Well I’m sitting in St Catherine’s Hospital and feeling .. weird and a little .. anxious.
I know this appointment won’t come to much especially as I discovered this isn’t the fast-track appointment I was told I was getting. That then comes from this one .. or if I get called back due a second appointment here?
But as well as this is the full MRI happening to someone else at 12.40pm.
I probably won’t be able to put the tags on this until later on tonight and even then only when the two girls are asleep. You just can’t do anything while they are awake.
Then we both feel shattered and we both have the short term memory part of Fibromyalgia anyway.
This are very simply .. impossible.
We are basically just struggling by while trying every now and then to reach out to get help.
At least we had a letter regarding what I believe to be the audiology test around the 5th December, I think it was.
A test for the youngest boy I wasn’t even aware was tested came back OK, so no ADHD. Just a plain old needy child that thinks the rules apply to his three siblings and not him. Lol.
Last night good older brother was being called who didn’t hear us. But the ten year-olds five year old brother heard us from his bed and started shouting downstairs to him. In the hope he would be told it’s bedtime. Because he doesn’t understand that being twice his age means he stays to longer. It’s kinda funny.
I’m not really used to all this, never had children around to watch grow up.
I don’t know what children do and at what age.
As I have said to several people here in making it up as I go along.
I’m getting tired all the time and it’s getting worse but I’ve absolutely nowhere where I can relax.
The few times I get back to my own flat for a few hours I simply cannot relax there either.
But none of that had been on my mind for days because there is so much else going on all the time.
Of course this got a whole lot worse around a week ago and I literally don’t know whether I’m coming or going.
I’m always one to have clean clothing on but I’ve only just managed to wash a load of clothes .. oops ..
Got called in.
Usual crap tests .. ECG which showed a little as did the blood pressure test ..
As I noted in the letter this is not what the GP referred to as a fast-track appointment.
In fact now I’ve been in the hospital a second time in not quite so sure it’s a hospital. In fact it’s more like an oversized GP Surgery and appears to have no beds/wards?
Not entirely sure what the point was with the building .. especially as it looks like it costs millions to build?
Anyway as I knew .. I was told to stop smoking .. it won’t really do very much at all and I fucking hate it when they tell you that ..
.. so I told my usual story about turning down the offer of a Doctorate at Middlesex University where I would have worked on the software to teach keyhole surgeons how to do surgery.
Her eyes went wide and her mouth opened with shock. I normally get surprised reactions but not to this level. She said I should have accepted, I said “I know”.
I only tell this story to stop being patronised and hearing the same shit. The ‘stop smoking’ line.
The fact is I have quit .. TWICE!!
Up until the DWP came along and fecked with everything I had not smoked for three years.
Up until the DWP pulled the rug from under me.
I then found out about my daughter’s domestic violence which is a historical court case with the perpetrator locked up, though still phoning my daughter and her mother up to 165 times a night.
I then found out one of my grandchildren was autistic, which made a lot of sense.
I was at starting to realise my daughter already had my disability. Quite a few symptoms I had plus I was noticing some I didn’t.
There were some female specific issues that I just assumed must be parts of Fibromyalgia that I just hadn’t read about. But no.
I had already started smoking at this point .. now it must be stressed that I not only have no confidence whatsoever is ANY public service or their governing bodies and watchdogs, or the courts for that matter, but I knew they lied.
I knew that this lying would ultimately lead to consequences later on. So did nurses as well as pharmacists I had spoken to. So did two GPs.
At least you can tell with a small percentage of petite that they became Doctors and Specialists to actually help people and not for the salary.
As she was telling her GP of her Fibromyalgia this then explained several things the GP had been wondering about. But then there were those other things ..
These have appeared to several, yup now several due to a clinical meeting, General Practitioners and Specialists to look like something else .. something not good.
Then there was something else .. then there was something else in a follow up appointment.
Battery of tests, return to GP and then there was something else.
Leaving aside the Fibromyalgia confirmation we have had no less than FOUR extra things all of which don’t look good at all.
So what I was going to state earlier in the post is that I was worried about a later appointment I’m not even present at.
In fact as in typing this out this other appointment should be with done or about half way through.
It’s a full body MRI and at a cost between £3,000 to £5,000 when I last looked .. they simply don’t perform these unless they are worried. Very .. worried.
I know because I’ve asked for one for over ten years, see the problem here? I almost nearly had one performed privately. That’s how I know the minimum cost. It was somewhere in the vicinity of Canary Wharf?
