God what a day!
I hit a snag with the project I spent four hours on. I then realised I made a really stupid mistake but that I had been confused by a part I bought but actually fitting correctly.
Meant I needed to buy something but was skint (penniless). Mate saved the day but got to town and usual shop that should stock what I wanted don't usually stock them?! A friend in there called Ed tells me of another shop across the road that I just keep forgetting is there! The memory thing is getting more writing all the time and I long to converse with someone else who has it. I am extremely paranoid at times I am going to lose my marbles, memory that is, like with Alzheimer's and the respect I already had for Alzheimer sufferers have skyrocketed in recent times!
Bizarrely this much needed item at this toe of shop was also not stocked at the second store?! Meaning I had two more a bit further away and I made my way there. It was a nice day but the sub was hit after awhile and my legs and exhaustion stated to suffer. Originally intending to return to a mates store that went south for the winter. Also had to pick up prescription, well if the surgery have not refused it like the last one, but after finally acquiring what I needed and despite the Boots being in my way home that went south for the winter too!
In the playing fields I had to stop several times and then take it slow and then I got a phone call from a friend. I was asked a quite unexpected question as for the first time ever someone actually asked me about my condition! Turned out she had a friend and I got a such when I was told that her Doctor suspected either Fibromyalgia or, yet another possible similar condition shocker, LUPUS?!
We charted for a bit and I explained what I knew of Fibromyalgia and she explained a few things that signed familiar, in the way is symptoms. But then there are so many I guess anyone could come out with hair a dozen symptoms I probably had most of anyway. Then she said that she had some odd test results and was going to be tested fur Lupus. I found myself flabbergasted that Lupus and Fibromyalgia were used in the same possible diagnosis?!
I was told that my condition rang no bells with anyone and did not match anything they were familiar with and yet I found Charcot Marie Tooth (I was not familiar with), Fibromyalgia (I knew the name of but not symptoms) and now Lupus which is the most heard of of the three!! A friend of mine has a sister who suffers with Lupus.
Do not ask me if I have been tested for Lupus because I simply could not tell you.
However we got talking about drugs and some familiar names came up. Sertraline was mentioned which we both took. I asked if they helped and the answer was no and I said no I think they do nothing for me. Thus happened with a few drugs and I said it certainly sounds like Fibromyalgia and that you find many drugs do not work. I mentioned Gabapentin and she had heard of it and then I explained the while nightmare I had been through with Doctors, GPs and hospitals in either knowingly lying and falsifying or wrongly diagnosing only to get contradicted by the next Doctor. I then explained how I was tricked into looking like a list by first being told Pregabalin, a new version of Gabapentin, would be prescribed and then a letter not mentioning the drug at all and the fact that they did all that for a drug that is only the secondary one used for Fibromyalgia. Sodium oxybate is the holy grail of drugs for Fibromyalgia and the only true drug that actually desks with the core problem. Then person I was charting to mentioned the 'A' drug! Amitriptyline! I then said I was about to come onto that as I am on them. However I think I forgot to mention that I think that Amitriptyline might be the reason I an feeling sleep during the day which is getting me ratty and short-tempered as it screw's up my body clock and night time sleeping which really did not need it.
But unfortunately and as can be clearly seen here you cannot have a genuine and reasonable conversation with an NHS Doctor or GP because they will lie and misinform you because they are worried about keeping their huge salaries as NHS staff members.
Why even bother going to a Doctor's Surgery? Way harder than it used to be with ever changing and often unfair rules and waiting times only to be lied to, fobbed off, manipulated, contracting MRSA or some other virus or infection or even killed!
Despite my disagreeing it is just like my old mate Old Ken said "your better off staying away from hospitals because he thought if he went into Chase Farm Hospital he would not come out alive. He did manage to get in and out alive, but with a diagnosis of kidney cancer and next time he was taken in he did not come out! RIP mate!
The lady I was chatting to was surprised at what I had stated about all that I had seen, which was only the top of the iceberg really, and asked if it was OK to add me on Facebook. I said it would be fine.
To be honest I am a bit yappy at times like this because I was in pain, feeling exhausted and walking home. So anyone that rings or texts me might get lengthy conversations or texts, lol.
I was almost home when I got off the phone and with my magic jigsaw piece I found myself wondering if I am able to get my Project Zero up and running, with a few finishing touches to apply over the next month, oh and an electricity bill to sort out.
I had wondered the entire pain filled journey if I had indeed found the piece I needed and was having difficulty remembering things. I did this kind of project just a couple of years back for someone else and the beneficiaries of my skills told how I was like a whirlwind and so was the little project once done! This was my thing, my passion albeit an expensive one if you let it become expensive that is. But I was having difficulties remembering things and made some very stupid errors. Schoolboy errors!
I need not have worried add the final additional extension to a substandard item bought did indeed so the trick! Project a go-go! Except while I was being in the glow of another accomplishment after a pregnant pause I kept feeling odd. I kept shaking my head and leaning my head and cranking my neck around. Crunching and cracking as it rolled around just as it usually does at times like this. I was attempting to add some finishing touches to the project, the first of several over the next month, and started doing some testing but gradually felt worse. Before long it was bad nausea which was ruining the feeling of euphoria I was having while testing things. It gradually became worse and I raised I wanted to vomit and managed to stop myself a few times.
In the end I decided to give up for the night and I had taking some stempsil, I think they are, which are supposed to stop nausea and vomiting but just like Domperidone and ask the other useless pills they have given me over the years they had, had no effect.
I also got a call on an update on a situation I had wondered whether was still going to happen. It did. I have alluded to this very recently and this is all I will do.
There is a time to state things and a time to not state things and this can be for a whole number of reasons. Some help was requested if me I was unfortunately unable to provide on this occasion and what had transpired sorry if cane out if the blue and was not prepared for it. Maybe, just maybe I was wing bit to take up the proposal made to me on behalf on Groupon?
But this is the thing with life, you just cannot predict what will happen next and on top of that no matter how good a Doctor you may think you are you cannot imagine what some conditions age like to live with and how frustrated you can get. Being told 'sorry your screwed and have to live a life of never-ending hell of different kinds ask because they want to save a few quid while earning a few hundred thousand pounds per year.
That, however, will come to an end before long in a rather noisy and public way I would wager.
To be honest it's not just Doctors who suffer from tunnel vision, naivety and self obsession either. Having experiences of different kinds each of which has you not wanting to wake up the next morning when they are at their worst makes you get a great many things about people and society into extreme perspectives.
When people carry on just as they did before it can get infuriating and this is why I prefer my cut off existence for now. It forces me to see what is important and what is worthy and this that thought the best thing was for someone to walk away from a noble cause and be a father to someone who had the mother from the depths of hell was not a bright idea.
I have always endeavoured to do the honourable thing if I am able but not everyone deserves the honourable thing. It is a crying shame when egos outgrow oaths. Or self-preservation outweighs titles once achieved but these are seen as clear as day by me. Mentioning it exposing this kind of defeats the object and it is not for me to point out the error if ones ways, this is their tasks to bear just add my tasks were mine, even when others did not want to bear any part of them.
If ever a time came for explanations then there are no explanations to give because time is their enemy! You cannot make excuses for time when unwanted attention comes clambering at your door. The champagne is smashed and the ship sailed and if anyone can explain to you it is I that time simply cannot be recovered.
This is the one error that all around me make and their worst enemy appears to make it appear worse when it happens time after TIME!!
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