Friday, January 20, 2012

So How Am I? By Sue Marsh #spartacusreport

Well I can confirm categorically that Arbeit does not macht you frei.

Quite the opposite in fact. Far from "freeing" me, work has put me in a hospital bed chained with plastic tubes.

I'm almost certain none of the politicians so glibly deciding our futures know what the "spoon bank" is. If you have a long term condition, then you only have so much energy for any given day. When it's gone it's gone - WIGIG. Now that doesn't mean you can't borrowenergy, but just like the deficit, it has to be paid back.

When you borrow energy (or "spoons) you are paid in adrenaline. The adrenaline convinces your body that all is well. OK, you're a little too shrill, a little too twitchy, you're eyes a little too bright, but I'm sure Mr Grayling wouldn't have noticed any of that as he sat talking to the composed little scrap with her make up just so.

After a while, your natural instincts try to step in. "Go to bed" - the thought unbidden takes you by surprise. "Just close your eyes" - the siren call of rest as the adrenaline ebbs for a moment.

In my case, I pay in immunity. As the weeks went on, I got a cough here, a splitting headache there so piercing it made me cry. I got neuralgia, sinusitis, the cough turned into a chest infection, I got spots in front of my eyes, atrial fibrillation. Little immune complaints popping up all over in protest at my unsustainable spoon debt.

And then I stopped.

When you stop, the adrenaline ebbs away. For a day or so you feel sad, but you're not quite sure why. Then you get sick. Really, really sick. the adrenaline blanket that had been keeping all those "niggles" that you ignored through gritted teeth at bay, is stripped away. My chest infection turned into something worse, my temperature started spiking, my face puffed up like a football, My ribs started screaming in pain.


And here I am. In a side room on an acute medical ward. So infected, such a blob of immune horridness that I am not safe to be around other humans. I must be screened for scary things, because scary things happen when you are "immuno-compromised". This is not the face you all saw all week eh?

I'm not the only one. We have at least two other spartaci that I know of in hospital - one in intensive care. Another collapsed two days ago after spending a week, non stop, sitting at his computer, building us a spreadsheet with one painful hand. Kaliya hasn't been able to speak for over 3 months as her oesophagus has collapsed on itself.

This is the reality of sick and disabled people fighting back. I can put it in very stark, unemotional terms, but that is what it takes. There is no doubt at all that some of us did this knowing that our lives were at risk. What on earth is happening in 2012 when sick and disabled people will go to such lengths to be heard???

Yet most of our media sit comfortably in their glass and chrome towers, desperate to be convinced that we are just a few snatching, greedy, shirkers. All we want is to "protect our special interest group" or "not take our share of the pain" You could see the irritation last week when they were forced  to report that all may not be well with the welfare reform bill. Most took the government line. "But Sue, you must agree that DLA needs reform?" When I knew they didn't have the first idea why it might - hadn't read the research, hadn't done their job.

They ignored the coalition we built, they ignored every major charity backing the Responsible Reform report and issuing press releases and statements in support. They ignored the rush of Blairites to confirm that actually, some very bad things are happening. Not one did a serious piece on our research. Not one. they all wanted "stories" - the soldier with his leg blown off refused benefits, or the cancer patient who dies just hours after being found fit for work.

We wouldn't give them. We refused. Because that's not what the Spartacus Report was about. There were at least 5 serious news stories in it, and if that wasn't enough misery-porn for them, then our story will just have to wait.

I'm "in the best place" - antibiotics and saline drips and painkillers are oozing into my blood. Everyone is very kind. The nurse who admitted me knew who I was and actually grabbed my wrist to check my name - "Are you Sue Marsh??? You??"

I have no idea if we will be able to do what we did again. We knew it was unsafe. At some point, we need the more able to take some of the load. We need them to see what is being done in their name. We need them to act. Because we can only act for so long.

25 comments:

Lexia said...

Great post. Hope you feel a bit better soon. Thanks on behalf of everyone who is disabled in whatever way.

Ado 16 said...

Hope you pull through it. Virtual hugs and Best Wishes.

Kate said...

Sending love.

Val Lewis SDN said...

Sue -your words strike so many chords with us all in Shropshire keep fighting - positive thoughts are being beamed your way

WendyCarole said...

hope you feel better soon xxx

Anonymous said...

Puts paid to the " all in the mind " myth backed up by the psycho social pseudo science that originates from various sources and the " work will make you free " magical cure for all ills gloss from Ministers in the media .

Even if the powers that be wanted to " treat " people by motivating them with incessant mantra or therapying them out of their skulls so they'll believe all this nonsense ..with the best will in the world people will suddenly become ill .

All this vilifying claimants as worthless scroungers rabble rousing in the tabloids is to soften people up . Dabbling in some very dangerous areas here ...we all know what happened in the 1930s .

Anonymous said...

