

Well, I did remember my blood test which I had this morning. I had 3 people remind me by email and one by text message. As I know I have more than 4 readers, I gather the rest of you have the same C.R.A.F.T. condition as I!!!

I did my swim and all was well until I got back from the surgery. My plug got pulled and I couldn't even knit I was so weak. I went to bed but couldn't sleep. (Spell Check thinks couldn't isn't a word!) I feel better now and my hands don't feel like they weigh a tonne with sausages for fingers.

I say all was well with my swim, by which I mean I was able to do it, and enjoy it, though my hips weren't(spell check thinks that isn't a word too) that keen on it and my left hand went pins and needles and then numb again. It does that frequently and I assume it is because of the crumbling discs in my spine. You'd be amazed at where those discs cause problems. Maybe though you would not be as I am sure that you all know your nerves are in the spine!

KNITTING

I am really into it right now. Okay, so I always am but I am sure you have noticed I am doing much more machine knitting too. I have that feeling again, the urge to create with the wonderful yarns I have.I might even be kidding myself that I can knit it all. Given time, Yes, about 300 years worth. (Why does spell check think abotu is a word? Is it?)

READING

I have a tonne of books to read too. I am having to resist the urge to buy those books I see that I am sure I will like because I must have about 2 years worth of reading already. Mmmm, does this sound familiar?

I am reading RAVEN'S GATE by Anthony Horowitz right now and am enjoying it. I think it is aimed at the teenage reader so I am enjoying it very much. Not at all patronizing or childish. I have tried re reading the Narnia books but they are childish.

PUPPIES

Are almost lead trained. They do walk on the lead well but they still stop and especially so when they see people or traffic. Little Dorrit squares up to the cars as if daring them, whilst James , Dudley and Carly all back away. I have to take them out one at a time for training as they much learn to stand on their own feet. Most importantly, they are not freaked by the outside world and not so stubborn, as Apso are prone to be, that they fight the lead. I always start training at 8 weeks on the day. I get pissed off with some I meet at shows with a puppy of 6 months or more and they boast it has never been on a lead! Shows little care for the poor puppy I think, expecting it to go a lead for the first time in such a situation. Then they wonder why it freaks. Too many of them, adults too, only ever go out when they attend a show. Apart from that, they are kept confined indoors, some of them in cages where they are kept most of their time and never even get to play with each other. They get taken out to the garden, one at a time, to pee and poo and str8 back to the cage or pen.Never mind how cruel that is, why have the dogs if that is how you keep them? What is the point?

I often think that people who keep their dogs like this miss out on so much. When I get down on the floor with my dogs and pups, we have so much fun! When I go to bed, I always have a dog with me. When I am watching TV or knitting or reading, the dogs are around me. They are confined when I am not in and at night time, for their own safety. I do not go out all day unless I have a dog sitter, I will not keep them in their cages that long. I wish I could say that all my fellow exhibitors / breeders treated their charges the same way but alas they don't. To some they are a means to an end and that is it. A spotless house always is a warning to me of a poor life for dogs. I certainly would not entertain the idea of one of my dogs going to live like that.

All of my dogs play and run around in the garden. They play with each other, with me, with visitors. I have made concessions that don't affect the dog: I have fenced off all the hedging so they cannot get into it and wreck their coats. Other than that, they do as they please. My way of thinking is that if they can't get a floor length coat living a normal life, then they have the wrong type of coat for an Apso in the first place! These are hardy, tough dogs from 16000 feet above sea level, in the Himalayas, Tibet. They are not toy lap dogs. (not that there is anything wrong with Toy breeds just that the Apso is not one.)

BY JOVE, I THINK I'VE GOT IT

Well, today turned out crap and it's my fault. I think that I have finally figured out how to handle myself though. Or more precisely, to recognize what my body is feeling and what it means. I am learning it's language and it isn't what I thought it was. It doesn't just speak pain which I understand. It also speaks fatigue which I find harder to understand so bright spark here thought it was best ignored. My body won't be ignored so I end up paying the piper as it were.

