Carole…

…speaking through art, poetry and humour…oh and politics too!

Archive for March 2013

Edinburgh Bedroom Tax Demo 30th March 2013

Written by carolecarrick

March 31, 2013 at 1:39 pm

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Bedroom Tax @ cmshome Social housing and politics

Explanation of the ‘BedroomTax’ and it’s effects upon ordinary people.

 

cmshome | Social housing and politics.

Written by carolecarrick

March 29, 2013 at 4:51 pm

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The upside of isolated civilizations by Jason Shipinski

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March 29, 2013 at 4:15 pm

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Seven Years

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March 29, 2013 at 9:37 am

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Mike Sivier's blog

“We’re going to end the ‘something-for-nothing’ culture.”

Sometimes a phrase stands out from everything else that’s said around it, launches itself at your face and forces you to confront the enormity of the lie it encapsulates. You knew this was going to end badly, the moment Iain Duncan Smith (Vox Political’s Monster of the Year, 2012, let’s not forget) opened his face and uttered the words.

He was trying to say that people on Jobseekers’ Allowance (JSA) should not expect to get the benefit without putting something back into society – totally bypassing the fact that they have either already paid towards it, via taxes paid while they were in a previous job, or they will in the future, when they manage to get a job (if such a thing is still achievable in a Tory-led UK).

This was to justify the many ‘Mandatory Work Activity’ schemes onto which jobseekers…

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Written by carolecarrick

March 29, 2013 at 9:35 am

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Following on…

Carole

Following on from yesterday’s blog where my husband Clive recounted his experiences of being bedbound, I’d like to talk a little about how being housebound affects me.

I’ve had M.E. for almost 15 years now, It came upon me very quickly after my husband and I went through our second attempt at ICSI…specialied IVF. I’d had Glandular Fever a few months before but I remember recovering from that quite well. It wasn’t until the drugs regime in our 2nd of three attempts that I noticed how ill I was becoming.

It’s actually a bit of a blur that first year. I know I spent short periods in bed sleeping for up to 23 hours a day. I don’t really know how we coped through that and why we weren’t more alarmed by this sudden change in fitness and health in me. I think we just muddled through.

My symptoms would come and go almost as if they followed my hormone changes but steadily they got more sporadic and less controllable and even more difficult to hide from those around me.

Back then I was very active, not sporty in any way but very close to nature and outside doing ‘stuff’ every chance I could get. That changed overnight. I had to really pace myself to be able to do what needed doing nevermind the fun stuff.

For a good time I was well again and thought it had all gone away, I think for perhaps at least a year in which time I ploughed myself into helping with a local ME charity and setting up two support groups in local towns.Then it all came back with a vengeance and I haven’t really recovered since.

During all these years I have only claimed DLA once…that was five years ago. I was refused and it went to tribunal. I can honestly say that experience was horrific. I never want to to repeat the feeling of inadequacy I felt during that process…the three people involved belittled me and if I’m honest abused their position of power. I was however awarded low rate care. When the renewal date came I didn’t reapply…the whole experience had scared me so much and the stress caused untold months of relapse for me.

I then developed cancer, I won’t go into this too deeply except to say I lost my womb and along with it a little of my soul. That was three years ago. My gynaecologist was excellent as were every member of staff on the ward I was treated at. But since then I have gone downhill even more so to the point I leave the house less than ten times a month…sometimes much less or never.

This has a huge impact upon my life. Every little chore or activity, even if it’s fun and makes me happy has to be weighed up as to whether it’s worth the payback and the flaring of multiple symptoms I have with overdoing it. This can be a simple as sleeping for hours or as bad as incredible overwhelming weakness and exhaustion, nausea, immune responses, headaches, sleeplessness, neuropathic, joint, muscular and chest pains. A multitude more including tinnitus and feeling foggy headed and confused. Not to mention the emotional effects that M.E. has upon me. I can have an over-reaction to the most everyday things and it all becomes overwhelming for me.

I tend to live my life online these days. I speak on the phone to a few dear friends. I keep in touch with my parents daily. I bear a lot of guilt that because of my own disability I am no longer able to help them the way a daughter would normally do so. I try hard to be there for them in a supportive capacity now that I can’t physically help out.

I’m lucky I am creative…during good spells I have a number of crafts I enjoy. That helps my soul to be able to express myself that way. Otherwise it’s mostly reading and often campaigning for awareness and treatment on social media sites.

I feel lucky that I have the ability to do all I can still. So many of my friends can do much less than I and I fight for them as well as myself really…I tell my story so that those who have no voice and no means of telling how bad being affected by ME is to those who need to hear it.

Lastly I am going to apply for DLA again…I gathered some courage together and the form is sat by my bed. I have another two weeks to return it. Everything the Government is doing right now against the sick, disabled, poor, elderly and most vulnerable in society sickens me to the core. I write this so that it raises awareness of invisible illness and also to help Liz Crow and her Bedding Out art activism campaign to highlight how the Welfare Reforms are affecting so many thousands of people in the UK.

I have a voice and I am using it. 🙂

http://www.roaring-girl.co.uk/

Written by carolecarrick

March 28, 2013 at 4:18 pm

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Mr and Mrs John Coles…Injustice!

