Wednesday, 11 January 2012

From-Bed-Activism

Can't type much, but something extraordinary happened just now on twitter.

Someone pointed out how they helped from their beds (we decided beds on sofas count) and suddenly, everyone is saying that even though they were bedridden at times, they still did what they could to help the #spartacusreport

Will you leave a comment below if you did this? Two of our #spartacusreport helpers are in hospital seriously ill, I escaped by a whisker and Kaliya might yet follow them. One of our most brilliant supporters has not answered us for three days. We're very worried.

I think perhaps we ought to start recording what this has cost people.

76 comments:

  1. I am now on my big huge comfy chair where I live when not in bed (or occasionally out) having been helped here by my brother, I am really, honestly exhausted by the whole thing. Feel very week, could sleep forever.

    ReplyDelete
  2. I spend all day on my sofa. I overdid the Spartacusing on Monday, and slept most of the day on Tuesday as a result. I'm still exhausted. Love and healing thoughts to Sue, Kaliya, and those in hospital.

    Margo x

    ReplyDelete
  3. After spending all of Monday flat-out working on the Spartacus Report (emailing it to my MP, three Lords and the Help Me Investigate site for investigative journalist plus some 420 tweets or retweets), I was shattered on Tuesday and spent most of yesterday in bed, only getting up 4pm to go out to honour two social engagements. I'm still spoonless today and working from bed again. I've noticed that while my medication often leaves me tired whether I'm busy or not, the tiredness turns to exhaustion when I do a day like Monday and am super-busy.

    ReplyDelete
  4. I spend most of the day (22+ hours) in bed, and all my activism has to take place here because I can't concentrate on sitting up and doing anything productive at the same time. I also keep falling asleep while doing stuff.

    ReplyDelete
  5. I couldn't be anywhere as productive as I am (which isn't that much, but it's something) if I didn't have things set up for me to use a computer while lying down on the sofa. I'm laid more or less flat most of the time. This reduces my vertigo to the point where I can get things done, and conserves enough energy that I can get up, even go out, to get other things done a little over the course of the day.

    ReplyDelete
  6. I have been mostly campaigning from my bed for more than a decade - it's amazing what one can do! I've run entire campaigns from here :) :D

    Didn't realise the new hashtag #frombedactivist would be so popular. I was just so bloody happy to see @Onlyfluffyone mention camapainging from bed for a change.

    I had no idea there were so many of us.

    When times are hard.. when we're sick or down.. when we and others think we're useless, when I hear horrible terms like 'bedbound' 'housebound' or whatever.. I just remember what I can achieve from my bed and it always cheers me up and fuels my power.

    I achieve more than I ever did as a nondisabled person. I am SO alive!

    Dennis Queen (was Clair Lewis)
    Disabled People's Direct Action Network

    ReplyDelete
  7. i didn't do much but booked the family laptop for monday. this meant my two..beautiful..neuro-atypical kids bouncing on my bed..and sometimes my head all day. their favourite bit was the £290 bit. Nailbiting.
    Ended up having a meltdown at 11.30pm at the sheer injustice of a mentally ill dyspraxic woman attempting to lobby people.
    Wasn't easy for someone with no self-esteem but knew I wasn't alone.
    Many thanks team #wrb :)

    ReplyDelete
  8. I have only been able to do my emailing in support of the campaign because I've been on my Xmas holidays - wouldn't have had the spoons if I'd been working. But have spent the last two days in bed.

    Monday I did quite a bit of emailing re #Spartacus report and did a big piece of urgent work that I had been too ill to do before the holidays, staying up till the early hours of Tuesday. Then I came down with a virus and have been more or less bedridden Tuesday and today.

    Was due to go back to work today but have had to take the day off sick. So at least that's freed up a limited amount of time to send more emails to the Lords!

    ReplyDelete
  9. "If you can't do it in bed... it isn't worth doing"!!!! : )
    Ms Chievous

    ReplyDelete
  10. This comment has been removed by the author.

