Wednesday, 3 August 2016


I have been waiting .. at least in the back of my mind somewhere.

I have been waiting for a phone-call or something to be said to me that might mean that a whole can of beans will open up. A call from a family member and not regarding a certain court case.

Late yesterday afternoon just as I was about to leave a friend's house after looking after his animals and a little after a blackout I got that call.

Now I had already had a conversation with my sister about anxiety and discovered that she got it enough for someone she knows to offer her the pills she suggested to me, Propranalol. But yesterday it was one of my brothers who rings me up, ,tells e he has just had this anxiety attack and described almost to the letter what I have been getting on and off for about a decade.

The funny thhing is I did think he would be the one that potentially could experience more of what I get but anxiety is not one of the things I thought he would get.

He is the one that runs a Ford showroom and came around to me with a Ford Focus RS (or was it a Fiesta RS, cannot remember) and a Ford Mustang 5.0 V8 to take me out in the. So he has a job, lived with a girlfriend for 6 years or more and has three children and a home. My sister does not have a home, per se, but has a good job and so has her boyfriend but the rents or so expensive that renting is possible but does not want to pay those prices and would rather buy a home. Only that to do this they would have to move outside London. She is living with her boyfriend's family for now and for the next 3 or 4 months. That is when her first baby is expected to arrive.

Happy times.

I was fairly shocked as he described the feelings he got in his chest but he had looked up all that he could, when there was already a diagnosis that has been confirmed, and mentioned adrenal gland problems. I told him that I was not familiar with the adrenal gland and could not even tell him what it does. I also explained to him that in fourteen years it had never ever been mentioned to me by any hospital Doctor, specialist or GP. He asked that I looked it up to see what I thought.

So last night when I got home it was the first thing I did and I found a number of disorders, one that had dizziness standing up but nothing about full on seizures and another explaining anxiety. I also seem to remember spotting one or two other things amongst the symptoms of different things. But for my condition to be an adrenal gland disorder it would have to be at least two or maybe even three different disorders and it would not explain all my symptoms. Like my Plantar fasciitis symptoms for one. Skin conditions for another.

Also and I did not get to explain this to him as his dinner was ready but before they diagnose Fibromyalgia they normally test for just about everything else. He did state that it was diagnosed via a blood test and I did tell him that over the years I had several blood tests but he said that he discovered that they rarely specifically look for it. But I did not get to tell him that they probably do in the case of Fibromyalgia as they rule out everything else before they would even refer you off to a Fibromyalgia specialist.

My brother had also had the palpitations and the pulling feeling, I asked him if it felt like his heart was made out of rubber bands and that someone was pulling apart to the point off breaking? More or less was the answer.

This is now going to make conversations with Doctors and courts extremely interesting over the coming year.

I had guessed that the first one and maybe the only one that might experience a few of the symptoms like mine and keep getting negative test results would be this one. Because he had been in a couple of bad car accidents and as Morgan Freeman and I eventually realised it is first aggravated by a car accident, or a very hard blow to the head. Anything close enough to cause whiplash is a certain trigger. This is because of a kink in the head which in all honesty probably why more people have had it in more recent times.

Because after around the fifties and sixties the motor car became more available to the masses and they also gradually got faster. Before cars were widely used there was far less chance of us getting blows to the head or having our heads jolted. We simply were not built to race around at speeds, though many governments now fully expect us to, lol.

Weird though how e hate sitting in traffic, is it not? Lol.

Not everyone can get Fibromyalgia either, the lucky bastards! No you have to have a little kink in your central nervous system around the bas of the neck. In a jolt this gets kinked even more and it starts of signals firing off wrongly and you do not get restorative sleep, in the case of the latter you might get insomnia but even if you do not you wont know your not getting restorative sleep. The only way of knowing, other than being monitored obviously, is that you wake up every morning feeling like your tired and like you have not been asleep at all. Things become an effort to do and it just carries on getting worse.