Hi Sue..
every time you or Kaliya is even more ill, we all come on, quite naturally, to wish you to be as well as possible & home again... We don't come on & say we hope you make it, though at the back of all our minds we have that worry about you & each other...
Real love & concern for each other has grown in the spartaci community but the reality is we are a virtual community unable to physically be there for each other..
The truth is that Sue & Kaliya & others can't delegate because delegating takes spoons & so many of us are running on empty... Will DWP say we have done it to ourselves, that this desperate plea for fair reform is actually 'illness behaviour'?
Sue you talk about those days after using spoons & adrenaline where we feel a strange sadness before we collapse.. We have been quiet since the DLA vote & it's not just because we are horrified & disappointed.. it's also because we are exhausted... I have been in that sad, dark' unreal place since the Monday of the ESA vote & collapse may or may not be imminent but I am totally on empty & so frustrated that actually I can't do what I want which is to show the disgrace of the PiP which is not a reform of DLA but an interrogation list created to shrink as few as possible to fit... The truth is that last line is the sum of my opposition right now...
I think the worst part is knowing that Mp's etc know what is happening & what they are doing, they know we know & they know that the majority do not know...
Every day & night that I tweet or leave a comment like this I am terrified that I have been put on a list as a baddy when actually i can't stop asking them to be fair..
Again you could ask if this obssession with responsible reform is illness behaviour but you must also ask how it was triggered & why there is no resolution to it?
In the PiP mobility descriptors if you can 'walk' 50 yards with a stick you do not qualify for standard rate (low)... There isn't even a mention of mobility problems caused by Mental Health illness or seizuers etc; or of so many other conditions.. If you are blind & can't even feel your legs but can flannel the top of your body you are in trouble...
So let's be clear the government is not taking disability/illness support from those who 'least' need it! Otherwise Sue almost certainly,would not be where she is today!
So how do we get support from people with lots of spoons?.. There is so much that we need to do now & we won't be able to do it.. We spoonies try not to be negative: "We didn't get the vote but we did well"... "We'll be ok after a rest"... The trouble is we are not ok & though they said on 'This week' last night that we are now in the spotlight they did not mention ignoring us for the last 2yrs or in fact that it came too late...
I'm sorry for going on but Sue's husband & children have a wife & Mom seperated from them right now & Kaliya is struggling on quietly... & the rest of us are rounded up ready to be pounced on like the cat's mice...
I am spartacus... Nita

Anonymous said...

Sue, I thank you from the bottom of my heart and wish so much that i could spare a spoon or two to help you and your family. What you, Kaliya and others have done for people like me is outstanding and you have done us proud.
Please look after yourself now.
I admire you guys and am so grateful, Hannah.

J. Hill said...

I hope you feel better soon. You have given disabled people up and down the country so much.

It is one of the bitterest injustices in life that people who give so much should suffer for it in this way.

Carole Carrick said...

Thank you Sue for telling it like it is. You and the others who are sick right now are in my thoughts. And I am sharing this everywhere...people NEED to see what happens when sick and dedicated people speak out and are ignored and then end up even more sick because of it. Thank you Sue.

Carole Carrick.x

Tracy N said...

Thank you Sue & Kaliya and everyone else who has for their own health in jeopardy for us all. I too wish I had spare spoons to share around....

After the vote on Tuesday I also felt totally exhausted and I had only sent a few emails, tweeted and followed the story, the debate and the vote, so can only imagine how you all who worked so much harder and gave it their all must be feeling (having been there myself when I was "fit for work").

I cannot thank you all enough for all you've done. You have inspired me and I want to carry on helping in any way I can, no matter how small.

Just concentrate on the personal fight for your health now Sue, we Spartaci will be ready and waiting for you and will carry on as best we can.

Look after yourself Sue! Sending you lots of (((HUGS))) and positive thoughts from a fellow immuno-compromised friend!

Tracy x

wildcandytuft said...

Last night on BBC1's This Week a very articulate young lady Francesca Martinez said that disabled people were having to put all their time and energy into protecting their basic human rights. It shouldn't have to be this way. I feel very upset and guilty that you are so poorly and lying in hospital because you were brave and found strength you couldn't spare to speak up for the rest of us.

Why don't they see that if you forced to push yourself that sooner or later you will either crumble physically or have a nervous breakdown.

Wishing you a speedy recovery. Do please get well very soon x

Anonymous said...

Dear Sue,

I want to wish you a speedy recovery, my thoughts are with you. Thank you so much for all the work you have done for us at the cost of your fragile health. You are and the others are heroines of our times and I hope that you shall be recognised as such. I am chronically ill but do not claim DLA, however that doesn't mean I shouldn't care or cry out in despair from the top of my voice at what is being done. I wish I had the strength and energy of the well to make huge waves, as you have done.

Alan Bruce said...