To back track a little, I realised that I had not been using my light box. This explained the low feeling and the sugar cravings. I had forgotten that lack of light does not just make one feel low but also cravings for sugar/carbs. (This is not New Age hokum but real established scientific fact. Look up S.A.D. or Light Box and the information will be yours for the reading.) So I started to use the lightbox again. I sit in front of it for 30 minutes each morning.I knit my socks whilst doing so. I feel better.

Okay, so I have seen the light. Now I need to make sure I take the night time slow release Tramadol because it works and I have come to know how important it is to sleep as well as I can. Day one goes rather well, except for pain when swimming. I had only taken paracetamol. Not enough. That night, the right pills, the next morning paracetamol and Tramadol and the light box. I feel GOOD. I have my nap. I take another dose of pills. (Still nowhere near the 8 of each a day I can take.)

Last night the dogs and puppies were all in bed by 9.30pm and I by 10pm. I read and much to my surprise I fell asleep by 10:30pm. This is going good is it not?

It seems not. I awoke at 5am ready to get up as usual. Except I felt like I had been hit by a truck. I felt weary and heavy. Did I lay in and forego swimming? Of course I did not. I made myself get up, told myself not to be so lazy. "You'll feel better once you are up and moving. Splash cold water on your face." (oh where have I heard all this before?)

I take pills, deal with puppies, let them out to play, clean up after them, feed them. Let adults out. Sit and have coffee, knit some sock, wait for pills to make me feel better. They didn't. I did think about not swimming. I convinced myself that as I was up I might as well go and besides I'd wake up properly after the swim. I did swear to myself that I would only swim half of my usual amount.

I arrive at the pool, said my good mornings, changed and got into the pool. I started to swim. "See," I told myself, " you feel better already." My body let me kid myself for about 4 laps. I began to get slower. I conceded I should only do breast stroke. That should work.

My body thought otherwise and it pulled the plug on me. Yes. Finito. End of energy. No slow swimming. NO SWIMMING AT ALL. STOP NOW. I WILL NOT DO THIS. And you know what? It didn't do any more no matter what I said.

I was able to get out and change and come home without feeling guilty because I had done my best and really just couldn't do it. I had to post something so I got dressed and went and posted it. By the time I returned I was feeling ill, nauseous.

I ended up in bed and slept for two hours.

I am well aware as I write this how badly I have been treating myself. I am all too aware of old voices still calling the tune. Honestly, if I read this was how a child, or even an adult come to think of it, was being treated by someone else, I'd be angry. I'd call it bullying.

I had no idea that learning to take care of myself would be so hard. I had no idea that even when we think we have erased every last one of them, old tapes make themselves known.

For now, I think Wednesday will be my day off. Saturday too. I shall then see how I feel. I will try to remember that when I awake feeling hungover like a truck hit me, stop!

Keeping Up

SWIMMING

I discovered while away just how important the swimming is to my well being. My last swim was the Thursday before we left on the Sunday. By the Sunday evening I could barely move my neck and it hurt. Drugs took the pain away but not the stiffness. By the next day, my top half was barely mobile and John, a she had done the evening previously, had to help me dress an undress my top half. This stiffness remained with me until we returned and I started up my swimming again. I had to start off gently, only 40 laps the first day, none the next, 40 each of the next 2 days and rest 2 days and now back to daily 64 laps.

LIMITATION

I find the pain side of my problems fairly easy to deal with. I take drugs for the pain when it is too much.

What I dislike more than anything is not being able to do as I used to. I used to be able to machine knit a sweater and sew it up all in a day. Not any more. Not even with a motor on the machine.

I used to drive to my friend's in Denmark from my home, 800 plus miles, over night. No way could I do that now. I drove from Mannheim to Calais on the Sunday, heading home. It is 450 miles. I thought that would be okay. I had been sleeping very well and we had all day to do the journey, no need to hurry. We did the trip in about 10 hours, with plenty of rest stops. I was tired when we got to the hotel, which was normal. The next day though I was in much pain, which the drugs took care of, and weak. I was too weak to wheel myself around in my wheelchair. Now that pisses me off. I of course did push myself as much as I could as we spent much of the day in Cite Europe which has smooth floors. My arms though prevented me doing much and John had to push for much of the day. We returned to the hotel fairly early and I slept.
I am well aware I am lucky, my condition could be much worse but this fatigue thing is something I have yet to come to terms with. I still plan and do things forgetting that I won't be able to or that if I do I shall be really ill.

