Saturday, November 4, 2017

Ann v's Beds V's Health care system in Ireland

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.
 No wonder Apple are pulling out, due to not sorting our Planning Laws!
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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