    ReplyDelete
  11. The Web, especially the mobile web, has opened the door to activism from anywhere. And despair has opened the doors to activism from hospitals, doctor's waiting rooms, whichever state we may be in.
    I wish to give a huge thank you to the people who participated to putting together the #spartacusreport. Also please pass my wishes of prompt recovery to those who are currently not well. I'm sharing the report on the web and emailing my MP.
    Everybody: don't forget to use the #spartacusreport twibbon on your web profiles!

    ReplyDelete
  12. This comment has been removed by the author.

    ReplyDelete
  13. Rofl
    I read and recorded the data for the Spartacus report on my daybed.

    I wrote the first half of my section of the Spartacus report on my daybed.

    I became more and more sick as I wrote it and by that stage became virtually unable to leave my bedroom. My painkillers were now at maximum dose.

    I wrote the third quarter of my section of the Spartacus report from my bed.

    By this stage I was only able to work for a quarter of an hour at a time and then had to sleep for the rest of the hour.

    I wrote the rest of my section of the Spartacus report in bed as and when I could, working through the night as the pain now meant I couldn't sleep anyway. I no longer left my bedroom.

    After sending the report to Sue I spent 5 whole days in bed, only leaving it to drag myself to the loo. I only started to sleep again on day 3 when the pain started to abate.

    When the spartacus campaign was launched I tweeted, emailed and facebooked from my daybed. By early evening (6pm) I had to retire to my bedroom.

    On day 2 I was bedbound and unable to leave my bedroom. I tweeted etc from my bed. Painkillers once again to max.

    Today, still confined to bed.

    ReplyDelete
  14. I have been doing research and contributing either from bed or sofa - if I do use the pc i have to do it in short bursts as my concentration goes and i get brain fog. i also have chronic vertigo, so everytime i move my head, to look at screen or keyboard or read something my head spins and the dizziness gets worse and i feel nauseous. if i move i lose my balance and fall. i also have severe muscle and joint pain and this is worsened by typing and sitting in one position. my exhaustion levels are at an all time high. not tired - deep draining exhaustion. i have just about killed myself doing this, but if they won't do their job we have to do it for them. we are fighting for our lives.

    ReplyDelete
  15. from my cocoon like sofa and bed.....severe pain in hands and wrists, also losing strength in them from just tweeting plus a litlle blogging and facebook posting, pains up arms too and neck locked and extreme pain, brain fog making it hard to take any more in and fatigue means nothing left to do anyhting else ....just hope the tweeting etc helps just a little

    ReplyDelete
  16. Thanks for all you've done! Joined in from sofa in between falling off it with PTSD flashbacks.

    ReplyDelete
  17. Some days the exhaustion and stress and worry involved in doing this has been so bad that i have literally spent the whole day crying. I am shot. Every last ounce of energy I have has been given to this. NOTHING else has been done, and I mean nothing. currently 5 days of washing up in sink, bed not changed for weeks, washing not done, hair not washed, not been able to get dressed etc etc. existing on cereal and the occasional microwave meal. they just don't realise how ill we are or how much this has cost us. i have not been out of the house since christmas day when my sister took me to hers. and before that, the only times i've been out of house for 8 months has been to go to hospital appointments.

    ReplyDelete
  18. I wanted to do much more. From bed I donated £40 to the fund. I read the bill itself and the hansard committee discussions etc. and I wrote to a few Lords/MP's (I wish it had been more). I followed blogs and articles online at The Guardian etc. and tried to post clear explanations of the bill and correct peoples misunderstandings about it.

    It hasn't been a good year for my health, so I have done so much less than I would have like to have done. I greatly admire people like Sue who have managed to fight through their ill health and achieve so much despite it.

