Tuesday, May 01, 2012

Do You Know What You're Asking? #BADD

I remember it vividly. My last day at work. Well, I say last day at work, more accurately my last day trying to go to work. I was yet to be diagnosed with Ehlers Danlos Syndrome and very unsure whether I was actually ill or somehow doing it to myself as everyone around me believed. 'Just try a bit harder' was my mantra, acutely aware that the job I'd worked so hard to get was in jeopardy if I didn't manage to overcome my sickness absences.

So, like any other work day I hauled myself from bed, trying desperately to ignore the shaking and waves of nausea. Dressed, limped to the car and set off. Still feeling terrible as I drove I desperately attempted to use mind over matter and convince myself I was fine. Turning onto the motorway, pulling into the fast lane....so far so good.

Until, without any warning I threw up. Repeatedly. Forcefully. Still in the fast lane, still travelling 70 miles an hour. Except I was now dripping with vomit. Everywhere. My clothes were soaked, the inside of the windscreen was running, and the steering wheel was overflowing with puke.* I was so focused on reaching work that I carried on driving. Thinking somehow, someway I could sneak into the building, clean myself up and do my day's work without anyone noticing.

It took another junction and the cold, congealing vomit I was sitting in to bring me round to the concept that there was no way of hiding this. I was saturated and stinking, didn't have any spare clothes with me and even working in an isolated office knew I could not get through the day without someone attempting to track down the source of the foul smell.

In that moment, as I pulled off the motorway and turned around to go home and clean myself up that I knew. This was the end of my job. My employers had been as accomodating as they could through all the failures of access to work, even trying to provide some protection by 'medically suspending' me in the hope the equipment ordered by AtW would actually turn up and had given me more paid sick days than I'd managed to work. Astonishingly they were still willing to find some way of employing me, but I still knew. This was it.

Somehow, despite my not having worked long enough to be entitled to an unpaid sabbatical my employers managed to arrange it. I had 12 months, after which I'd be guaranteed a job at the same grade and same hours I was working when I left. Not my job to go back to, but it would be a job. 

A year later I had been diagnosed with EDS, but I was far from able to return to work. I'd done my best to try and learn to cope with my condition but I was too ill, both mentally and physically to stand a chance. Decades of mistreatment by disbelieving medical professionals meant I found it impossible to find a rheumatologist, pain management or physiotherapy. I had no way of knowing if I would ever have that kind of support and no way of returning to the workplace.

Eventually I started to find my way back to living. I found the confidence to join an online forum for others with Hypermobility EDS, a small, supportive community rich with emotional and practical advice. I was so ill I had to learn to walk and talk again. Alone, without any professional support. I was so weak when I started that I couldn't even tolerate a full minute sat on a wobble cushion. It took months of adding 30 seconds a day to the wobble cushion time before I could even consider the challenge of relearning to walk. It would be several years before the magical day I managed to make it the 50 meters or so to the corner shop and buy myself some chocolate. It took four years to build enough confidence to consider starting this blog.

After five years I started to dream about working again. At various times I tried New Deal for Disabled People and Pathways to Work. They would talk alot about CV's and two tick schemes, but when I asked about professional retraining or whether they had links to employers willing to employ home workers I would be directed to photocopied job adverts for jobs I was physically incapable of ever doing. So, I wrote, I managed my condition, I learned all I could about anatomy, physiology, physiotherapy, speech therapy and I worked at it. Every day.

I learnt I could manage my symptoms if I listened to my body. I learnt that I could be happy, happier in fact than many of my able bodied friends living the life of career, marry, babies that like every other middle class girl I was supposed to grow up to do. I learnt of my community, our history, our common challenges and our differences. I learnt that I could pay forward the support which had been offered to me by a community of strangers. That in doing so I could feel worthwhile, like I was making a difference and contributing to society. I learnt that I could survive the bureaucratic insanity of the NHS and welfare state. I learnt never, ever to trust welfare advice after months of receiving the incorrect benefits plunged me into debt. I learnt to learn the rules myself.

It started to feel as though there was light and hope. And then, the Coalition government were elected. I learnt that they intended to target sick and disabled people's vital support in a way more extensive than any of us could have dreamed. Along with a tiny minority of our community I learnt that this targetting was dreamed up by people with no concept of living without vast resources, no idea of the reality of life with chronic health problems or the huge, yawning chasms in the existing 'support' systems. I learnt that these decision makers were clueless, which made them callous and cruel. Cruel enough to even consider condemning some severly disabled people to their beds.

