skip to main |
skip to sidebar
I am not always accepting and stoic with regard to my disease as I am sure the intelligent amongst real will have realised. I am just not a moaner, at least not always!
In truth I spend a lot of time battling against my disease and not accepting its limitations. It is not always easy to know when it is right to push myself and when it is not pushing myself but lack of acceptance.
I swim. I love to swim. In the water I am free. I am not completely pain free but I am very mobile, I swim very well, and I just love it. I force myself to swim even when I do not feel like it. This is the good kind of tenacity because swimming is good for my body and my disease. It keeps me mobile, keeps my weight down, list my mood, and probably delays the progression of my disease.
There are other times when my battle is pointless. It is me refusing to accept that I cannot do something and thus causing myself more grief in the process.
Today I was meant to be going to a breed club open show. I was all packed and ready to go. The two dogs I was taking were bathed.
However, I was still awake 1 o'clock. I was awake at 3 o'clock. My gut was not good and twice I had to go to the bathroom. By the time the alarm went off at 6 AM, which was really 5 AM as far as my body was concerned as our clocks went forward last night, I had just under three hours sleep and that was fitful and not deep. I still insisted that I would attend the show. I left. Common sense ruled and I turned round and came back home and went back to bed feeling very sorry for myself.
I am very disappointed that I was unable to attend. I am particularly upset because I really wanted to support the young man whose first breed club appointment this was. I believe this man has talent for judging as is evidenced by the fact that so many of his winners at open shows have gone on to be placed in the puppy and adult groups at the same shows.
It is times like this when I know that the only sensible thing for me to do is accept that my disease will not allow me to do something.
Had today just been an ordinary show I don't think I would've got into such a tiz about it but I had agreed to support the judge and I felt really bad for not fulfilling that. I have to say that at the time I made the agreement I did not know that the show was three hours away from me and even when I did find out I pretended it would not matter. It would not have mattered had I had my sleeping drugs.
It still amazes me that there are people that consider me able bodied just because I am not paralysed! Never mind what I have described above in the way of preparing to just go to a bloody dog show that I have left out the difficulty in getting dressed and the inordinate amount of time it takes! No, no able-bodied person goes through this just to appear normal! (I was about to say how many people do you know who put an overcoat on over their pyjamas to go to the supermarket because they cannot get dressed that day and then I remembered all those photographs I get sent via email about Walmart shoppers!)
Only yesterday I was talking with a friend about driving to Poland because I would like to visit Warsaw. I was talking as if I was perfectly able to do this. The days of me being able to drive long distances like that are over. Yet every year I still make plans to drive to cities over 1000 miles away only to petulantly accept that I am unable to drive that far. Oh, I can drive that far but in three days not overnight like I used to. So it would take me three days to drive there, I would need at least five days there the first two of which would be recovery days, and then I would need another three days at least to drive back. This is unreasonable and although I am not happy I accept that this is unreasonable and so I do not do it.
The most obvious thing that people say to me is well why don't you fly. The simple reason being I have to take far too much stuff with me including my electric wheelchair that flying is completely impractical.
Normally I take sleeping pills the night before the show. the sleeping pills are not kept in the house, John keeps them in London. No not because he is afraid I will overdose on them. I asked him to keep them for me because it would be too easy for me to take them when I'm having difficult nights which are frequent. My dog shows are extremely important to me and without sleeping pills I would not be able to go to them. To me therefore it is imperative that I only use them for that purpose. It is too tempting to have them at my fingertips. they used to sit in my drugs draw And I only ever used them for dog shows. However, as my disease has progressed and painful disturbed nights have become much more frequent, I found I went to my drawer and got my pills even when I had no dog show the following day. I knew then that I had to not have my drugs at home.
This is the alpaca sweater i am knitting for my self in a simple knit/purl check. I am using two ends of Drops alpaca on 4mm needles. I am using Lantern Moon Ebony Circulars.
This is John's aran sweater. I am using 5mm Lantern Moon Ebony circulars. The yarn is Cascade 200 and the design is my own.
This is another pair of socks for me. I am using Karbonz in 2.25mm size. the yarn is by Wendy and it just caught my eye. I am going to knit this a s a tube sock.
I am pretty sick at the moment and have been since Cruft's back on the 8th. I expected to feel really bad the two days after the show but that feeling didn't lift and I gradually got worse and worse until finally I developed a fever (tho now I think I had one a lot sooner than i realised) and difficulty breathing. I had been taking more and more pain killers because my joints were on fire and I was hurting much more. Anyway, I finally went to the Dr today and I had a temp of 38c and a chest infection for which I now have anti-biotics. I should have gone last week of course but didn't want to make a fuss!
