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2 09 2017

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10 03 2017

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Rare Disease Day 2017

1 03 2017

I have Ehlers Danlos type 3. It counts as a rare syndromes but is more one that is little heard of, badly managed and massively under diagnosed. It’s a collagen defect. Collagen is a protein that gives strength and stability to the ligaments that hold joints and bones together. Because I am lacking, every joint I have is hypermobile, they move so much further than they should which leads to pain and exhaustion. My joints often partially or wholly pop out. It affects every part of my body: problems such as IBS and heart problems called POTS are related; my skin is soft and stretchy and I bruise badly, blood vessels in my knuckles often just pop causing massive bruising. And I am lucky, type 3 is the mildest of this condition.
Sometimes I’m fine, sometimes I’m in so much pain I can barely breathe, sometimes I never know which day it’s going to be.
In diagnosing and managing this condition, the NHS is useless. It is a genetic condition that I’ve had since birth, the signs and symptoms have been there since birth, I got diagnosed at 41 after years of pain and exhaustion and a completely unnecessary and contraindicated operation on my elbow. I was diagnosed and sent on my way with a prescription for painkillers, splints that soon wore out, orthotics for my feet and an injunction to work on my posture and do Pilates. Working on your posture is impossible when you have no idea how you are supposed to stand! Fife didn’t want to know me because they don’t support my condition. Physios have given me exercises to actually stretch my tendons and ligaments, something that actually makes it worse!
The NHS treats conditions piecemeal. I got exercises for my arms and elbows when the problems were referred up from my hips and shoulders so of course they didn’t work. The answer to that? We don’t know how to help so here’s stronger painkillers. I have finally got my pain under some sort of control following consultation and a structured programme of exercises from The Fibro Guy, thanks Adam Foster!
And it’s not bad or malicious or incompetent, it’s just lack of knowledge and awareness. So I am writing this, incredibly lengthy, status to do just that. There are many more people out there, in pain and wondering what hell is wrong with them.
#rarediseaseday2017

#ehlersdanlossyndrome

#edsawareness

#PoTS

#zebra





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21 07 2016

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Why Scottish Labour lost so badly…

10 05 2015
We need a strong opposition and Labour, thus far, isn’t it. I said before the election last week that i thought the only thing that would have saved Scottish Labour a drubbing was setting up a separate party and i still believe that. Jim was always going to be a disaster for them and the fact that he can’t see it, even now, says a lot.
 
I am hearing that in Scotland, they need to go back to their socialist roots (agreed) and that in England, they need to go to the centre. Well, i don’t know about that but all it says to me is that they cannot succeed in either place with Scottish labour as a junior branch office. Nothing i have seen so far has indicated that London/WM based politicians of any stripe really understand what has been going on in Scotland.
 
I have believed for a long time the decline of SLab and the rise of the SNP has partly been due to SNP being a reasonably trustworthy and competent gvt but more to do with the New Labour project. Throughout the Thatcher/Major years, i think Scotland held on to the idea that when we got a UK Labour government, they’d sort out everything and give us decent, socialist government. Instead we got Tory-lite, freemarket policies with wealth creation and money placed above social and people needs. Therefore, neither the Tories or Labour could be trusted to act for the working people of Scotland. The behaviour of Labour since they lost in 2007 and their failure to really look at themselves and see what was going on, has just made it worse. After 2007, they went about behaving like brats who had had their toy pulled away from them by the bad SNP. They said they’d listen and change but they didn’t. They said they’d listen and change after 2011 but they didn’t. Then they joined up with the Tories for Better Together then they put Jim Murphy in. To date, i have heard very little positive politics from them, just a constant, negative litany of “SNP BAD, SNP BAD.” Well, that’s not good enough. It wouldn’t be good enough from the SNP either were the boot on the other foot.
 
They really are going to have to go back to basics and rebuild from the ground up and i am not sure they have the calibre of people to be able to do it. Certainly Jim Murphy is not that man. Nor can he reach out to the public, he’s carrying too much baggage.
 
I have hopes that the Greens and SSP (though i cannot STAND Tommy Sheridan) step up to the plate as Holyrood opposition in 2016 but we’ll see.




Sky.com are shit.

7 02 2015

Sky are a useless bunch of tossers!

We inform them we are moving house and get reassuring email like “Don’t worry! let our moving house team take care of all the stresses”. For some bizarre reason, they can’t just transfer our service over but have to place a new order.

Tv goes fine broadband goes tits up because they can’t move it to our address without having our house name on it. We find this out after a bland text saying they’ve cancelled our order and two long phone calls. It emerges that Openreach update their systems on the 24th of each month and we must wait until then. There is, however, only one number 13 and BT have been providing a service to the previous owner without needing the house name.

We get cross, decide to move to BT which was set up with no problems. In the meantime, while we were waiting for BT to go live, we get first a letter from Sky addressed to “Beachwood, 13….” (Our house is Beechwood) saying they were sorry we were leaving and we didn’t need to do anything if we wanted to cancel our BB order but if it was a mistake to phone them.

We then got a phone call from Sky to say they were awfully sorry but our BB would be delayed further because they couldn’t get a MAC address. Niall spoke to the girl and said we’d gone to BT so therefore we were cancelling our order which was fine.

BT went live on Wednesday. Yaay!

Today I get a text from BT saying your BB order has been cancelled due to the fact that your previous provider is still your provider.

GRRRRRRRRRRRRRRRRRRRRRR!

Niall phoned Sky (I was too cross) who are very apologetic because they didn’t cancel the order properly. I now can’t get in touch with BT because the specialist team now dealing with it only work Mon-Fri.





2 January 2015

3 01 2015

I went into Aberdeen today to get youngest’s birthday presents. It was horrendous. I hate shopping and i am not a people person. Anyway, on the way home, i drove through a blizzard and when i came out the other side, this happened.

I haven’t tinkered with the colours of this in any way. The thing i HAVE done is clawed back some detail in the moon by making it darker. I think i have darkened it too much tbh and may re-edit.

DSC00835 (Large)