Over the next two years I learnt exactly what determined, angry and organised people can do. I learnt that those of us who've learnt how to pick ourselves up from the darkest of places, over and over again, will always find a way to do so again. I learnt a sense of fierce protectiveness for others in my community, for those more sick than I, for the children yet to join us, for those so utterly voiceless that being tortured is their daily experience.

I made new friends and learnt how powerful a bond people can form with each other through the commonality of exclusion. We learnt new skills, politics, strategy, PR, policy and precedent. We had all learnt that most basic of lessons; that its always worth a try. With this in mind we ran national campaigns, lobbied parliament and Peers, developed our own media, rationalised and reasoned. When we were ignored I learnt we could come together to produce our own evidence.

The Spartacus Report was born of desperation and tears. Speaking to Sue on the phone she mentioned we should probably pay more attention to the DLA reforms. I cried. And cried, and cried. With exhaustion and hopelessness. And so we agreed. The one with slightly better health than the other would lead, and the other donate brain time every day. And so we did. Others joined us, all of us working desperately, primarily from bed. We had no idea we were creating an entirely new form of protest, a 'from bed activism' or an entirely different, radical new way of working for sick and disabled people. We had no idea because we could barely get through each day.

Sue's in hospital now, being fed by tube and waiting for surgery. She's my friend so I don't want to think about how poorly she really is or what that might mean. It goes both ways, she doesn't like to think that about me either. Yesterday we talked on the phone and tried to remember last year. We recalled multiple courses of antibiotics for both of us. For me a plaster cast on my wrist, a serious fall from my wheelchair, the day my neck became so unstable I feared waking up a quadriplegic, the rotated vertebrae which still move around disconcertingly and of course the having not been able to speak properly since October. We remembered that there was much, much more we couldn't remember. We remembered the days of having to keep hanging up the phone as neither of us could get off the loo, of reaching a point that we wouldn't bother to hang up while one of us vomited, and the days one of us was so fearful the other might die that we'd just stay on the phone. In case. So there was someone to phone an ambulance.

Throughout all this we both tried to convince ourselves we were fine. That somehow, being in pyjamas, usually opiated more than halfway to oblivion while we worked couldn't damage our health. We worked harder at convincing ourselves of that than almost anything else. That, and that there would definitely, totally be some way, somehow from this that we'd be able to earn enough working from home to not have to rely on benefits. That we'd find an employer somewhere who wouldn't mind the sick. Or the poo. Or the medication. Or the occasional declarations of wanting to be a duck.

Unsurprisingly it hasn't ended brilliantly for either of us. 

Last night my larynx collapsed again and I choked. Alot. Unattractively, coughing and vomiting into a bucket brought to my bed. I'm staying with friends, at home I'd have coughed and vomited onto my bed and had no choice but to sleep in it. Here I get a bucket brought to me. That's spoonie luxury.

The thing is, I'm with friends in Birmingham so that I can go to Naidex. The idea was to go and look at wheelchairs, then meet up with other friends for lunch tomorrow. I planned it all very carefully. Drove here on Sunday, spent all of yesterday resting. But then there was the choking thing. And the definitely aspirating some of the vomit thing. Then the waking at 6am to do some full blown vomiting thing.

So, now it's gone 10am and I'm still here in my slightly sicky smelling pyjamas. There's definitely puke in my hair, so I can't go anywhere without washing that out. I also can't get it together enough to have a shower and wash my hair, let alone find the skills to control 2 tons of metal on the roads, so there won't be any wheelchairs for me today. Instead I'll stay here on the sofa, I'll try not to worry too much about my sick Suey in hospital, or any of my other poorly friends and force myself to focus upon the lessons learnt in the past nine years.

And I'll do my absolute best not to think today about the 40,000 sick and disabled people deemed fit to do some work at some point, with the right support, who lost their benefits yesterday. The people who've worked hard, paid tax and national insurance. The people with conditions like cancer, Parkinsons, MS or bi-polar. The people who's contributory Employment Support Allowance ended yesterday when the twelve month time limit was brought in to apply retrospectively. I'll try not to think of them, not to think of the potential problems to come when Personal Independence Payment comes in. I'll try not to think, with guilt of the nine years I've had to learn to adjust to living life with both disability and chronic ill health. I'll try not to think that even with all that experience, the ability to manage my symptoms, that reality just doesn't work that way. Try not to think of however hard I try, still being too sick and disabled to function.

I'll try not to think any of that, because if I do, all that will come is fear and tears.