I thought I was okay when I woke up, having slept well. As the hours have passed, I have become aware that I don't feel okay at all. I feel afraid today. What of I am not sure. The future? How my disease is progressing?
The last few weeks have been emotionally charged. The build up to Cruft's which I dreaded attending and then really enjoyed. Mary-Grace did very well too. The recovery from it. Trying to make peace within myself with regard to someone who hurt me deeply. Not sure I can. Yet I hate discord with people. If I were not going to see them again it wouldn't matter I suppose but I am likely to and it is preferable for me that I feel okay about it. I made a move in that direction which seems to have had a positive result but I find my feelings toward them are not resolved. In time they will be. There is a part of me that doesn't want to give the impression I have forgotten and all is well. There will never be trust there. It isn't about dislike or ill feeling. It's about trust. I don't trust them and never will. Can I live with that and still be friendly?
We are still in the process of getting the house sorted out. I think we have come to accept that we will never be clutter free. Given that, there is still stuff to be done. A tonne of rubbish to be removed to the tip. This is when I get frustrated. I can't do any of this on my own. It only gets done during the four days John is here and there is a limit to what he can manage too.
I still struggle with misplaced guilt. Feeling guilty that we are in such a fortunate position now. Enjoying what we have and our financial freedom. The difference is that I know it is misplaced or more to the point, is unnecessary as misplaced suggests I should be feeling guilty about something else. I was brought up to feel guilty. I was programmed, deliberately, to feel guilty. I have come a long long way from those dark days but as I have written and said a hundred times, more probably, the remnants of those days still haunt one. There is no 100% recovery. There is so end point, no destination, only a progression, a growing toward, no arrival. If I think about that, it is really obvious. An end point? A time when growth stops? No more learning? That sounds like stagnation to me. Death even.
Perhaps I can grow beyond feeling guilt and shame when I am in a dip and just accept it is part of life, part of our learning, part of the process of knowing. I have more or less stopped feeling guilt and shame with regard to my physical problems. Juts the mere fact of being in pain made me feel ashamed and thus I went untreated and unknowing for so many years. Even since my diagnosis back in '04, and my accepting pain medication in 07, I have had strong feelings of both not just about the pain itself about the medications. Guilt because I must have done something to cause this and guilt over using drugs to help me. Shame for being weak and not good enough to overcome this myself. (Guilt is about what we do and shame is about who we are.)
My stomach has settled somewhat since I started to write. I never know what I shall write until I start to write. I note how frequently I express fear, guilt and shame. This is not surprising. All abuse survivors will know these feelings intimately. A moment here to explain that there was a time I did not know these feelings because i had locked them all away. When people spoke to me about them, I had no idea what they meant. In self help groups people would talk about their feelings. Some would show their feelings and I would be horrified and feel such a fraud because I did not feel like that. in fact there were those who indeed thought I was a fraud too because I did not share these feelings. What I did not know, and what these people did not know, was that I was numb. I was so terrified of my feelings, of experiencing what had been done to me, I had disassociated completely. Thus I was able to relate a horror that had been done to me with no emotion. this is the danger of self help groups. there will always be people in them who think they 'know' and they are a danger to the weak and vulnerable, like me. Inevitably they come across someone like me and I am outside their 'knowing' so they dismiss those like me as frauds or 'too sick to help'. I guess this attitude is part of their damage too. I only know that for me, it heaped more damaged upon me and had me barking up the wrong tree for the recovery I was so desperate to achieve.
I received the best compliment I could have received recently. My long time friend, longer even than John, said to me that she did not know anyone, not one person, who had wanted recovery more than i did, who had fought for it harder than I did, and who had succeeded as much as I have. See, she knew me back when I was 20. She has also known many many damaged people throughout her life and so I took her words as the compliment they are. I often wish I wish I could show those who read me, who are still struggling deeply, the frightened very damaged boy i sued to be. i cannot do that. I can only share with you my life today and my memories and my thoughts and I hope I do it honestly enough that it gives hope.
We have just spent 90 minutes watching a woman called Jeanne Robertson, a 'humourist' from North carolina. She was very funny. Gentle humour without any rude bits at all. I love the accent. I have no problem with rude humour but I really like this woman too.
