This week has been a roller coaster, feeling ok then a pounding headache, then ok then the shakes, then ok then a headache and shakes it has been a night mare. Each morning I have woken to find my feet are on the floor, legs hanging out of the side of the bed where the spasms in the night have caused them to fall off of the bed and a pounding headache to go with it. Tuesday was as I have just written, I even had to go to TA in my civilian clothes as I simply could not warm up. I have not a temperature to warrant these feelings and so on Wednesday my Wife made an appointment to see a Doctor, any Doctor who was available to try to get some answers or with the best case, getting an emergency appointment with a spinal specialist. We went in to the Doctor for our double appointment that had been booked by my Wife and were immediately asked what the problem was. We started to explain the things that I had been experiencing, as we were explaining the Doctor would cut us off and ask something else to which we would answer and try to explain, again we would be cut off. At first I thought that it was to try to ascertain what any problem was and went with it, we then answered the question that was put to us about the visit we had received from the out of hours Doctor on Saturday. We explained what had happened, what the Doctor did and that I had been tested for a Urine infection and that the result had been negative, I then proceeded to tell the Doctor that we had been concerned that I may have been suffering from Autonomic Dysreflexia but were unsure if it was definitely that which was the problem, we proceeded to tell the Doctor that it appeared that the out of hours Doctor was unsure of what AD was. The outcome was that I was to take two paracetamol every four hours and drink lots of fluids. The Doctor did not really seem to be listening to what I was saying but I figured that an educated man such as he was probably very capable of reading notes while listening and so thought no more of it.
The Doctor asked a few more questions and then asked what my injury was, I replied that I was T4 incomplete paraplegic, simple enough I thought and then all of my faith in the Doctors fell from my ass, “Sorry, what does that mean?” REALLY? What does that mean? What does T4 mean, are you shitting me??? SURELY TO F*****G GOD YOU MUST KNOW WHAT T4 IS?? It was at this point that my Wife’s head fell forward in to her hands. She had really hoped that this appointment would have helped and it was already in doubt. He continued to ask us questions and each time we tried to answer and explain he would cut us off or would get what we had clearly explained completely wrong, it was at this point that my Wife, who has gone past breaking point well before we made this appointment, burst in to tears. I lost count of the amount of times that we explained to the Doctor that we were concerned about the AD and that had I been called back to the spinal unit as was supposed to happen, I would have had a consultant or certainly medical staff at the end of the phone in case of emergencies such as this. He simply repeated the fact that I had an appointment coming up near the end of June for an assessment at Stoke Mandeville. We asked if there was any way he may be able to contact them to explain the difficulty and problems that I was experiencing to see if I may be able to get seen a little quicker. His reply was simple, “I think that the time scale is fine for your appointment”. Ok, so let me get this right, AD can kill me, I am unsure if I am suffering from symptoms of AD, one Doctor I have seen was unsure as to what AD is and the Doctor I am currently talking to does not know what a T4 injury is and the end of June to speak to someone who actually knows what AD is, is fine? REALLY, HONESTLY, TRULY? ARE YOU F*****G KIDDING ME? It was at this point that my Wife could not take it any more, I have not even begun to tell you what else was said in the appointment and the responses we were given but as I said, my Wife was in a complete mess and simply got up and left.
I spent the day thinking about what had happened, trying to make sense of it, getting more and more down about the fact that the spinal unit had been the main cause of all of the problems I was experiencing now due to the distinct lack of interest they had shown me when I was in, the lack of interest in upholding the promises that they had made to me in writing at various out patients appointments and that there was every possibility that I could miss the fact that I may be suffering from AD and lose my life or end up being rushed to a hospital who probably won’t know what AD is either. When I had to attend Southampton Hospital for an operation I had to cause a scene as they did not know how to deal with a spinally injured person, this resulted in my having to be thoroughly checked by the spinal unit on my return for pressure sores and also more personal admin. Spinally injured people do not want special treatment, they just know what is required and expect that level of care which I don’t think is unreasonable.
I have come to accept now that there really is no point in my having a local Doctor, it is not a “feeling sorry for myself” statement, but a factual one. I have been told by the Doctor that I have a viral infection and this may well be the case, I have to wait for results of any blood tests to be returned, I am being tested for diabetes, this may also be the case but it is going to be hard for me to accept what the Doctor says now as his knowledge of SCI is so limited. This is not his fault, SCI requires specially trained nurses, Doctors and consultants, those who have chosen to specialise in this particular area but to that end, please help me to be seen by one of those very people. You would not take a Python to a fish shop to ask information about it as they would not be specialists in that type of animal they could give you an educated guess based on the knowledge of fish but it would not be like asking a snake shop, I was hoping that I may have been referred to a spinal Doctor to check if it is AD, due to the seriousness of the condition instead of hoping it is something that they do know about. I have therefore decided not to waste any more appointment time at my local surgery and will simply wait until I am seen by the Stoke Mandeville spinal unit. If I am accepted by them as a patient on their books then I will call them in the event of any similar problems, if not, then I guess I will take each day as it comes and hope that I can deal with any problems that come along, after all, I guess I have managed on my own so far!