Sue, get well soon thinking of you every day.

Sioux said...

Dear Sue,

Thank you for all your hardwork.

I will be adding you to my distant healing prayers. I wish you a speedy recovery from your recent "crash".

No one should be put in the position where to retain the basics of life/benefits they should have to work themselves in to a hospital bed especially those of us who are long term sick &/or disabled.

It's time the British public woke up to the lies of the condem government. The fact that a man in a coma has been found "fit for work" should show that something dodgy is happening with this government and ATOS.

Do the condems and the british public really want us to die/disappear? More and more i believe they do.

Well guess what - we are not going to.

i will keep doing what i can especially sending stuff to my MP, MEP, etc etc. Posting and passing on information, helping people fight their corner etc.

Love and huggggs,
Sioux

Anonymous said...

As has been repeated many times, the measure of a society is how it treats its most vulnerable members. Using that criterion, this country and this government do not score highly. At the end of the day, it's all about saving money and following the rules of the ruling class in this country; that money is taken from those who have the least and kept by those who have the most. Also, by picking on the most vulnerable in a society, in this case the sick and disabled, as we know they are the least able to stand up for themselves and be heard. But conversely as history shows us, by vilifying a certain group in society; this can help unify diparate groups so making a society more cohesive and this is clearly the Government's tactics.

Therefore it is only the most brave who despite their own illnesses make themselves heard and we thank and applaud them for their efforts.

I hope you feel better soon Sue and escape hospital.

Stitchinwitch said...

Sending you well wishes and thanking you so much, you should not have had to do this.

Anonymous said...

Seen this one about a patient, in a coma, who's been deemed capable of work?

http://www.rightsnet.org.uk/forums/viewthread/2496/

cogidubnus said...

Bless you Sue from a man who has the good fortune to be relatively fit...

Anonymous said...

Thanks so much Sue for all you have done its truly amazing and your one hell of a lady. I hope your feeling much better soon I'm sending all good healing thoughts and prayers your way and many gentle virtual hugs.

Daisy said...

Thinking of you and hope your spoons are back in order soon! I hope the government are proud - they're sick and twisted and can't see it, they can't see what they're doing. If ignorance is bliss, the ConDems are orgasmic.

telemetry said...

Let's not get involved in the business of comparable suffering.
Let's remember there is always someone a great deal worse off than we are.
Let's remember that dying is easy but living is scary in this neo-fascist world.
Let's keep ourselves immersed in the greater cause and stress and torment many,many are going through.
Let's not turn this into a stamp of approval of authenticity of illness. A heriarchy of ailments. That will be the end.

Cassandra said...

"Well I can confirm categorically that Arbeit does not macht you frei."

Funny you should write that, Sue.

I've just been perusing Richard J. Evans's book, The Coming of the Third Reich, and felt a strange sense of deja vu when reading passages like these:

"Social workers and welfare administrators had already long been prone to regard claimants as scroungers and layabouts. Now, encouraged by new senior officials put in place by Nazi local and regional administrations, they could give free rein to their prejudices. Regulations passed in 1924 had allowed authorities to make benefits dependent on the recipient agreeing to work ‘in suitable cases’ on communal job schemes. These had already been introduced on a limited scale before 1933. Three and a half thousand people were working on compulsory labour schemes in Duisburg in 1930, and Bremen had been making such employment a condition of benefit receipt since the previous year. But in the dire economic situation of the early 1930s only a small proportion of the unemployed were covered - 6,000 out of 200,000 people on benefit in Hamburg in 1932, for example. From the early months of 1933 onwards, however, the number rapidly increased. Such work was not employment in the full sense of the word: it did not involve health insurance or pension contributions, for example, indeed it was not even paid: all that those who were engaged in it got was their welfare support plus, sometimes, pocket-money for travel or a free lunch..."

"Local administrators were particularly stingy, since local authorities bore a sizeable proportion of the financial burden of welfare payments. They frequently demanded that claimants should hand over their savings or their property as a condition of receiving support. Welfare snoopers reported on hidden sources of income and encouraged neighbours to send in denunciations of those who refused to reveal them. Moreover, welfare agencies, lacking the staff necessary to process a large number of claims rapidly, caused endless delays in responding to applications for support as they corresponded with other agencies to see if claimants had received benefits previously, or tried to shift the burden of supporting them elsewhere. Thus, the Weimar welfare administration quickly became an instrument of discrimination and control, as officials made it clear to claimants that they would only receive the minimum due to them, and enquired intrusively into their personal circumstances to ensure that this was the case..."

Best wishes for a speedy recovery and many thanks for all your wonderful work!

Anonymous said...

Thank you for all that you are doing. I'm praying for you and I wish I could help.

Margaret

Anonymous said...

Thank you for all that you are doing. I'm praying for you and I wish I could help.

Margaret