I am knackered. I am off to bed. I had a good physio session today. I was a good boy and didn't just swim, I did what the hospital told me to do and did these weird exercises involving my legs and groin which when I was first shown I thought to myself 'are they taking the piss or what? These are really easy. I not a cripple for goodness sake (well actually it was for f*cks sake).' It turns out they knew what they were talking about after all which i suppose since they have medical degrees and I have no education past 15 is not too surprising. These exercises are bloody hard to do and thank goodness I get to do them in the water and not on land cos if they were on land, i'd fall over on the concrete and that would really not be good. Quick thinking, Batman. I suppose a medical degree is useful after all. I have no idea if the physio works or not but it hurts. That either means it is working or that they don't like me.
Well, early in the morning a man is coming around to fill my hole. I have been meaning to have it filled ever since we moved in here, 14 years ago. Now finally, I found the right man to do it. I had asked Ernie the builder but I guess Ernie the builder didn't care very much for filling my hole as he never did get around to doing it. Well, it has to be done because on windy days the wind comes right through and it is really noisy. It can be quite scary and even the dogs move away from it and turn and stare at it. So finally, my hole is being filled and this should not just stop the wind problem but also prevent the heat escaping too. The coal and then the natural gas fire that used to fill my hole is no longer there, hence the hole. It really isn't necessary for it to be there and when I think about it, 14 years with it unfilled is just,well, unthinkably unthinkable. So tomorrow a man named Howard is going to fill it and we shall leave him to do it in private because of the next paragraph.
I feel like going out tomorrow so we shall. We will our usual exciting trip to John Lewis where the staff know us so well it's a wonder they haven't stuck 'sale' stickers on us. As odd as it may seem, i find it de-stressing to just wheel around the mall and looking at stuff. i look at stuff I am never going to buy. I am always taken aback, every time, at just how big some bras are. Blimey! I had no idea boobs came in that size. I see some very nice hand bags which I ponder upon but decide I like my balls and I really am not going to get rid of them just because I love that orange hand-bag. Women are so lucky with the variety of stuff they
can wear.
I am trying to persuade Joh to have swap our 40" for a 46". I have told him that now we have an electric bed, we can have the 40" on the wall opposite the bed. We can watch DVDs in bed and be situated just right to do so. You see, we replaced a very expensive Blu-Ray player for another very expensive Blu-Ray player (both 3D too). We have one very expensive BD player under the settee. I have told him that really is a waste of a very expensive BD player and wouldn't it make more sense to buy another very expensive tv, this 46" one, to put on the wall in the lounge and move the 40" one that is presently there, upstairs to the bedroom where we can then use to watch the very expensive BD player that is going to waste under the settee? Doesn't that make sense to you? It does to me.
I went to Crufts yesterday. On the Wednesday I was absolutely dreading going and I really thought that I might not. I just could not face the idea of having to put on the show persona that I do in order to make the shows doable.
Yet after my swim on Thursday morning I came home and within about 10 minutes I had come up with my outfit for the show. This enabled me to contemplate actually attending.
I showed Mary-Grace. It was a very difficult decision even to enter Crufts in the first place. If I did not enter I would have hurt a dear friend and I would have given in to the nasty aspect of the dog came. Yet by entering, if Mary Grace did well, then this nasty element would be thrilled to bits to have something they can bitch about and make themselves feel happier by putting both me and the judge down.
When Mary-Grace one limit bitch I was completely shocked. In fact I did not realise that I had one I thought that the judge had just picked out the first cut. It was the steward who told me that Mary Grace had been placed first. So if you were at the show and you are reading this now you know why my face look the way it did and why I did not have a big grin on my face!
The open bitch winner was absolutely gorgeous and in full bloom and I knew that Mary-Grace would not win the bitch ticket. In fact I was not expecting anything else at all. So when Mrs Cain came up to me to present Mary-Grace with the reserve bitch ticket I was once again shocked. Of course I was absolutely delighted.
It was an incredibly long day. I think I did not get into the ring until 4 PM and I had been up since 2 AM and at the shows since 6 AM.
It was lovely to meet so many people and have so many people come up and introduce themselves to me because they are friends on Facebook or just because they had heard of me and they wanted to wish me well. It was also a delight to have the owners of one of the boys out of my present litter watch me in the ring and of course see me win.