So yeah .. stop smoking? Your joking right?
This would be an unreasonable expectation anyway with everything that is, or indeed is not, going on. Throw in the cursed anxiety and you might as well kill me right now.
In fact I stated recently that things have been bad at times where I just wished I would die and it was all over with.
This is not once or twice and it’s not even in the single figure ball-park.
It’s well into double figures and wouldn’t be too surprised if it was into three figures.
After awhile you just want to to end.
There’s a list of things which invariably are behind this and any one can have you wishing to God that someone would just switch off the proverbial lights!
The anxiety is one and the others are a number of pains in different parts of my body.
And I’m only talking about mine!
Now I have to think about what’s its like for someone else who has serious complications thrown into that mix.
Then the fact that there is no one to rely on one hundred percent. Even the one that is around is now not trusted by the council of all people. So relying on them won’t go down well with the council of anything happens!
That’s because of four children on the endangered, I think it’s called, register. Two of which are autistic which can be OK at times, good sometimes, bad at others and a trip into hell but with embarrassment sometimes thrown in at others.
My mind .. boggles. When it had the chance and gets the time to .. well, boggle.
It’s been .. boggling for weeks. It boggles more and more all the time and I’m sure it’s a few weeks from leveling out?
So I sit here awaiting someone’s return and I have more tests at Arrow Park Hospital the day after Boxing Day.
An Echocardiogram followed by a 24 hour .. umm Echocardiogram. Wait let me check? Yup.
Oh that’s .. weird. She said Arrow Park but it seems that it’s the same hospital?
Ahh .. unless there is another one to come through the post?
Yeah .. memory problems .. simply can’t recall everything .. often .. of I can recall anything at all.
My daughter has the exact same thing too.
Well they have returned. Only I’m somewhat confused ..
No MRI was performed?!
The person who accompanied the patient said that all they did was sit there and talk about things. Things?
Of course as the the course of a usual day for us .. there was only minutes to spare before I was left with the two young girls again and other children had to be picked up from school.
At least my chest pains and heart palpitations were aggravated by children having meltdowns, fights, arguing, screaming for things.
Well .. the second time they went out one screamed for something. Until I said I’d give it to her if she was quiet. But then I knew it would be mere seconds be the other one spotted the youngest one with a biscuit and a slice of bread and started.
Then it went back to being quiet. Thankfully. The only other thing is having to put up with mind melting children’s videos with have had to endure over and over again.
Well .. this time and desire their previous negative responses and shouts of “NO?!” I have managed to put on two or three things in the last few days they were then glued to.
Right now it’s Oscar’s Oasis which can be found on Netflix.
Finding something that one autistic child likes outside of their ‘norm’ or comfort zone is hard enough. Finding one that pleases two is a nightmare.
Oh then there is needy-boy who only ever wants to watch Spider-Man or someone playing a Lego game that he then thinks he is playing. Pressing his knees like they are buttons. He becomes transfixed and you can tell his name and he wouldn’t bat an eyelid.
Say a sentence was a particular food word in it and somehow they all hear that?! Has to be particular foods though ..
Pizza, chips, biscuits, yoghurt, chocolate, drink, milkshake and crisps are all key-words they react to. Oh the youngest loves bread. Oh and toast and cereal is another one.
Oddly the older of the autistic children seems to go against everything you offer her. Offer one flavour of crisps and she shouts “no” and demands a particular colour packet. Most of the time though she then brings you the uneaten packet, hands then you you and says “Don’t like it!”
Point at a cereal and she demands a different one and the same thing as the crisps can take place with “Don’t like it!”
The wastage of food is indescribable. Seems almost criminal to me with the cost of food today and people .. well some people, not self inflicted, going starving.
Speaking of self-inflicted?
One couple had one half of them convinced they were getting two payments before Christmas of Universal Credit.
One 4 year old and one on the way.
Turns out they haven’t and despite being warned by others the one convinced had a little bit of a spend.
Now things look .. precarious.
Now I have to wait to find out what in the world happened today?
I ended up in terrible pain just prior to them leaving to go to the hospital.
I looked after the two girls and they wanted to cancel the appointment because of this but I said “NO! Your going!”
Oops .. seems Oscar didn’t last and I’ve had to resort to watching Peppa Pig fit the hundredth time!
The other children’s program they like is called Gon, seemingly about a young Dinosaur or Lizard.