    ReplyDelete
  19. As another comfy chair prisoner I emailed and tweeted as much as possible; whilst also taking my voluntary shift on the FMA Uk helpline. The energy levels are spent after lunchtime any day never mind when trying to do what I can for Spartacus; but I carry on as best I can, just like the rest of us. I send sincere best wishes to all of us who helped in the hope that we might make a difference.

    ReplyDelete
  20. I have 2 different medical issues going on.

    I have the mobility impairment I've had all my life. It limits my mobility but doesn't cause fatigue. (I refer to "standing spoons" - there's a limit to how much standing/walking my legs can take, but they're pain tolerance spoons rather than fatigue spoons.)

    Then I have my unrelated fluctuating chronic health crap. On days when I'm fine, I'm really totally fine. I can literally push my wheelchair all day (on March 26th last year I must've pushed a good 15 miles). I do take a lot of drugs that make me sleepy, but with caffeine I can push through that with no ill-effects.

    But then there are the days when I'm not fine. And as I currently have a virus exacerbating my chronic crap, I'm really not fine. I spent half an hour last night blankly staring at the Dominos web page because putting in an order for pizza was frankly too complicated.

    ReplyDelete
  21. I spent Monday in my comfy chair where I spend my out of bed time. Tuesday was half chair, half bed, where I carried on writing and tweeting. Today I've been up half an hour but I'll be back in bed shortly since the last two days have racked up the pain quite a bit. I'm going to write and record a report on the spartacus report from there for the Pod Delusion.

    ReplyDelete
  22. I've been sleeping whenever I could. Have realised I've put on tonnes of stuff already to focus on this action and trying to adjust the balance, but I'm having a hard time even remembering my own name and phone number. I have a feeling I'm going to get lecture of the year (and it's only January) from specialists and GP when they realise I'm still trying to work at painting and so forth while barely shambling along. But exhaustion or starvation isn't a big choice for me, especially when I've got a child who relies on me. If it was just me I imagine I'd probably just collapse now.

    Doing this sort of action is not because our illnesses or disabilities aren't THAT bad...we're doing it in SPITE of. I remember the last actions for TBoB had same results; get into a tizzy getting things done, then everyone was shattered and trying to recover for months. Bendy hasn't been capable of talking above a hoarse whisper since the last speech she gave if I recall.

    This isn't fit for work...it's desperation.

    ReplyDelete
  23. I have complex interactive disabilities eg. chronic seizures, vertigo (believe me severe dizziness does not touch the descrption!), Chronic Anxiety Disorder including Agrophobia & obsessions, Clinical depression.. The list goes on..
    I have relapsed after 8 yrs coping in the depression & anxiety areas which has knocked on.. Just getting crisis support... families & friends v worried...
    Started checking reforms cos so scared for my self... Now i'm scared & full of care for all of us & fear of being punished is just too bad... & This is not about sympathy because our courage at times astounds me...
    Now i've emailed MP for 1st time in life, with report.. I tweeted, shared links etc on Monday from bed & settee.. Got more ill thru day.. still exhausted, off my head, bent double with back,arm, hand pain, numb legs, dissociating etc..
    Very difficult to know where tipping line is & doing best..
    I have to say i'm proud for someone like me, who is very afraid now of government, to email & join twitter is no small thing.. you could say i'm facing my fears but i feel like a rabbit shouting to the hounds & it really is devastating!....
    Will I stop? Can I stop? Where do I draw the line on legitimate bed/sofa activism & being overwhelmed by 'unbelievable' 'reforms' & being ignored by Govt.. very scary or legitimate paranoia?!
    As just 1 tiny example the change to PiP removes supervision for danger & no longer includes night seizure... these seizures are some of most dangerous for me Have led to partial status epilecticus,,, which means serial seizures... i can take weeks to recover & from some i never have properly...
    I started to receive DLA 9 yrs ago depite being entiltled all my life without knowing.. it changed everything for me including my attitude towards myself & to telling others of my sickness & diabilities & i use towards a low rent & transport etc.. Back into the abyss i'm on the edge of again, without it! Importantly I want to say thankyou to all my country people who have contributed to my DLA support for 9yrs.. I have never taken it for granted & I do not believe all our country wants this to go ahead... they just do not know about properly!
    I support the Spartacus Report & a pause to the imminent abolishing of DLA in light of this very diturbing research which has overwhelming support..
    Best wishes to all... Nita

    ReplyDelete
  24. "I spent half an hour last night blankly staring at the Dominos web page because putting in an order for pizza was frankly too complicated."