I got home about 8 PM in absolutely vile foggy weather. I went to bed soon after and I got up at midday and of course I feel as though I have been run over by a truck. I got through yesterday with much more medication than I would normally take, which is allowed by my doctor because she knows that dog shows are an integral part of my quality-of-life. Today will probably be just an ordinary day as regards the amount of medication.
I have deliberately not named any of the friends that I met some of whom I have not seen for a long time. I will not mention any people by name because I'm bound to leave some out and I do not wish to hurt anybody's feelings. You know what my memory is like!
Mary-Grace is for me the ideal Lhasa Apso. She is feminine yet sturdy. She is very well angulated without exaggeration. She covers the ground effortlessly and with the economy of movement needed in their natural environment of the Himalayan mountains. Her skull is moderately narrow rather than the moderately broad that many seem to prefer and her nose is half the length of her skull. Meaning that her nose is one third of the length from the tip of nose to the occiput. Now that covers her qualities as a show dog but she surpasses all of that with her most delightful personality. She is incredibly affectionate and she is very smart. She is not the easiest of dogs when it comes to other dogs and she does not back down easily once she decides that she will dominate another! Some puppies she adores and other puppies she does not and we have absolutely no idea what makes the difference! She is very typically weird as all Lhasa Apso are!
I have the puppies to vaccinate today at 4pm. I am lucky that I have a vet who is a personal friend, Cere Vidal. She is lovely. Dumbo here did not realise that when she left the local practice she had moved to an independent surgery just 20m away. I only found this out when we spent the day together recently and had lunch in the place we had our wedding dinner. So now she is who I go to. She is Spanish. It is one of those occasions I really wish my mum had brought us up bi-lingual. Cere speaks excellent English it just reminds me that i missed out on another language. I have no aptitude for languages as an adult. I've tried.
I fell asleep last night right here in my computer chair. My balance was terrible last night too. It seems okay this morning.
The sun is shining and I have plenty to do today. Nothing I have to do except go to the vet. So I think I shall design and set up DAK8 on the new PC. I have to say that I really quite impressed with W8. I have had no trouble with it. the Samsung PC is easy to use. It is touch screen and mouse controlled. Easy to find stuff.
I am not going to lie and say I feel on top form today. I don't. It is just these days though that the mental work I have done, the positivity, comes into play. In the past days like to day would have been spent miserable and in bed or raiding the fridge. Instead, I accept today is not my best, do what i can do, like play with the PC and knit. Keeping in mind that this will not last and that there are those far worse off.
This isn't mental gymnastics. Nor is it denial or whistling in the dark. it's true. YOU decide what to dwell upon. What you dwell upon tends to grow. So if I dwell on my body and how unfair it is that I have this damn disease the result will be misery and a person not fun to bea around. So instead I dwell upon the truth: I have a wonderful husband, my dogs, good friends, the ability to use my mind, my creativity-I can hand paint yarn when i physically can-I can knit, I can read. i have so many interests and not enough hours each day. (I could dwell upon how I can't do all I want to do).
So you see, it isn't lying to one's self nor is it a mental game or trickery. It's the truth. you can decide what to dwell upon. the negative of the positive. It isn't what soem New Age guru's cruelly teach people-that they can cure their disease by thought and either overtly or covertly blame people for their diseases. no. This is dealing with what actually is and deciding which of the two choices-negative or positive-we will choose at any given time. Choosing the positive will make your life easier. it won;t make you rich and it won't cure you of all your ills. It will just make you happy despite the crap. (I know a person who always thinks on the negative. She always moans and it is always her so hard done by and nothing is ever her fault, always others. Well, within a year of being diagnosed with the same disease, she is permanently in a wheelchair and totally dependent and still blaming everyone and still moaning. Perhaps a change in attitude would have made no difference to the progression of her disease but it most certainly would have made her and those around her happier.)