There is a way of managing this and the very first thing you must do or as soon as you are able is to buy a bike. Especially if you get foot pains that make walking difficult, an effort or even almost impossible. Doing light exercise does seem to mange the levels but I learnt this on my own years before I had my own diagnosis of Fibromyalgia confirmed and long before I even diagnosed myself I was cycling regularly. Every other day, in fact. Speaking of facts the man that diagnosed me stated that he knew I had suffered with Fibromyalgia a long time because I cycled so much and had worked out it was the best way to get around and deal with my symptoms.

I had kind of hoped that no one else in my family would experience the symptoms of Fibromyalgia but from my research into it I did not think that nothing occurring with anyone else was very likely. I had been told of several things but I had not had a collection of things with any one person. I had also met others that went through crap like I did, though only for a few years and not fourteen years like me, was not diagnosed for 3 or 4 years and then not believed by family and friends until a sister started getting symptoms and then SHE was diagnosed with it!

Maybe me being the oldest in my generation across my entire family and the three bad car accidents I had, with the first at around 13 or 14 years of age, it was just destined to be like this for me?

I was into comics when I was a kid and of course I am into comic book movies today. I always wanted to be Superman because he could fly and that would be cool and I could go around saving people as he did in the movies and in the comics. Today I think about how cool it would be that I never have to be on my feet! I also seen clips of The Flash and think how cool it would be to zip around and do everything I need to in no time at all.

I am at a wedding this weekend, or supposed to be, so I will get to see this brother and get a chance to talk about this some more. What none of them know is that it is quite complex and there are some specific things that will tell you it is Fibromyalgia, if they are getting the symptoms already that is. I did text him and state that you get a lump feeling in your armpits with certain clothing and that on the opposite side, in your deltoids, you get this weird pain when you lift your arms up high enough which is normally close to or just past shoulder height. These are just two things that always stuck in my mind about Fibromyalgia and was already convinced this is what afflicted me before I read about them. When I did read about them that was it, no more doubt. The funny thing is that I never got to mention these to the GP I was under when I was diagnosed as just after diagnosis he got a call from someone from within the NHS that I was recording our appointments and obviously told him to get me to stop. He thought he had, then found out an hour long row we had was published on my blog, this blog, that same evening. I got a letter two days later kicking me off his register stating a break down in trust. No mention of what he repeated for an hour that I was breaking the law, lol. I kept answering him that I wasn't.

Also to kick you off a register they need to have a bloody good reason, going by the NHS's own rules. They did not have one. They tried a couple of made up reasons, one of which being a mental health problem which had already been ruled out twice you a couple of years before. Oops, should tryu reading the medical records, lol. That was the second time in a row I was kicked off a register and the only two times I was kicked off a register. But that was because I had not only known I was being lied to quite deliberately but I also realise that they had in fact known that I had Fibromyalgia for some time. This was due to two things and two people. A pain specialist that told me what my Gabapentin and Tramadol would and would not work on two years before for two areas of pain that had not even been x-rayed or scanned, let alone diagnosed, even at a guess for either. No the fact was that they had switched one drug, Gabapentin that was making me ill, for a totally unrelated one, Amitriptyline when I wanted Pregabalin and was refused it. These two drugs not only had the first positive effects on my condition I had ever experienced but in a particular version of Black's Medical Dictionary were the only two drugs to have an effect on Fibromyalgia and they did not know why.

I was also interested to see that if someone else had a collection of symptoms whether they would get fobbed off and lied to by their own Doctors? Even if they go ahead and mention Fibromyalgia to their Doctors at some point, it might get played down or lied about. However as they are both working and I was not it might go very differently for them. As after I realised for sure they were lying to me I suddenly remembered that for two GP practices in a row, only because it happened quickly, I was asked if I was working when I registered and I suddenly thought … 'well why would they want to know that?' Now if they asked if I was working with any dangerous substances or materials, that I would have not given a second thought. Indeed anything that could be related to conditions of effects that could take place on me that would me that would make a diagnosis and potentially dangerous one a lot quicker I can fully understand. But what difference would it make if I was working or not?

