Ann V the Bed V the Health care
services
Words such
as ‘complex serious neurodegenerative disease’ and it being a ‘heavy disease
burden,’ cuts no ice with any single person in the Republic of Ireland.
It means
nothing to consultants or care givers. there is no understanding about what this means, what it entails and how it effects for the sufferer.
Does
morphine and cannabis ring a bell as we scream for Cannabis to be
legalised?
Does it mean anything in
relation to pain and suffering and the alleviation of such suffering?
– yes, I
think the meaning behind Morphine and Cannabis does ring a bell with people.
Lets say two
women aged 64 are on Morphine and one has received Cannabis through a pain
management clinic, that is the level of pain and that equals suffering. (the cannabis was taken off the market because big pharma priced it off the market). it was a cannibis substitute so you can see where all this is going in the legalisation of the real thing can't you?
Bring on the
Bed, or in our case the lack of.
This saga
takes on Norse tale proportions as the enemy apparently being Beds has been ongoing
now for over five or six years.
It is
getting to serious proportions.
You can read
in all the best manuals on health care and prevention the benefits of a good
nights sleep – here is one, for instance, from
Harvard University no less, copied and pasted from their website:
At
a Glance
- The cost
of poor sleep is much greater than many people think: it may have profound
consequences for our long-term health.
- Research
has revealed that people who consistently fail to get enough sleep are at
an increased risk of chronic disease, and scientists are now beginning to
understand why.
- Treating
sleep as a priority, rather than a luxury, may be an important step in
preventing a number of chronic medical conditions.
The Relationship Between Sleep and Health
Not getting enough sleep can have profound consequences on a
daily and potentially long-term basis for your health and mental well-being.
We all have some sense of the relationship between sleep and our
ability to function throughout the day. After all, everyone has experienced the
fatigue, bad mood, or lack of focus that so often follow a night of poor sleep.
What many people do not realize is that a lack of sleep—
especially on a regular basis—is associated with long-term
health consequences, including chronic medical conditions like diabetes, high
blood pressure, and heart disease, and that these conditions may lead to a
shortened life expectancy. Additional research studies show that habitually
sleeping more than nine hours is also associated with poor health.
Researching the Link Between Sleep Duration and Chronic Disease
There
are three main types of study that help us understand the links between sleep
habits and the risk of developing certain diseases. The first type (called
sleep deprivation studies) involves depriving healthy research volunteers of
sleep and examining any short-term physiological changes that could trigger
disease. Such studies have revealed a variety of potentially harmful effects of
sleep deprivation usually associated with increased stress, such as increased
blood pressure, impaired control of blood glucose, and increased
inflammation.
so that is the experts 'take' on poor sleep for the education of the the common man or woman here.
We
now have absorbed the research on the benefits of good sleep, quality sleep back
to the Norse tale, in Ireland.
Two
women V. terrible beds.
Most 'normal' and 'average' people take bedding very seriously. They actually do know a thing or two about
the benefits of a good night sleep.
Workers who get up early would never bed down on ghastliness in order to
prepare for work, the effects are dangerous, from bad driving, death and poor
performance at work (and in bed)!
Bedding
is big business and an enormous amount is spent on sleep studies and bedding to
bring about maximum profits for the purchaser and also the companies involved.
What
if you are on morphine or cannabis and have no money, and I mean no money?
Like NO MONEY!
(don’t mistake a posh voice, a background in
a station above that which one is presently in, and a history of drippin' wealth
in a bygone age and generation).
Posh
voices, do not amount to “she must have money”
eg on HSE OT files “we believe she is of independent means.”
Yes, the person who wrote that was regularly riding at my sister's major riding establishment. But, I am not that sister and never was or
anything near it. I was in social housing (to the embarrasement of both family and my links to my Killiney upbringing and education). Independence from family and society brought poverty on a power second to none. Queuing for the EU food mountain beef and cheese, (where has that gone to by the way, we could do with that stuff again)?
We laughed amongst ourselves that it was most likely horse we got to eat in them plastic bags we were taking home) and we were all dirt poor. you did not look a gift horse in the mouth.
The
posh individual though dirt poor is not ignorant on the need for good sleep.
She
also has first hand knowledge of terrible sleep, terrible beds and terrible
mattresses.
Why
so – all who live through experience, learn from experience, and not by looking
at a book or a list on any auxilliary healthcare manual of items for giving to the sad community.
I
live with dystonia which is painful. I trash horribly lying down and go into spasms.
I
live with parkinsonism, this is akin to the real m'coy but not quite, but you
still do a horrible dance lying down.
And there is the non-motor effects at night mentioned by the UK
specialist who suggested it may be interfering with my sleep.
I
have raynauds and everyone who has that will be able to report through
experience what that means, pain/boiling up feet and hands and then icy cold
feet and hands, tell us about it please, well I could if you would listen.
Who
has fibromyalgia, now this is even recognized in Ireland, that is the Republic
of Ireland and I was diagnosed with it by an eminent professor no less. It's not
makie uppie, its very real. Who has
asked me in the medical field or primary care what this does to you at
night? No one.
Right
on we go in this tale of beds.
Did
I tell you the one on having no temperature control?
Or
the one on having osteoarthritis, rheumatoid artritis, nerve entrapment and a
very painful and dodgy back,all proven from scans?