I have noticed that those who complain about horrible people are in the dog game are usually those who are the reason! You know what I mean. Those who complain about the gossip and the back stabbing. They are usually right in the centre of it. That doesn't mean i don't think they are genuinely upset by it. I think they just don't see how they create the bad atmosphere that they complain about. There is a couple that both John and I have been polite and friendly to. they don';t know us because they have never been polite enough to respond in anything but the most perfunctory way. Yet I know, for a very brief conversation, that they too complain about how mean people are yet they themselves are hardly friendly, all but ignoring John and only just managing to respond if I say Good Morning. Why do people do this? Don't they realise we all feel the same way? we can feel hurt. we all can feel mistrust. What if we stopped the crap, looked at ourselves and saw just how we contribute to it? I know that for myself, I have reigned in my attempts at friendliness and openness. i wrote a letter of support to someone and it was interpreted in the most negative of ways and I was made out to be the villain yet it was the person themselves who carried the venom not me. So now I don't even try to encourage or support or compliment. However, i will NOT allow myself to become brittle and unfriendly. Will you? Do we want a dog world like this? Do we want to use FB for back stabbing? Do we want to use it as just another way of being cruel and mean spirited? The under hand remarks made about Deita and why she won. Stupid. they come from a place of jealousy. far better to put your energy into breeding a quality dog so that you too can enjoy the wins and have to listen to people like you deride every win! Those that forever bleat on about the crookedness and unfairness are not seen as paragons of virtue by others. no we see you as bitter and twisted especially when you show inferior dogs to boot! (This is where they won't even see themselves!) I know that I have a good friend in someone who, were the gossips to be believed, is nasty egomaniac. i now know this not to be true and I am embarrassed to have let it get to me in the first place. Not that i am alone. I am not how others were led to believe either. As you can see from my very open views of my home and dogs, they are not stacked in cages to the ceiling and I do not breed many litters every year. These two things were spread about 'virtuous' people and were the reason I was kicked out of a breed club. Don't be daft, of course no one apologised! They have just looked for other reasons to do me down. The baffling thing is that these people believe they are the virtuous ones. seriously. It is they who complain about mean people are. They don't see their own behaviour . I had put it all behind me and did my best to be befriend and kind and friendly. That was a mistake for which i was punished and a lesson I have learned. some people are just mean spirited and nothing I do will alter that.
No we cannot change others. That leaves us with the most powerful tool at our disposal. We change ourselves. Yes. We make sure that we do not add to the shit. Never repeat anything we are told by another about another and never believe it either! don't rubbish a dog you have never been over. Don't rubbish a dog you have been over and if you are a judge you most certainly ought not be talking about those dogs you have had the privilege of going over unless it is in positive terms. It is childish to refuse to speak to people. A polite Good Morning is all that is required. It gets really stupid to have load of people sitting around not talking to each other!
If we want our hobby, (it's a hobby, we are not searching for the cure to cancer) to be a happy enjoyable one, then we have to make it one. yes, i know it's hard to be nice and friendly to people you know do you down at every opportunity they get. Ironically, if we don't continue to be who we are, they win and we become who they say we are! If who you are is suspicious, distrusting, cynical, then perhaps you ought not be int he game or you need to put some serious effort into personal change.
Oh, I know that none of the above is going to make going to make going to shows a blissful experience! Of course not. Most will dismiss this as the ramblings of a wanker. That's okay. I know from experience though, through listening, that there are people who are very decent and nice people and they suffer as the result of this atmosphere. THEY don't have to. By refusing to let others dictate how they behave or react, they can take control of their own selves and come to find the shows enjoyable despite those who would have it otherwise.
It does the breed harm in the long run. New people are not welcomed. Good breeders are afraid of being stung. Judges take any questions about their judging as criticism and are very defensive so people don't bother to ask questions. Another avenue of learning blocked. The knowledge of the successful long term breeders is blocked because they are rubbished by those around for a year or two who think they know it all. Vicious campaigns of lies started by those who think their pets ought to win and think they don't because of who they are instead of recognising that their dog is not quality enough to win.
There IS judging that is crooked or ignorant. This game involves humans. they are still in the minority.
No one is suggesting that we look only though rose coloured glasses at the game. No. Only that we look to ourselves, our own behaviour, our own attitude and ask ourselves how we contribute to this game. Is it negative or positive? It's quite easy. ask yourself if this is positive or negative: I am not speaking to him, because so and so said he doesn't like my dog. I am not speaking to them because they didn't place my dog. It doesn't take much looking at to find the answer.
None of us is perfect, no, but not all of us are mean of spirit either. And yes, some of us when hurt, contribute in negative ways which we are not aware of and would be ashamed if we were.
Well, that is my ramblings on this subject. It was triggered by the fact that I hear so often about how 'awful' people in our breed are and the realisation that those saying this contribute to the awfulness! It is always someone else's fault. well, no its' not. We each create the atmosphere under which we show our dogs. So the responsibility is ours.
I wake up and not for the first time. This time I decide that I have had enough of trying to get comfortable. I shuffle over to the side of the bed so that I can reach my sidetable wear I find my drugs.
