There are
various ends.
And there
are various dreams of those ends.
These ends
might not be what you may well be picturing in your heads right now,
or maybe they are depending on how you searched to get to this page.
I have
spoken many times about my disability of Fibromyalgia and the number
of symptoms it causes. Man of these are unbearable and others
potentially dangerous. New ones have appeared that I believe to be
dangerous and have had me ask about having my feet amputated and
replaced with mechanical ones.
Others make
we want to die. Purely because they are both unbearable and .. simply
not dealt with or ignored. Until now but they are still not
understanding of the seriousness of the situation nor the backlash
should something go wrong. Even more annoyingly the one that has me
longing for death can be dealt with in any one of three ways. Two
involve the correct prescriptions with an understanding that my short
term memory problems are .. well, problematic and actually compound
the problem.
Another one
of those is the fact that I have been led down a garden path .. have
enough money to set myself up doing what it is I love best presently
and .. had the proverbial rug pulled from beneath me leaving me with
an ever shrinking amount of savings and minus four items .. one
100-400mm lens, though professionals use the more expensive f2.8
300mm lens and f4 500mm lens. The first would be enough and it is a
third of the price of the 300mm and sixth of the price of the 500mm.
The second is a flash, yeah I did not even manage to get that. The
third is a camera drone .. for cliff faces for sea birds and tree
tops for things like Purple Emperor Butterflies I have wanted to film
for a number of years now. These are challenges and I like challenges
and being successful then you tend to be more successful with it. I
also had to build a new PC to be able to edit the very high
definition RAW file photographs and 4K video. You simply cannot do it
with a budget built PC. I also wanted to have a go at making cages ..
out of glass and wood to sell to people wanting to grow Orchids,
something I am adept at. So I needed a couple of DeWalt items, a
Festool Circular Saw and a worktable.
I have a
dozen blogs and the camera would help most of them while the work
tools would help both my Orchid blog and my YouTube channel.
Right here
and ow there is another pause on all that and one I did not expect to
go on anywhere near as long as it has.
So I was led
down a garden path, got all my plans and purchases accepted week
after week for three months or more and then as I did them they all
got cancelled. So I was encouraged to spend the money and then was
told the proverbial rug had been pulled around a week after the date
I went self-employed.
I was
tricked and I was lied to.
A shame then
that they sent me emails all the way through and that I recorded
every single NEA meeting and every single Job Coach meeting.
I should not
be experiencing my anxiety. But I am. The day I received an email
from that Work & Pensions Select Committee I was happier. I had
also received my first Universal Credit payment too so that was
another worry out of the way. But there are still many others and
what is primary are the results to three tests, one due any time now
and a breast scan that is any day now too. Tomorrow or Friday I
believe. Then there is the stomach scan which is itself developing
some very odd problems and pains. Many seem to be similar to ones I
have had but not entirely sure on all of them. There was a pain being
felt last night.
As stated
previously and due to the problems with Autism there are four
children and two afflicted with the aforementioned condition.
Last night
there was a conversation in this house with the other of a single
child out of three that has Autism and he is violent. Even the Police
have been called to the house. The boy is eight.
Some
questions that has been wondered about were asked and I remember
someone stating that the children get worse and in all honesty .. it
is fucking hard to imagine things getting harder. The older of our
two with Autism is already a bloody nightmare and they tell us the
youngest o going to be worse. It simply does not bear thinking about.
We were
explaining that the older one goes into a meltdown now because she
wants to sleep in mum's bed every night. There is only one reason for
this .. her room gets locked and this does not happen with her mum's
room, therefore she knows she can come swanning down the stairs
several times and she does. Every night. She demands things like TV
programs, TV's in the bedroom and even when she try to briber her
with going to bed in her own room, with sweets, and get those
promises they are broken. Within ten minutes at times.
The other
mother of an Autistic child said that they were indeed going to get
worse when they get older and that her child does not even have a bed
in his room because he always sleeps I his mother's bed. He refused
to go to school but there was some rumour that the authorities turned
up t the house and marched him to school?
I constantly
ask myself how this young mother is going to cope and if anything was
to happen to her, which seems likely due to the way the Doctors and
hospitals are all acting nervous and have called us in six times in a
few weeks and and seems no sign of ending, how the fuck will I cope?!
I ask myself
that if we get through these test result OK or with some successful
operative procedure will my anxiety finally go? Or will I still have
these feelings of absolute dread that I do not understand?
At least I
know one substance to cut out that seems to magnify what they call
'the night dreads' and turn them up to 11. But it may well go up to
'11' or higher all on its own?