And I'll try hardest of all not to think if politicians really know what they are asking sick and disabled people to do. I'll try not to think that, because the terrible, terrifying answer is that yes, they do. And that a ruthless, brutal form of Darwinism means they have every intention of doing it anyway. 

*Huge apologies to Hossylass, the next owner of that car, who is hearing the puke story for the first time and probably realising that it's the source of the crud it was impossible to clear out of the steering wheel! 


misspiggy said...

oh god, so sorry. Saw your limited Tweets and wondered if anything was up. Don't know how you manage to get it together enough to write like this. I really hope some press tweeps pick this up, because it needs to be seen more widely.

Cmbpanda said...

This is such powerful stuff. We really need to get some friendly media. We are fast heading back to the 19th century. It's so scary.

sad times said...
This comment has been removed by the author.
hossylass said...

Fear not dear friend, the sort of crud I can generate would overpower any previous crud.
Amusingly, or not, I had the same vomiting experience but driving a large lorry, some 200 miles from home.
I can vouch for the sad sinking realisation that you are sitting in a pool of vomit - still, we have to laugh (!) Otherwise we would stand accused of being bitter crips as well as benefit scrounging scum.

I'm off to sniff my car now... it may be the highlight of my day, though it should add something to the occasion if the air bag ever goes off!

Lynda Phillips said...

Bedivism is a great term but I'm more likely to come under bogdivism more...

Hope you and Sue feel better soon...

Findlow said...

Extraordinarily powerful and moving, Kaliya. As always, in describing the absolute horrors that you have to go through, you also manage encapsulate so much that is experienced by people with a wide range of chronic conditions and disabilities.
I saw this article link on a tweet from Patrick Butler in the Guardian today, so I sincerely hope it will reach a wide audience. And most of all, I would love to see IDS, Grayling, Miller and co., having to clear up all your vomit, as Workfare, for the rest of their lives...

Lisa said...

Nice to know I'm not the only one to have barfed into my own lap while doing 70 in the fast lane.

Though that was a tramadol side effect rather than a direct result of any of my conditions.

Jane said...

Kali, you are amazing. I have to say that pain is horrible, morphine-induced nightmares are horrible (I have them nightly these days) but vomiting is thankfully a symptom I don't have to suffer. I have huge respect for people who can deal with symptoms like that and still carry on - and 'carrying on' is an understatement for all you do and achieve - and the same goes for Sue, currently so ill she can't face a cup of tea.

I'm sending this to my MP - to follow on from the link to the wearespartacus response to the PIP consultation!

Take good, good care, Kali xxx

Anonymous said...

Kali you are so amazing, you and Sue are both just amazing and always know how grateful the entire disabled community are to you and Sue. There are no words that will totally cover it - But you are just inspirational you two - Just so amazing.

I wish that this evil Govt would understand that people with life long conditions that are deteriorating ones, just wont get better cos ATOS deems it so.

I have Multiple Sclerosis and I would so love to be the person I once was - But I am not and trying to adjust to the loss of being the person you always thought you would be to this shell of yourself is one thing - But at the same time being scared witless by ATOS and WCA who state you can work happily if you can move an EMPTY cardboard box. That is so ridiculous words fail me. What company would employ someone to move empty boxes...? I live in fear - Every envelope fills me with dread like I am getting a letter to hobble the green mile to my demise. That is just how it is.

Reform is one thing but this is al all out attack from a heartless govt who refuse to go after the rich who owe millions and billions in taxes - But would rather attack the weak who don't. Under the lie of so very many fakers - Its all lies and Cameron doesnt care for he is a multi millonaire lining the pockets of his friends by dismantling the NHS and filling their pockets as they all have a hand in the pot of the private sector. Sending the weak to their deaths does NOT make the UK the mother country - It makes the UK an inhumane country who wont even allow people who are fighting illnesses and will be forever to be ill in peace.

I am sickened to call myself a brit!

But You and Sue are so inspiration - In this past year you two have been the ones to give me the only glimmer of hope in this very black tunnel that I have had!

You two are such shining lights - You are both just wonderful!

Hayley said...

Oh Kali - hoping you and Sue have far better times soon - thanks for carrying the banner for all of us :)

GirlWithTheCane said...

You inspire me.

- Sarah

hossylass said...

Listen Peeps, I know this will sound harsh, but you have to start some banner waving yourselves.

Its the pressure of carrying the banners that compounds our disabilities and illnesses.

Dont lean on us too hard because we do crumble.
Dont rely on us too much because we are pretty unreliable.

We try hard on our "better" days, but that only increases the frequency of our bad days.

So come on, sacrifice a bit of your "better" time and help us to make a bigger impact.