In a small tray lays 800 mg of gabapentin, 20 mg of morphine, 100 mg of tramadol, 500 mg of paracetamol, 75 mg of aspirin, 25 mg of atenolol, and 200 mg of colofac.
If I manage to get the drugs out of the tray and into my hand without spilling any I swallow them all in one go with a sugarfree drink out of a bottle. Never water because my mouth tastes like the bottom of a bird tray.
I then have to wait at least 40 minutes before I feel capable of getting out of bed. Before we got our electric bed, I would shuffle myself to the side of the bed and then allow myself to fall out of bed so that I fell onto my knees. I would then use the radiator and the bed to support myself as I got up onto my feet. Now with the electric bed I press the button until the back support has risen to almost vertical. I then move my legs until they fall down the side of the bed. I shuffle along a couple of feet on my bum and then I press another button which raises the part which I am sat on until I raised so much that I am standing. Using the wall for support I put on my slippers and grab my walking stick. I'm now ready to go downstairs. I take the stairs slowly and the two dogs that sleep with me wait patiently at the top of the stairs until they know it is safe for them to come down as well.
I can now manage to let the dogs out and make myself a coffee. I take my coffee and I go and sit at the computer. During my time at the computer the effect of the drugs increases and I then feel able to do more demanding jobs such as getting myself a meal.
What I have described above is an ordinary day and you will note that I have not included showering nor dressing. Only on a very good day can I do either of these things without help.
On a swimming day, I will add 20 mg of oxycodone or another 20 mg of morphine to my morning dose. This will enable me to get to the pool to take off my pyjamas put on my swimming trunks and swim. After my swim I can barely walk. However I have a nice large room kitted out for the disabled and using the hoists and supports and the bed I can manage to shower and put my pyjamas back on. What I cannot do is dry myself completely as I cannot dry my back so I invariably and putting pyjamas on a wet body.
On a bad day, I will not be able to get out of bed at all without doubling or tripling the amount of morphine. I most certainly would not be able to dress or wash.
On a dog show day, I have two get up to and a half hours before I need to leave. My clothes have all been set out the day before. The day before the amount of painkiller I use is increased and I also take a large dose of sleeping pill. I then go through the usual process of getting myself ready. Although I do of course automatically increase the amount of drug I take first thing, I am sure that the adrenaline that has begun to course through my body helps me do what it is I must.
By the time I have arrived at the show I am of course in a lot of pain because of the drive. However as I am usually the first person to arrive I have plenty of time to take more drugs and to wait for them to take effect. I then find where I need to be and I take all of my stuff and my dogs to that place using a trolley which is now electrified so that I do not have to push it.
I sit at ringside all day until it is time for me to show my dog. With any luck I will not be kept on my feet for very long and I will not be asked to move many times. We have one or two judges that like to have you going around in circles after circle after circle while they make up their minds what they are doing. I will not show under these judges now and to be honest I don't really think they know what they are doing. I think it totally unnecessary to move our breed five times in one class.
During this day, I am acting. One, because despite what people may think I am an introverted person. I do enjoy the dressing up very much and it is a distraction from the way I walk. Two, by acting and interacting I am able to push my physical difficulties into the background. I recall quite vividly at one dog show where I had just won best of breed. I was moving my then un electrified trolley to the group ring when another exhibitor saw me and said, you didn't win then. I replied that yes I had one best of breed. His response was you look miserable. What this person had seen was me with my guard down and the look on my face was pain.
When I arrive home from a show, I go straight to bed. John will unpack the car and deal with the dogs. Later he will come up to the bedroom and help me get undressed or if I have fallen asleep he will undress me.
The following day I will be incapable of doing very much at all. I certainly will not get out of bed without double or treble morphine and I will then have a very quiet day. I will sleep most of it. The day after I will be almost back to normal as described above.
Everything I describe here is a normal day. It does not describe the bad day or a terrible day, just a normal day.
Some people think I am able-bodied.
This is knitted using two ends of Drops alpaca. I am using 4 mm needles. In this case the needles are the Lantern Moon ebony interchangeables. They are truly excellent. I knitted another sweater using this exact same yarn back in 2007.
( Alpaca Sweater )
The yarn I am using is Cascade 220. This will be a sweater for John. The design is my own. Once again I am using Lantern Moon Ebony interchangeables in 5 mm this time. What you see is just the swatch. I designed the chart using Design A Knit 8. I upgraded from DAK7. I am so far very pleased. This really took the headache out. I was able to chart the above and consequently setting the first two rows of knitting was very easy. At the moment it seems as if this will be wide enough for the measurement that I require for the sweater! I just have a few more rows to do and then I shall wash it and try it and measure it.