    I empathise. Last week I spent 4 hours watching just one episode of "Law and order" which is 1 hour long with adverts.

    I kept falling asleep or having to go back because I didn't know what was going on. Maybe I should have given up but by that stage I was determined I was going to find out who did it if it killed me!!!

    ReplyDelete
  25. I did my tweeting and campaigning on facebook on Monday from my bed. I currently sleep around 18 hours out of every 24 and if I sit up downstairs for too long I get lots of pain so I've been doing what I can from my bed on the laptop. The stress of the situation and trying to get others to listen and to care about it has really got me down and stressed, non-disabled people have no clue what it is like having to fight for every little thing and trying to make them listen and be aware of what is going on is so frustrating as they don't care about what doesn't affect them! Currently still plodding along as I have had counselling today and have a meeting tomorrow but I think Friday I will have to take some down time and stay in bed before I wind myself into the ground!

    ReplyDelete
  26. I pushed myself to the absolute limits and each time I did, I had to go to bed or be threatened with hospital.

    I did the first two weeks of #spartacusreport from bed, barely able to get myself a drink.

    Then, when I realised what I'd taken on, I gave my life to it. I worked from 6am til midnight, I didn't wash any clothes or play with my children for 6 weeks, I didn't cook, I didn't appeal my DLA decision, I didn't sort my housing benefit out, I didn't go out, I didn't do anything but work on #sartacusreport.

    Immense thank yous to my Mum, Husband and children for making it even vaguely possible.

    I had three chest infection, a crohn's flare a fractured rib, two atrial fibrillations and I didn't even tell anyone about the last thing cos I knew they'd make me stop.

    I suppose I spent 3 weeks out of the 6 in bed doing this and to make it clear, I WASN'T FIT FOR WORK, I WAS PREPARED TO BE UNFIT AND WORK. THAT IS THE DIFFERENCE MR DUNCAN-SMITH

    ReplyDelete
  27. Forgot to mention the chest infection and a lupus flare I developed over the two initial intensive weeks working on writing up the bones of the report.

    So over the course of the report we have a toll of Sue with flare and fibrillations, Kalyia very obviously ill, 2 spartacus helpers in hospital, and myself with flare and chest infection.

    Quite apart from the increased pain, the exhaustion and having to work from bed, something many of us are used to doing, often without complaint and even forgetting that it isn't "normal", how many of us actually became ill as a result?

    And by "us" I don't just mean people directly involved in the report, but all of you who have helped make this happen.

    ReplyDelete
  28. Yes I am campaigning from my bed - Im here permanently as my back cant handle sitting for long periods. Also I have a frozen shoulder on the right which makes it difficult typing and my shoulder gets to a point where even just retweeting becomes impossible. Yesterday I was retweeting only as couldnt cut n paste as my arm couldnt move enough to do it. When shoulder not as bad I can type but if I do this too much then my third fingers on both hands keep dislocating. This morning couldnt do anything as had a migraine (I get quite a lot of them unfortunately)

    Hugs n love to all spartaci

    Barbsisi xxxx

    ReplyDelete
  29. Oh and my 89 year old Dad with Parkinson's got pneumonia and nearly died over New Year and I STILL carried on - my Mum and Dad simply wouldn't let me drop everything and visit every day because they knew how vital our cause was to so many.

    ReplyDelete
  30. There are in fact several comments on this thread from people who worked as part of the core team. Not just the obvious ones.

