Hi Lucky,
I have discovered that if I go with John to the doctors, I'm more forceful than him. If they ask him how he's feeling and he says not so bad today, they literally take it as you must be out of pain etc. So I usually say, he's better today than yesterday, but tomorrow he will probably pay for trying to do too much today, and he won't be able to move for the chronic pain tomorrow. They look in disbelief, but its true. He is still physically strong, and can lift boxes etc for a few minutes, but then by god the pain and spasms soon remind him that he shouldn't have done it. Five minutes of carrying out a normal task and 5 hours of pure agony.
Our surgery has some quite good doctors who do listen to you, or we make them. We usually see a lady called Dr Hopkins and if I could give her a medal or add her to the honours list I would. She listens, and she sees us both so she knows us both. If I'm finding things hard to cope with I go and cry my eyes out explaining how much pain he is in, so when he has an appointment she is already half aware of the problems.
I don't care how long we sit there for, I make sure everything that John has experienced in between appointments, we tell her. Blood pressure, muscle spasms, chronic pain etc and by saying that he just cannot cope with the pain, he really needs something stronger, like morphine patches, led her down the road of slow release oxycontin.
If you need them, don't give in until they give them to you.
My dad had an accident when I was 6 and he never let my mother go to appointments with him, and he was in absolute agony, infact I think 30 years of pain is what killed him at 62, even though it was actually the electrics of the heart, but I think it is linked (Your body can only cope with so much pain and then something has to give). When he went to the doctors he used to try to describe the pain and they gave him Kapake and anti inflammatories and sleeping tablets, but nothing stronger. My mother used to go mad, but he would say that was all they would give him, so I am determined if it kills me trying, John is going to get whatever medication is out there to try and help ease some of his pain. I remember being at the surgery with my dad when he was asking for a repeat prescription and the receptionist was lecturing him that his tablets should not have run out yet, so he would have to wait until they were due, luckily the doctor overheard and told her if she was in half as much pain as my dad then she would understand what pain was, and he gave her a right royal telling off infront of the whole surgery.
I learn from that, if you need it, insist on having it.
When we see specialists etc and they ask him how he is feeling on a rate of 1 - 10 I always butt in with, with or without the tablets, without the tablets it would be off the rickter scale! They probably hate me being in attendance, but my only concern is John and trying to ease his pain, so for now they will just have to put up with me. John or my dad were not shurkers and both lived to work, so if they are sat in a chair or in bed then they were obviously in a great deal of pain, I think growing up with it has made me understand John's pain a great deal more. My dad tried to hide it from us, but when he was asleep you could see it in his face, he would clench his fists and groan, so we knew to try and be helpful without annoying him. He was 75% disabled, but still struggled on his own legs, with much determination right to the bitter end.
I used to argue with him to cut his toe nails as he obviously could not cut them himself, so with his foot in my hand and the nail cutters in the other he would be screaming at me to leave them alone, but he never pulled his foot away, and when I had cut them you could see by the argumentative smirk that he appreciated it really. I think that was my learning curve, and John saw that before he had his injury, so he knows I really understand, not that I don't get upset, or hurt when he is snapping my head off, but he does apologise when he sees he has hurt me.
The letter to people without chronic pain mentioned above was brilliantly written, I'm going to send it to our solicitor and tell him to read it as it describes how John's days are. There is also a few doctors who might benefit from it, especially those employed by the DSS. Their doctor has said John is less than 14% disabled because he does not use sticks or crutches and the injuries are inside, yet our spinal doctor has said he is 66% disabled. Trying to explain that he cannot use sticks or crutches because of the tightening of the tendons in his elbows and knees happen at the same time, so if he cannot straighten his legs to walk, he cannot straighten his arms either, and the pain is excrutiating, but they just think you are lying. We opened our own small business so that John could work as when he could, not working out as easily as we thought as John is in more and more pain as time passes, but because he doesn't want to accept life on the sick yet, they say well he is well enough to work so he cannot be that bad. Alternatively, they say well if his legs are in that much pain why doesn't he use a wheel chair, when you try to say that, he is trying to use his own legs for as long as possible, even though he has chronic pain, because he knows that once he gives in and uses a chair, it is doubtful that he will be able to use his legs much after that. God, doesn't it make you want to scream.
I find John's family are just as bad, his twin comes out with things like, what you need is a good old bear hug to stretch all your muscles and to straighten you out. Oh, now that would be helpful wouldn't it!!!
God I love this site, I wish I had found it years ago, when I printed some of the items out and showed them to John, he said thank god someone else knows how I feel, because you feel so isolated, it is unreal.
We had just been to the doctors complaining of spasticity, spasms and chronic pain. Diazapam was prescribed. When we went back to the car, we had a puncture. The nuts were done up to tight for me to undo, and John's tendons went tight almost immediately when he tried to undo them, so he held the wheel brace on the nut and I was stamping on the leaver to try to loosen them. It took us ages to undo them all and then the wheel was to heavy for me to lift onto the nuts, but John couldn't see them, so again we had to work as a team. In the meantime the doctor who had seen John came out to get into his car as it was the end of surgery, did he offer any help, did he hell as like, he got in his car and drove off. Things like this really irritate John, he is 6 ft and a big bloke, yet he has to rely on his wife to change a tyre. I feel like crying for him, especially when you see him watching men looking at him standing there while I'm having to do what he would otherwise have done. The expression on their face is look at that lazy ............. making her carry all the shopping or changing a tyre, etc. If only they could feel how he feels, then they would understand.
We have learnt to laugh when we feel like crying, and we do talk a lot of things through, but it doesn't make it any easier. John's eyes show me how he's feeling, grey like steel is a really bad day, green is a good day and anything in between is an average day. Puffy under the eyes and grey in colour is as bad as it gets, stay in bed and cannot move. You would think that doctors who specialise in this kind of injury would have learned something similar by now, the answer not so bad today, means I don't really want to go through it all with you, it is bad enough living with it, without trying to describe it. My dad said not so bad to one doctor and he had all his benefits stopped and it took months to appeal the decision, and he was well mangled, run over on the right side of his body by an industrial fork lift truck at the docks, 75% disabled, fractured femar, broken ribs, collar bone, punctured lung, pins and plates etc, but still they stopped his money, when lots of people who we really know have nothing wrong with them get every benefit going and live the life of riley. If you are in true pain, as you have all mentioned then there are good, bad and indifferent days, and you have to try and be happy on occasions otherwise you may as well give up, but people who aren't really ill and are claiming when they shouldn't be are willing to say they are bad all the time because it is not real to them and they seem to get everything.
Anyway, speak to you all again, and Lucky I read your short life story with interest, I will describe what happened to John to you another day, keep nagging for the medicine you want, oxycontin does help.
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God bless ya...that's funny! 
Well, I guess that would work out just fine if my torso could withstand the stresses of balance, and I found a way to hold up the dangling piece of meat that is called my paralyzed leg! 
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