Very clever of you to have noticed that these are not knitted. I've bought two new pairs of Dr Martens. Aren't they gorgeous?
This is one of the puppies that were six weeks old yesterday. I will be keeping this one and also her black and white brother and her gold and white sister. I will not be keeping the two girls permanently but will be running both on until I decide which one I shall keep. They will all be getting their microchips done today.
oh my! I knew a dr who had spine surgery and she told me to never allow that. I have also known others have it who say the same thing. Only one I know had aand she doesn't regret it BUT with her it was have it or not be able to walk. For her, she can walk, but like me is in constant pain.
At the risk of sounding self-pitying, I really don't understand why people don't understand that being in 24/7 IS disabling. It means one is disabled. I am not able to live a normal life. Disability doesn't just cover para or quadriplegics or the mentally affected. Frequently not being able to dress myself, frequently unable to get out of bed unaided, always unable to walk unaided, and mostly in a wheelchair for any distance more than in my house. In my house I tend to okay because I usee furniture and walls to balance myself. Plus if you are visiting, then I ma okay that day so to you, unless you really know me, I won't appear to be what most term disabled. This govt have made is so we are the targets of resentment and bitterness from others now.
I feel guilty on my good days. Two weeks ago when i seized completely and could barely move and had to ask for outside help to get my meds for me, I actually felt PLEASED! Pleased because I was really suffering and this showed just how disabled I am. That is stupid! On my good days I feel guilty. I feel I am not earning my disability!
How many people go to the pool in their pj's? I do because if I get undressed to get dressed, to only get undressed and dressed again, I wouldn't be able to swim!
I feel guilty doing what i enjoy-dog shows. Never mind the 2.5hrs I need before I can leave my home, never mind the copious amount of morphine I need, never mind the two days recovery I need, with the first spent in agony, pills don't help much on that day. Do i complain. NO! I enjoy the show so i pay the price. That price though alos includes nasty minded people being extremely
unkind which i did not even think about because that is not how my mind works and despite my background I am still shocked by the mean spiritedness of some and by my own naivety.
During this cold weather, I am BORED! I went out today with John. We went into a supermarket type shop. I was very stiff by the time we got back to the car, not because I walked, but because it was cold. I get cold very quickly and cold leads to pain and stiffness and the inability to move much at all, thus more cold. Still, I went to Panini's with John, dragging out as much time as I could OUT of my house. Even with all I can do indoors, the dogs, music, tv, dvd, the iMac, FB, I still need to get out!
How anyone in their right mind can think i am able I have no idea. How normal is it to take 2hr43mins to get up and shower and dress and ready to go out? On a good day? (we had to time it for the tests).
Or is it I am too happy to be disabled? Too upbeat? Too independent. I don't ask for help at shows? Unless I fall over then I have no choice. Perhaps people forget about the times I fall over. Both in the ring and out.
yes, I do handle all this well and no one likes a moaner but then one gets accused of being a fraud, a liar precisely ebcause of having the attitude that is good!
What is the point of moaning and cry and ranting? It won't make me well.You know what i did when i was first diagnosed properly and knew I was fucked with no chance of getting better? I got in my car and DROVE to OSLO, NORWAY! It was November. It almost killed me and I was in agony most of the time and I was only fit enough to walk up and down, once, King whatever his name is street. But I DID it and knew I would never be able to again. And here I am 8 years later and I no i can't drive to Norway again. The IMPORTANT thing is that I drove to Oslo, Noway. I got see Norway, a little. I think that is amazing even if others see it as proof I am fit!
So i still say f*ck you to those who would do me down. i refuse to be miserable. I WILL wring every last ounce of joy out of my life.
I may have severe problems with my body and be limited by it but YOU have severe problems of another sort and they have crippled your soul.
Good morning! No, have not just got up but I have jobs to do first thing. Getting out of bed is the first job: better with the electric bed once I find the right buttons. Don't ask what happens when I don't. Then the dogs have to be let out and the squawking seagulls, I mean puppies, now have to be let out too. Then Pussy and Megan get fed. then the puppies get fed. The adults know my drugs have not kicked in so watch out that i don't fall on them. Even Megan has cottoned on to that.