    We must never forget the HUGE debts we owe to the Secret Spartaci

    ReplyDelete
  31. I have done what I can to post comments raise awareness etc The cost has been I do not bath and stink sometimes. Do not get dressed. My hair looks like you could drill for oil. I haven't returned personal emails or phonecalls that are important. My pain has gone through the roof. For 2 days I avoided going to bed in the PM which is where I end up normally, to contine trying to get news to cover spartacus and comment in papers, until I cold barely see, think straight. Went without proper food even tho have hypos. Haven't slept properly, in months,eyes look like I've been punched. On verge of total collapse now so now I AM going to have to go to bed. I have a med. appt to keep in a week and don't know if will recover in time to keep it.Or if I will be able to stop myself fighting this nightmare, knowing what the costwill be to my health and sanity.

    PS Please sign letter to Ed Milliband if a victim of ATOS in any way. Stop Labour trying to outnasty the nasty party to look tough.

    http://victimsofatoscorruption.wordpress.com/2012/01/08/letter-to-mr-miliband-please-sign/#comment-2777

    Thank you all and goodnight!

    ReplyDelete
  32. I have a spoon deficit the size of Greece's financial one. Everything is getting slower and slower and harder and harder to do. Five days washing up for me too, and that has mainly been crackers and biscuits and ketchup butties... Going to take a sleeping tablet tonight to calm the adrenalin and subdue the nightmares.
    Solidarity to all.

    ReplyDelete
  33. I have various mental illnesses. Fibromite to boot. Gave a phone interview. Tweeted, retweeted. On Facebook raised awareness. Signed petitions Not much in comparison to some. Been ill with frequent flare ups, and been suicidal. Living fear of going outside. I wish all of those who are very ill a speedy recovery. A huge thank you to everyone involved and for all the hard work put into this. You are amazing. I wish I could have done more. X

    ReplyDelete
  34. PPS before drugs and sleep - just had email from MPs sec - he is "away" but will make sure he reads my email and spartacus report on return - in a week.

    ReplyDelete
  35. Have been tweeting and sharing on Facebook and Google+ from bed. I'm only partially bedridden, partially housebound: can sometimes go Out for an hour or two for errands or appointments, but had a crash over last few days so did bed activism to support Spartacus from California. Solidarity!

    ReplyDelete
  36. Regarding the "secret Sparcarti", only Sue and Kalyia as coordinators of the project know the true extent of the people who came together to make this work.

    However, following a comment made to me on twitter I think it only appropriate to mention the thousands of disabled people who made the huge effort to answer the original consultation itself.

    It is their responses which were ignored by the government but which form the basis of the Spartacus report. For me one of the aims of the report was to ensure that their efforts were not in vain.

    Every single person who participated in that consultation and whose view was ignored is a "secret sparcatus".

    ReplyDelete
  37. I have secondry ms and often bed bound, my hubby sleeps a lot due to he's ill health too. Constantly fighting to get social and welfare help. We are I 40's and50's I've worked social services 10 yrs, education 10 yrs and a very short spell as volunteer for NHS. I ve seen problems for all these years and years.......things need to change for the better not go worse. I'm new to twitter and don't understand it yet but will learn. I have been making comments where I can so far, sometimes from my bed. At moment I suppose I'm a secret Spartacus but will be happy to help at some point and contact you as I have an abbundence of professional and now personal experience and running two illnesses together for the past 5 years heavily. My greatest tanks to all as have been frustrated with all of this.

    ReplyDelete
  38. I spent a hour or so from my sofa/bed on Sunday emailing all Lib Dem Lords about ESA time limit. Then on Monday I emailed my MP about SpartacusReport, wrote a blog, posted on Facebook and tweeted for a few hours. Feel quite dead now. Lying on my sofa/bed again listening to the debate in the Lords and hoping against all hope that the wonderfully articulate Lords who understand about Welfare Reform will win the day.