I have as I said previously, written off in the hope of being given permission to carry out my next `challenge`and am just waiting for the reply. I had already been contacted by a friend of mine about another `challenge` or possibly more different `challenges` in the future. I told you that as soon as his website was up and running I would tell you about it and encourage you to visit and maybe take on some of the things he is offering, well, today I got a call from him and was very privileged to be the first person ( other than himself and his web designer) to see his site. I am so chuffed that he is doing this. I have known this guy since I joined the TA. I have been to Afghanistan with him on my first tour of duty. He is really competent in what he does and I can personally guarantee that you will only get 100% from him. He is such a good laugh and both my Wife and I are pleased to call him a friend of our family. So check out his site www.wildandfreeactivities.co.uk and get involved, try something new, rekindle things you used to do years ago, push yourself or just enjoy a walk I am sure he will cater for all. I will definitely be doing something with him in the future, I am not sure what, yet, but I know that over a coffee we will come up with something! Watch this space! Well done Sean, I am glad you have finally decided to do it.
So I have ordered my car!!! A car adapted for me to drive but will still be able to be driven by an able bodied person. A car that I will be able to move the things I need to move if I want to go away for a weekend and hopefully to go camping in the not too distant future. Unfortunately I have to wait for a while but hey, I have already been waiting to drive for nearly two years so what the hell eh? There was no `st-roll` on Wednesday as Alison is on holiday, I know, she could have been a bit more thoughtful and come back for the day but it is OK, I don ‘t hold it against her. I have after all had to miss a couple of weeks for being away with the Army so I won’t be upset about it. I really hope that she is having a great time with Steve, I already know he is having a good holiday after receiving a message from her saying that he has not quite grasped the whole `st-rolling` thing. Not the fact that he does not `roll`, but more the speed and which he `st’s`! I know also from the picture that they sent that Jack is having an absolute blast, it would appear that he does not have the same restriction on jumping in to and swimming around in rivers as he does when we go for our `st-roll` on a Wednesday!
And so that is just about it. A really weird week. My Wife is a little better now, she still gets upset and I do feel sorry. Sorry for the fact of what she is having to deal with, not just with having to help me with such basic tasks if my spasms are bad but also with the fact of constantly having to wash my clothing and bed linen due to the shear amount of sweat I am producing in the nights and days. The fact that she is no longer able to sleep in the same room as me due to the way my legs kick out and the shouting this causes me to do, effectively my relationship with my Wife is almost at patient and carer level but I love her the same as I did and do, there is just no normality any more. Although I try to most things for myself I am not able of late to do the simple tasks as the second I try to move, my spasms will lock me solid. I do not sleep with her in the bed or indeed the same room for the reasons I have previously mentioned. It is only that I would have had to by my eldest daughter a new bed that she kept our old double bed which is where my Wife is currently sleeping, other wise she would have been on the sofa. So for any drivers not on two wheels, please check before you pull from a junction. Check for the two wheel vehicles, and once you have checked, check again, and when you have pulled out and you are moving, check behind again. For the motorcyclist, the same drill, and ride safe. I wish my Mother in Law had caught up with the little twat who was on a scooter in the week who went round a car at the four way traffic lights in Chard. She can not understand how he made it, or why he or she even needed to do it but on a scooter? A 50 cc scooter with no protective clothing and a crash helmet, it is idiots like this that get away with it and more to the point, give bikers a bad name.
Note to non two wheeled drivers; It is not the physical injuries that will live forever with the person you knock off, or the mental, but the damage you will cause to every member of the family of the person who gets injured because you have not looked for the bike.
Note to two wheeled riders; Physical injuries can be dealt with and lived with, mental injuries can be harder, the strain it will put your family under will never get better. Get the right gear and wear it, “I’m only popping down the road” will be where you get hurt, enjoy your bike but treat every single vehicle as if it does not know you exist, because I can personally guarantee you from experience that the injuries you sustain, what you will lose and the effect it will have on the rest of your life, will not affect the person that puts you there in the slightest. Don’t think as I did that it will concern them mentally, because they will only be worried about their no claims bonus, they will do what they always did on a daily basis, laugh, joke go out and get pissed and get laid if they so wish, they will not worry what they have done so don’t be fooled in to thinking they will. The sun is coming, the bike will be out of the garage for the first time in God only knows how long because you don’t like riding in the rain, cold or snow and so the right wrist will be twitching. Bear in mind that you are representing the riders who ride ALL YEAR in ALL WEATHERS as I did. You ride like a twat, you label all bikers the same and cause the trouble I am having now to sort it out nearly two years down the line. And scooter owners, you are not as invincible as you think, do your bloody helmet straps up. The first time your head hits the floor is when the helmet will come off, the second time it comes off is when you will be brain damaged or dead, take note and don’t become a statistic.
For all you pedestrians, watch out for wheelchairs, they really hurt your toes….apparently!
Goodnight all.