Be positive! Every cloud has a silver lining as they say. I have suffered body dysmorphia since my teens. I would look in a mirror and all I saw was a fat hideous hunchback of Notre Dam figure, even when I only weighed 7stone. I pretty much dealt with this by refusing to have a mirror. I had only a small one for many years to shave.
Well, when I had my epiphany that all changed. We now have two large mirrors. On my bad days I don't look because if I do, I hate what i see. On my good days I see Daniel Craig. THAT is the silver lining I was referring to. It does get better, it really does. If you want it to and are prepared to do what it takes and what it takes is that you change your mind. Seriously. There is no magic pill, no magic answer. We just need to change our minds. It is of course the most difficult thing in the world to do. We often don't know what our mind is, let alone that it needs changing. For me, I had to realise that the ideas I had been taught, were just that, ideas, nothing more, and that i could create my own ideas, ideas that would enable me to live without fear and shame which was destroying me. To realise that my parent's opinion of me, the Church's opinion of me, my brother's opinions of me, were just that, opinions and nothing more, I was free. Once I realised that all any of us have is ideas. I had to change mine. The first and biggest problem I faced was to ditch the idea that if I told about the abuse, God would strike me down dead. The first six months of telling were among the most frightening of my life. So much so that I did lose it for a while. But as time wore on and I was still alive I began to realise that my therapist was right. Nothing happened bad happened to me for telling the truth.
Over the years, my ideas about myself, about life, about other people changed. I know they changed for the better because I have such a good life today. I always find that when I feel bad, it is I who needs to change MY thinking on the matter. Be it getting rid of the person, as sometimes that is how our idea must change, we change our mind about it being good for us to have such a person in our lives, or we have to change our attitude to a problem.
All of our problems from abuse, addiction, fear, shame, shyness, all of them respond only to a change in us. Deep within us. A complete overhaul of the way we think. It is simple but in practice it is not and is extremely painful but so worth doing. I am so glad I no longer live the life I used to live, in it's horrible dark dark day after day of suffering, years on end. Today, I don't often suffer in that way. My body suffering is a doddle by comparison.
If I can, you can. You just have to be prepared to change your mind. Literally. The difficult part will be finding out what your mind is. Meaning,, finding out what you really believe. That is really very astonishing. I was gobsmacked to discover some of my core beliefs about myself and others and the world. My core belief was that I was evil and unloveable and unacceptable. Once we knew that, we had to find out what the ideas were that made me think that. Well, I wasn't loved or liked or accepted by my own parents so obviously I was no good. Not obvious at all. I eventually after years of work, came to realise that the problem hadn't been me but them. WOW! That had not occurred to me. It also wasn't that simple. i couldn't possibly believe that. if I did, God would smite me. After all, one has to Honour Thy Parents.
I am always surprised at what I write once I start. So here you have it, my thoughts this cold and wet morning. I am happy.
The puppies really scoffed down their morning meal. I forgot to leave food for them during the night which is a good thing really. They have to learn to eat when given. They certainly were on this straight away even tho mum's milk bar was available.
I seem okay today. Just the usual boring details. Will be a day of getting to grips with my program and letting dogs and pups in and out.
Whatever it is you have to do which may seem daunting, cut it down into small chunks in your mind. That way things become easier. It is why the idea of living one day at a time is often passed along. It helps and is obvious. We only ever have to think about the time from getting up to getting back to bed. That doesn't mena one doesn't plan ahead but don't fret on plans next week, or next month. No just think about today.
I once weighed 21st7lbs (303lbs). The idea of losing as much as I needed to was beyond daunting. So i didn't think about it. i thought of only losing one pound. I weighed myself every single day. Yes because I couldn't weigh myself once a week and be hit by disappointment-dangerous. So every morning, after loo, undressed. Eventually each pound lost brought me down to 13st (182lbs). In the last 5 years I have kept it off until last year which as you know was very stressful and I could exercise very little. I put on 14lbs. I am also much sicker now than I was back then. So I have done well. but it was a pound at a time.
These sayings , like a day at a time, may sound trite, but they are for real if we stop and think. If we are all over the shop, feeling crap, and in a mess, our way clearly isn't working. We need to find solutions. Finding solutions doesn't mean getting addicted to the latest New Age craze or fundy religion-yes both are addictions of the mind. No, it means starting with the little things. No matter if it's OCD (been there doen that and sometimes go back), weight loss, hoarding, needing to clean up the house. Just little chunks at a time.
All we have is now. That is all we deal with. How we deal with now determines the next now. xo