    ReplyDelete
  39. I am mostly bed bound I made a specail effort to sit up at PC on monday so I could read report and tweet and make comments where I could. Sometimes sitting up for few hours is enough work for the week, its out equalivant of working full time.

    ReplyDelete
  40. It's humbling to read these comments - so much struggle, so much injustice. Tried to help - from sofa all propped up, brain fried by trying to read/take in/act upon so much information, flu-like neuro-immune exhaustion and insomnia much much worse, blood pressure far too high not good news as mum died of stroke younger than I am and she had same condition. Emailed Spartacus to my toadyToryyes-man MP, for his info, wrote to all LibDem Lords re ESA, but only able to 'cos computer savvy and reasonably well life-saver of a partner (also Dave, Sue!) did the donkey work.
    Thanks thanks to all Spartaci, now I collapse.

    ReplyDelete
  41. FibromitesUnite11 January 2012 17:55

    I have Fibromyalgia, arthritis in my hands & feet, carpal tunnel syndrome and currently have two cracked ribs due to coughing too much/hard when I had a cold!

    My fibro has been flaring & lately I've been sleeping more than I'm awake (although even awake I'm still sleepy). I seem to spend most of my time on my recliner sofa as it's the only way I seem to be comfortable and it's been from there that I have been tweeting & emailing as and when able to. I've been trying to get the Spartacus Report out there to MPs, Peers and the Media in the hope that it'll make a difference.

    ReplyDelete
  42. I can't sit upright and think at the same time, so er... yes. Lol!

    ReplyDelete
  43. I am fit for work. Well, if enough things get put into place to support me and I work very part time, but still. I'm only starting to realise how much of a toll this campaign has had on me. Several times marathon emailling or live tweeting sessions have left me unable to walk or talk, in a vomiting heap on the floor. I'm currently trying to get hold of voice recognition software because typing has gone from just-about-doable to excruciatingly painful. And I'd be able to type while properly lying down which seems like bliss right about now.

    I know that my small sacrifices are nothing compared to some of you - so thank you from the bottom of my heart.

    ReplyDelete
  44. temporally loopy11 January 2012 19:40

    Like you, I do most of my internet(ting) in bed / an armchair, with HWBs, heatpads, painkillers and a nebulizer to keep me company. Sometimes I can concentrate for a long time, sometimes only for ten mins or so and cannot string more than 10 words together so just look at other people's postings.

    I only came in on the tail-end of the spartacus report and am in absolute admiration of those who have been involved. I did the MP emailing and a little twittering and passing to friends but as "flo(disabledmedic)" has said ..."thank you from the bottom of my heart".

    I wish the newspaper "have your sayers" who make the "oh well if you can sit at a PC and post online, you could work in an office" would read some of the above and realise just how unfeasible that really would be and how much suffering some go through just to have some sort of normality and communication with the outside world.

    On the other hand, we would probably told we get paid too much money if we can afford laptops and/or wi-fi etc. etc.

    ReplyDelete
  45. Govt suffer third defeat in Lords on welfare reform bill!


    http://www.guardian.co.uk/society/2012/jan/11/disability-welfare

    'It's a hatrick! For 222, against 166. This is astonishing. It is an incredible victory for campaigners, a real kick in the teeth for the government and a personal humiliation for Lord Freud
    7.25pm: There's a real buzz in the chamber tonight. The government has suffered two defeats already, and a third, on exemption for cancer patients from the 12 month limit looks distinctly in the offing. Twitter already on fire with the news.

    Here's Sunny Hundal the Liberal Conspiracy blogger:


    GOVERNMENT DEFEATED in limiting time-limiting ESA for disabled people! OMG! Lord Patel FTW!'



    Good news, the Welfare Reform Bill is slowly being eviscerated by a group of unelected largely older people in the Second House, there is a long way to go yet, and the bulk of this brutal piece of work remains, but if more wider opposition to the bill was generated, unions, charities, lefts, etc, (disabled people are doing enough, they cant do more) then it would be even more filleted.