I suspect I am preaching to the converted here, as I suspect the people who support Kaliya and Sue and all the other hard working activists are equally hard working but are amazingly unsung and unrecognised.

I salute you who are busy doing, but for those who are expecting that Sue and Kaliya are a replacement for your efforts than I have some degree of annoyance, because whilst you are saving your spoons to spend on yourself you are stealing spoons from others.

mrswupple said...

I can't cope if I vomit, luckily very rare so I think you're extra brave. Thank you for all the work you've done. I can't string words together these days but thank you again.

spirit said...

omg your description of being on the phone for each other (as you were both so ill) reminds me of me and my dear friend a few months back...sadly not long after she died...i hope that you and sue are soon feeling better, and thank you (as Haley says) for carrying the banner for all of us .

jace said...

Hossylass is right, activism with scarce spoons has to be a relay race. We can't rely on Kali and Sue and the few, all of us can do something. All of us can pick up a baton we feel comfortable with for a while.

Come to the wearespartacus.org.uk/ - the Spartacus blog,
to the www.spartacusforum.org.uk/forum/index.php? - the Spartacus forum, and if you're on Facebook, www.facebook.com/groups/wearespartacus/ FB Spartacus.

Check it out, look around, see if there's something you would enjoy to get involved in. It means making new friends, and as Kali says, paying forward and finding purpose. Together we are strong. Hope to see you soon!

hossylass said...

Thanks Jace...

If I sounded narked, then I am.
Again this week has been dedicated to saving not my arse, but the arses of thousands of people I will never meet, and who will never know.

I wont bother axplaining, but the next "grateful" spoon thief might just get both barrels.

Alone we whisper, together we shout means that everyone has to raise their voices, not just hand out a few thanks to those who are literally killing themselves, destroying their lives, relationships and finances to tackle these issues.

If people want to see activists and campaigners in an early grave then they are going the right way about it... weeping crocodile tears when one of us writes about how ill we are is no help at all.

And if anyone thinks that they are not up to it, then I have one piece of advice - try.
Just try.
Try as though your life depends on it.
Try because someone else's life depends on it.

Our voices are not being heard because we are not shouting together loud enough, and the majority are leaning on a very sick, ill, exhausted and disabled minority to do everything for them.

Personally I am having a really, really shit life trying to save everyone's arses.

I'm tempted to list the people I know who have spent money they cant afford, spent spoons they didn't have, lost hours doing activism instead of spending it with loved ones, who have forgotten to eat, gone without sleep, who have driven miles in agony and avoided meds to keep a clear head, who have put themselves out there knowing that they will suffer a backlash, been watched and recorded in secret, who have literally wasted their lives away for others.

And the others say "thanks" and "where would we be without you?"
The answer is that you would be paddling your own fucking canoe alone, unless and until you decide to do something yourselves.

Spoon thieves - you know who you are.

Lynda Phillips said...

At this point in time I blog, if I can, trying to untangle the web of neurological mess that was my short term memory... My life changed in January 2010 forever, no get out of jail free card, no passing go and certainly not collecting £200!

Spoons? Please explain...

I'm a writer and can offer my services (with someone reminding me what I'm 'sposed to be doing 'cos my STM is worse than that of a gnat). My LTM is mostly intact so knowledge already gained and drummed in to me is fairly accessable even under huge levels of anxiety, in fact I write better that way... The only media I'm not comfortable with is video. I do have a vid cam and software specific to that but if you ask me to use a mac for editing I 'run' away screaming...

I have tentatively offered my services to a few disabled activism groups but seem to have been ignored in the rush for the pecking order which, incidentaly, doesn't interest me at all unless I'm asked to do all the dogwork...

To 'prove' myself I've included a few links to recent posts from my main blog, apologies if you may have read some of them elsewhere as I forget where I post them lol...

January 17 2012:


February 24 2012:


Well, this is me and I'd love to help, just ask :)

Susan said...

Without people like you and Sue, giving our concerns a strong voice I'm sure things would be worse. Thank you for all the effort you put into your writing, and I hope you feel better soon.

Anonymous said...

Your amazing X

Carruthers said...


You have a right to be narked, and I will put my hand up as one of those who could do more.

BUT - can I beg you not to use terms like "spoon thief"? Or at least not in public. I've heard too many people referring to anyone in receipt of benefit as a "thief". And once George Osborne's little wheeze of telling everyone how much of their "hard-earned" money is going to wasters and fraudsters and scum, then we'll hear a lot more about how all disabled people are taking money "stolen" by the tax man.

It's not going to be pretty.