Did
I ever tell you the one about stress of what I am going through right now that
has me on high alert, weeping and a chronic insomniac haunted by the vagaries
of a less than caring health service?
Well
yes, I have told you about that one.
And
have I told you about the one where my gp says the crohns is active because of
the stress? No, I didn’t.
Did
I tell you the NORSE TALE?
Ah,
coming to that.
The
Health care provider was told over six years or more ago that I was in deep
pretty shit sleeping on the bed I had.
By
this time I was broke because I fled a gun slinger in social housing and no one
helped me so I had to help myself
leaving me broke, stoney so.
 |
| god forbid this was truly hell, on the floor is my twin sister as the tiny sofa was too uncomfortable (she had a diagnosis of parkinsons disease ffs) -she came to live with me when we sold a tiny town house to get me away from 'gun slingers' in this social housing enclave, the council said by doing so she jepardised my social housing status and i could have been flung out, would ya look at the dump - would you put a dog in this place? well they do, apparently according to the last ed of Prime Time |
I
engage with the services to try and get a better sleep, as too does my twin but
her norse tale is for her to tell.
I
get foam toppers.
Please
refer to above and ‘heat’ and more
besides.
Do
people fully understand memory foam? Do
you want a lesson, well it can really be
said in two sentences – it cannot dispense heat and it holds it making you boil
up. It also lets out toxic chemicals,
which irrates.
And
the astronauts didn’t bring it to the moon, no they didn’t. Latex was the miracle invention through the Nasa Program.
But
also it was the first synthetic sophisticated attempt to bring comfort after
the horse hair and the springs, it doesn’t work well with a lot of people.
What
about air then, you know inflated with or without machines.
They
are encased in plastic, that too does nothing for a person who over heats
anyway, and air does strange things, it can move in ripples and you wait for it
as you attempt to sleep and of course as you wait you fail to sleep, it hits ya in the middle of your back as it ripples up and down, and how anyone can sleep waiting for it i don't know.
The
machine hums madly but as I am deaf that wasn’t a worrying factor, it just was
so lacking in support I couldn’t bare it.
 |
| it came as an awful surprise that so many foam toppers i still had about the house, as i strung em up to hand back! |
Five
years of varying types of these, foam in all shapes and forms, but all made of
the same material and ditto air bags all made of the same material but coming
in different shapes and forms.
My mental health state was worsening by the day, so I flung the last air mattress down to the
health centre.
I
now was in a state of post traumatic stress disorder phase and the mention of a fantastic
new idea from the HSE on a foam that...had me sweating in terror, that yet
another form of foam was going to be produced.
It
was.
 |
| Yes i flung the mattress back and left with the carcass now - months |
Five
years down the road, I flung the stuff back into the health centre, and over
six or seven months later I have nothing to lie on.
So
I bail out at twin's place but the bed still proved not great at all, but
certainly it was not a squished up miniature single bed. It was a double which allowed a fair bit of
tossing room for me, which was great.
 |
| the sick dog belonging to my twin sister loved that double bed too, for stretching about as she slept, but lordie what a mess she made of it. |
But
I wanted to come home.
I
came home.
The
small version of a single bed was mattressless but there was a spare bed in the
extension with a camp bed mattress given to me by a PA who was dispensing with
it.
I
put the rail that hoists up the blankies off my skin so I could sleep, blankets
hurt,even the fluffy type.
But
it shifted the mattress to a side slant and I rolled last night and nearly hit
the deck, meaning the floor.
Today
two very tired woman dragged two bases of a double bed into an adapted van
without the wheelchairs in it, to my home.
This isn’t funny and make no
mistake about it, its far from funny.
That
was put in the extension and the same camp bed mattress was put on it, but at
least I wont roll off, but I have had to split the bed cradle in two so that
one is on either side in case I actually do.
I
now have a double bed, a single mattress, a converted blanket cradle into grab
rails and a knackered body preparing to sleep again on not the right surfaces
at all.
I need a sleep system, but although where I
can get this is a National Centre of excellence the Health caring professionals
are denying me access. I am unaware
where the denying comes in if the centre advertises itself as a National centre
with self referring being an option or through any medical person. I have
been to the centre before and so they give the like of me a chance to get there
quicker, but not if the HSE has anything to do with it.
It’s
the only centre that does sleep systems!
Nothing
makes sense to me anymore in this small country of mine.
If
the lengths both the health care professionals have gone in trying to get me a
bed and the length I have gone hasn’t produced one either we simply cannot seem
to sort a basic.
I
have had more professionals grouping around a single hospital bed in my bedroom, with and without its mattress and
staring at the bed but nothing further done.
I
have tissue integrity nurses and nurses denying me a bed that suits my diseases
because she needs to be sure it is capable of tissue integrity to which I
inform her tissue integrity will not be an issue for me unless I am dying as I
fling like nuts around the bed through my various diseases.
It’s
a bit like the long term solution for bathing, the bloody hole in the ground –
which they insisted I had and which I resisted and won and six years later I
still can get in the bath and glad I can because it’s the only therapeutic aid
that relieves me some of the terrible pain.
I
am sick of it.
You
can tell.
But
will someone tell the HSE that the next stop will be St John of God if they
don’t sort this mess.
Its
not right and its torturous.
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