Unless the NHS set out a rule for General Practitioners to follow? Only thing that makes sense and I have spent years thinking up of the possibilities. Why spend money on someone that is currently paying no taxes? Oops!

Maybe they should do an intelligence test or ask people registering if they have Doctorates or Degrees? I have the latter and stupidly turned down the former where I would have coded simulation software to teach surgeons how to perform keyhole surgery. Oops! Yeah … they should have asked me, lol.

Hmm I have only just realised after all these years that there was a fellow student called Bill, wont put his surname, who stayed on at Middlesex University. I wonder if he got offered what I did? If he did I wonder if he was told that I had in fact turned it down? Lol. Git! Lol.

I could not post this straight away because my Internet credit ran out. So thought now that I was back that I might mention something that happened. Something that shows another reason I should and can not travel on public transport during peak periods. For this was not a peak period.

I got on a bus and had a woman in front of me with a bag or something and in front of her someone taking forever to find a seat. It was something stupid, cannot remember exactly but think it was being indecisive about what seat they wanted. I was standing by the exit doors while they decided when some guy behind me said “excuse me” and I looked round to my right ans saw a guy coming up my right side. I thought he was trying to get off, which was a bit weird because I was at the beginning of the route at Waltham Cross bus garage and on a '217' bus. The exit doors were, therefore, closed. He then went around the woman in front of me and went and sat in the seat in the furthest right hand corner and I was already annoyed.

He was fucking lucky he was out of arms reach by the time I realised what he was doing as I was wanted to reach out and grab him by the fucking neck, open the exit doors and throw him out foe being so fucking rude.

I went and sat down in the rear most middle seat and looked to my right and stared at him but he was engrossed in something … oh yeah I remember now he was rooting around in a black backpack. Suddenly he had a phone in his hand and the next thing I knew he was talking to someone on his phone. After a couple of minutes I heard the word “pokeballs” and then “lucky egg” and heard him say he was heading for Southbury, which is in Enfield. I wondered if that was why he was rushing around and was extremely tempted to ask him how barging past people and being rude and did he think that would make the bus go any quicker or help him get any more Pokemon that he otherwise would?

I had put some tea tree oil on my head as my skin problem on my scalp was flaring up. The aramour had not only lingered it had quite bizarrely made me smell like a swimming pool all afternoon as it smelt like chloride. In fact it was like those foot baths you walk through at some swimming pools that have a higher concentration of chlorine to kill any diseases you might have on your feet. Germs and things that can lead to warts, that sort of thing. Out of the corner of my eye I see the guy turn and look at me and I thought if this was the kind of person that would mention something to someone that was embarrassing in a public place he was now going to go to hospital. 'Ask me, go on' I thought to myself 'and I will now lose it and beat the crap out of you!'

He then shifted to the seat facing him and then after a few seconds he got up and walked down the bus and I thought he was getting off and wondered why he had bothered changing seats?

But he did not ring the bell and walked past the exit doors and fucking went upstairs?! I recall he was telling a mate that someone they knew was an idiot and talking BS and I suddenly thought 'I think you have a few issues yourself, mate!'

Barging around the bus because of a fucking Pokemon Go game,, fidgety and switching seats all over the place strongly suggested that there was something not quite right with him. I do not think it was autism as he seemed to speak OK. But them maybe autism comes in different levels or something and until Pokemon Go came out he did not leave his home like that teenage boy recently who had autism? Maybe what he had was something else?

Does not make it OK and still annoying but at least it was understandable. However I could have ended up hurting someone and putting them in hospital had I been having a bad day with my Fibromyalgia, right knee and back pain?

I also think that black guy better Pokemon STOP! Otherwise someone else might actually Pokemmon eyes out, pr blacken them? Lol.

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