Written by carolecarrick

March 28, 2013 at 2:43 pm

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When I was bedbound…

My name is Clive. I have been a paraplegic since I was 21 years old…I’m nearly fifty now. After my accident I was in ICU for two weeks and then transferred to a spinal Injuries unit (SIU) for 10 months. I had a complete break in my spinal cord leaving me with total paralysis from the belly button down, head injuries, my leg broken in two places, cracked ribs and punctured lungs.

The first two weeks in ICU I was mostly unconscious and I have no knowledge about, apart from the dreaded suction tube to clear the tube going into my lungs from the ventilator. I felt like I couldn’t breathe and the pain of one of the tubes being removed from my collapsed lung. My wife will have much more memories of that time but thankfully I can’t remember much of it.

In the SIU for the next 10 weeks I was completely bedbound.  The following 7 months I was mainly in bed and was able to get up for short periods. This was until I was able at ten months to fend for myself more.

The first thing I had to get over was the embarrassment of having my bowels done by someone else. Being young and previously very fit and in the Royal Navy I had never experienced illness at all nevermind the degree of help I needed. It was a weird feeling having all this done for me. It felt like coming around slowly from a deep sleep and having to learn everything anew. The nurses always treated me with respect…they ended up more like friends than nurses.

Because my right leg was also badly injured and held together by external metal rods I was on a special pressure bed that folded in the middle and was turned every two hours. I remember longing for the two hours to be up because I was in so much pain. Just being turned and put in a different position was heaven.  Every two hours…turn…even at night. Pain…turn…pain…turn. This was all to prevent pressure sores. It was it’s own sort of hell.

Buildup milkshakes were all I could manage…I had no appetite until they gave me a drug to have an appetite I think.

Lukewarm tea from a plastic cup with a straw…bloody awful. I still hate eating in bed today…it reminds me of that time I never want to go back to.

I remember my hair getting manky, I couldn’t even go on the stretcher shower because I couldn’t be moved from the bed at all for those first ten weeks until my spine fused together.

My hair grew outwards into a bushy mess. Cleaning my teeth was a challenge. I hated feeling scanky all the time.

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I remember the heaven when a nurse (Yvonne) washed my hair in bed with a special bowel.

I remember crisp packets getting hard to open, thinking they’d used stronger glue and then realising it was me getting weaker.

I remember thinking when I can get up I will get a fast car and find a brick wall. I couldn’t see any future for myself. Until I met another patient who was in for respite care who could only move his head and one arm if it was in a sling. The nurses took him out to the pub for a drink and the next morning the only place he could feel (his head) was hurting and he never moaned once about being in a wheelchair or anything so I thought…if he can be happy with just his head, I’ve got my arms and everything  so what was I moaning about! He really was a turning point in my mind to acceptance that I was paralysed and it is forever.

Visitors came and went. I was always pleased to see them.  Sometimes it was a blur…being on medication, days rushed by and also dragged unbearably.

Routines happen quickly…breakfast, bowels, bedbath, teatime at ten, dinner, afternoon tea with a biscuit or cake. Drug rounds. Visitors. Then there was evening meal, supper with a sandwich. I wonder now how I lost so much weight…I was like a skeleton back then. (I’ve managed to put it back on…ballast…haha)

After ten weeks I was moved to a larger ward in the unit. Being in an old-fashioned open ward there was always someone to talk to. I never really felt bored but I was frustrated. The nurses were excellent apart from one…but there’s always one isn’t there! I always knew they were there to get me well enough to cope with being in a chair and helping me to learn to be independent again.

The charge nurse was probably the most influential in my recovery. He was a bit like marmite…you either liked or hated him. I liked him…he was straight and he always told it how it was. If I did something wrong (and being young and stupid I did) he told me off and then it wasn’t mentioned again.

I made a good friend on this ward…one I value so much and speak to every week. We kept each other company through those few months and helped each other along.

I can’t remember any feelings. They had me on drugs that I didn’t even realise until 5 months in. I asked what the pills were. One was an antidepressant. So I told them to shove it. But I suppose they must have helped. I stopped there and then. I had a bad few days feeling really crap and miserable. I went off my food. I just wanted to pull the sheets over my head and sleep. It passed. I think by then I was more mentally strong to be able to cope with it all without the medication.

So the past twenty nine years I have had a fair share of being confined to bed again with short illnesses etc. But never as long as those early days. I also sleep poorly and can never really get comfortable in bed until the early hour when I can get some relief from the twitching, spasms, pain and irritation from every tiny crease in the bedsheets. I still have to turn, with my wife’s help, every couple of hours to prevent bedsores…but really it’s second nature now.

So my bed is something I both love and hate. But I am grateful I have a bed…somewhere warm and safe…with two cats, a dog and a wife I never feel lonely either.

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I have written and remembered this to help discuss beds and being bedbound for the #beddingout Campaign by Liz Crow http://www.roaring-girl.co.uk/

Written by carolecarrick

March 27, 2013 at 7:53 pm

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BBC Video: Iain Duncan Smith ambushed by blind disabled protesters at Edinburgh workfare conference

Written by carolecarrick

March 27, 2013 at 5:03 pm

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Written by carolecarrick

March 27, 2013 at 7:40 am

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