So when you
have had this sort of thing long enough you start to picture the
various endings to it all and you hope that they come. In the end you
do not care.
I am one
that would not like to lose my mobility and I certainly would not
like to lose my independence. I get too .. hyped up and I am already
having feelings of missing getting out and about amongst nature with
my camera stuff .. I long for it at times.
But the
seriously dwindled state of my savings has made me somewhat nervous
.. I case things go wrong and .. as I am not clear yet if I am
getting even the proper and normal amount of Universal Credit I am
even more wary of doing anything.
I just hope
that by March, at least, something has worked out because the Spring,
Summer and Autumn can be very productive times for me. I can be
active in the Winter too and often used to be but due to hibernation
.. there was always less opportunities. Except if and when it became
picturesque and maybe with .. architecture.
Each time
you go through 'episodes' it seems to go on forever and you start to
think it will never end but it does. Eventually. When the authorities
stop coming after you with a proverbial axe and holding hands out for
funds that do not exist an any universe.
In the last
week or two I have created four opportunities of this latest episode
coming to an end .. for most things and for both of us.
- My Patreon account to help me
- GoFundMe to help these kids and mum .. due to confusion with them ..
- JustGiving to help these kids and there mother
- Contact from Work & Pensions Select Committee to possibly help all of us
For the time
being I have to keep on suffering and am still trying to get things
done but what with Christmas and all the Hospitals, Doctors,
supposedly moving into a bare empty house, memory issues, pain,
anxiety and this damned chest/heart thing and someone else's stomach
and now nausea thing, two autistic children .. one needy boy who is
now copying the oldest Autistic and having a meltdown about sleeping
in his mother's bed too.
I told you
that needy-boy was a problem?
Mother in
pain .. decides to have a bath .. need-boy, NOT Autistic, has already
been screaming as loud as he can 'I DON'T .. WANT .. TO GO TO BED!'
for half an hour who then makes every excuse to come out of his room,
get sent back and balling his eyes out for not getting his own way.
Keeping the oldest Autistic one awake and encouraging her out of her
mother's room where she sreamed the place down when told she cannot
sleep in their. Needy-boy, he is the one in the picture on the
crowdfunding site, taken years ago and is even crying in that picture
too when I knew he would be like this, is also winding up and
fighting with the Autistic sister.
I heard the
mother explode from the bathroom!
I could not
go up and exert any authority because .. well she was in the bath!
LOL.
Meltdown,
meltdown, meltdown is all it is and they are even at school part to
most of the day. One here now but not too bad on her own, the
youngest.
They need to
be separated and they absolutely need their on bedrooms .. seriously
need their own bedrooms. Or things ill get far, far .. worse.
Oh but there
is a new house that is more suitable. Yeah I did say MORE suitable.
They still have to be paired up in bedrooms but they are bigger. One
at one end and another at the other.
Yeah
needy-boy with still end up winding everyone up including his brother
who will go through puberty soon, meaning needy-boy gets black eyes a
lot.
Yeah and the
Devil's Angel will still wake up three time a night .. wake up her
little sister and the two of them will have meltdowns throughout the
day and that is without needy-boy who goes around winding all three
others up.
I do see
mistakes, sure. But it is not my place to say. There is too much
stress going on and not my place anyway.
But then I
am in panic mode because I think I might be suddenly thrust into this
and it is all my sole responsibility?!
EDIT: The the discovery of and of course lack of being informed, despite the inordinate amount of waiting for them because they are so important and know so much, of GPs, Doctors and Specialists failing to tell me that my now damaged eyesight, heart and blood pressure could be affected by Fibromyalgia because they refused to send me to a specialist and even when I tricked the into doing so .. only saw me once.
Didn't tell me it as behind the anxiety or that this could lead to the loss of the use of your legs on occasion?! Or that there are links to both high suicides, oh how I now get that as well as cancer and likely other things, like aneurysms which is what my father died of at 56.
EDIT: The the discovery of and of course lack of being informed, despite the inordinate amount of waiting for them because they are so important and know so much, of GPs, Doctors and Specialists failing to tell me that my now damaged eyesight, heart and blood pressure could be affected by Fibromyalgia because they refused to send me to a specialist and even when I tricked the into doing so .. only saw me once.
Didn't tell me it as behind the anxiety or that this could lead to the loss of the use of your legs on occasion?! Or that there are links to both high suicides, oh how I now get that as well as cancer and likely other things, like aneurysms which is what my father died of at 56.
Good God,
man. Someone shoot me please! I would be far more humane.
Two videos of the two oldest kids from a few years back ..
Needy-boy when he started being needy some years ago ..
Oldest again ..
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