Dog shows take much planning and I need at least 48 hours to recover from one. I also need 48 hours to prepare for one as there is much driving involved and then there is the show itself. I manage them well and so far have not overdone things before a show thus preventing myself going.

The point is, one would think that pain would be the worst thing. It isn't. It is the fatigue because that puts limits on me in ways I do not like. And fatigue is not that easy to deal with because I don't always find it easy to tell if I am feeling lazy or am tired. Plus it prevents me from doing what I want and that is really annoying!

Guantanamo Bay

After yesterday's shorter swim(64 laps), I did little else. I took the puppies to be microchipped. The man who does it is so good at it. The pups didn't complain at all. Never do with him doing it. And it is not a thin needle that goes in. More like a canula. I had my 2 hr nap before I went.

I did little else for the rest of the day. Some sock knitting, almost finished sewing up the sweater. I watched Jodie Foster in The Brave One along with Terrence Howard who is an excellent actor. Very expressive face. Looks like a man who really feels. I actually watched this film without doing anything else. About half way thru I took pain meds. When it was done I watched Rendition with Meryl Streep and Jake Gyllnhaal.

I found both films to be disturbing and both brought up conflicting emotions. Horror at torture and revenge and also an element of satisfaction at the baddies getting done. Disturbing.

Rendition is the most disturbing really because it shows how we in the West have lost our credibility as democracies who champion freedom. Guantanamo Bay and the practice of rendition are both appalling and to me show that the terrorists already won. or that we were never what we were told USA can justify it is beyond me. How the UK and the rest can sanction it is also beyond me. Such hypocrisy. Such evil. Oh, but anything to stop the Muslims right? Forget democracy, freedom, integrity, morality, right? We have a war to win. Trouble is it isn't so easy to see who the good guys are any more. The whole lot make me sick. Oh and it will get worse, much worse. Oil is running low. Watch out, we will soon see just how democratic and free we are. (And thankfully I do not suffer from Patriotism so I can say what I think and not have it used to silence me.)

Okay so I did not set the alarm for 5.30am this morning. I woke up at 5.30 am anyway. I then dosed till 6.45am. It was hard to not get up to go swim. I have a busy day. Bathing dogs and taking the pups to show the stud owner. I think that will just about wipe me out for another day.

I am sure I have said before, it isn't pain that bothers me so much as not being able to do all I want to do and getting tired so easily. It really p's me off. It is so frustrating. Fortunately those closest to me understand my limitations and I don't bother with the rest. Explanation is a waste of time and I don't see I need to anyway. I am aware to look at me doesn't tell you anything. I am so good at disassociating I can be in quite severe pain and you wouldn't know. because it wouldn't show. However, if I was fatigued then you would know! I tend to pale and become very vague and my speech turns to mush.

Another bright and sunny day and like yesterday, not so hot and humid.

Weary

I have done nothing all day. Oh, apart from pick up dog do and little sock knitting. I was right yesterday to decide that today was rest day. I went back to bed at 11am at got up at 1pm. If it were not for the dogs, I'd be back in bed again now. I feel so weary. I HATE days like today. I tell you fatigue is far worse than pain to deal with. I have little pain today. But with pain I can minimise it with drugs and putting my mind to something else. Like I have said, I am good at disassociating. Fatigue cannot be dealt with. At least I don;t know how to. I know it will go on its own. When it decides to. It really does not seem related to anything I do. I can be very active for days at a time, in pain, and I get tired. This is not tired. this is fatigue. There is a difference though I can't really explain it. Sleep doesn't alleviate it. It feels as if one is moving through thick air all the time, like someone added weights to my arms and legs. Even knitting has been an effort and I have put it down to just watch tv. Highly unusual for me. Even the small movements required to knit are too much effort and typing this , my hands feel heavy. Weird.

Five weeks from today, John and I will arrive at out friends' home, Lia and Lui, in Sandhausen (near Mannheim) Germany. I am really looking forward to that. We leave here on the 17th, staying in Dinant, in the Ardenne region of Belgium on that night and driving the rest of the way the following day.