    ReplyDelete
  46. I can't thank all you activists enough. My only contribution was a few quid, but I'm soooo proud of what you've all achieved.

    ReplyDelete
  47. Have tweeted and e-mailed MP -not much compared to others, but all I could do for now. Just heard Lords vote! Well done and thank you from the bottom of our hearts.

    I wish people knew the toll this has taken on so many - and just how impossible work would be for some of us. The work capability assessment does not do justice and is not a fair way to find out who can and who can't work

    ReplyDelete
  48. Old people rock! (Err but I am one so a tad biased!)

    ReplyDelete
  49. I did it from my bed! I tweeted, shared on Facebook and I wrote to my MP. Today I received a reply. It is as one would expect a regurgitation of the information Maria Miller has been spouting. I am willing to share the letter, but am unsure if its entirely legal to reproduce it as a public document. However I have put it on Facebook, if it turns out that I can't do that then I will remove it.

    I really want to thank you all for making this possible, it really does help when there is someone at the helm steering us in the right direction.

    incidentally I have a solo exhibition this year, the title of which might be View from a Bed as so many of my images are taken in bed!

    Vanessa

    ReplyDelete
  50. Sue and Kaliya for Women of the year!

    ReplyDelete
  51. Catherine Street11 January 2012 20:02

    I feel I need to do more from my sofa/power chair because my pain is periodical.
    I'm a disabled mum/wife. I have Spina Bifida from level T10 and last year had both legs amputated due to chronic long term pressure sores on both feet. I can't sit for long periods and I totally rely on my Hubby and children to help me live.
    I recently finished an 18 month contract working frontline for the DWP in a JCP nit far from home.
    I became the person every vulnerable customer was passed onto though I wasn't the offices DEA (she was never in!!). My own knowledge of local support groups and what my customers were genuinely entitled too never went down well with my manager. Very rarely did I meet my off flow targets, as I was too busy telling customers what they should be claiming. My contract wasn't renewed due to Cameron's cutting of civil service jobs.
    I've now decided to devote my time and efforts into helping people. I'm nearing the end of my first year law degree and after recently joining twitter, have become so passionate about the fight we face. I hope I can do more. Keep in touch. catherinestreet@talk21.com
    catstreet21 (twitter)

    ReplyDelete
  52. I wore myself so down via bed and jammies, on spoon deficit, that I managed to put my life in jeopardy mid-December. Was in hospital for four weeks, fighting for my life against a nasty CMV viral infection which, as I am immuno-suppressed, nearly got me.

    Came home on 4 January, spoonless and wobbly beyond belief, and immediately threw myself back into the last minutes of preparing for tonight. Tomorrow I get checked for a relapse, cos I'm all wobbly and ill again, but it was worth it!

    I'm a former UK resident, gone home to Germany due to benefit problems, and by all that's holy, we did it tonight and we'll do it again!

    ReplyDelete
  53. I read the wrb last year and knew there was a lot of facts that had been manipulated. I answered a survey that was emailed to me (i don't remember from where). It's only from twitter that I have been made aware of the work and sacrifices made by people like me, who live mostly on a bed made up on a sofa, and the toll it has had on their health. I have got progressively worse over the years but on the weeks I can manage I volunteer a few hrs at a special school, am in touch with ex pupils and my partner works at a FE college. ESA makes it possible for those who can to work. Mostly just a few hours a week. Note how I say those that can work as I would say they all dream that they can have a job. I dream of working. I have always done 'permitted' and voluntary work. It is clear that the government believe that if u can do a little u can work full time. Not true. My cousin has Autism and is desperate to work. It took 9 years to find him a job he could do and then he was laid off as library funding was cut. Sadly it may take another 9 years but he is still deemed able to work. There are 1000s of people like this and I am so grateful to the Spartacus people for being a voice. I wish I knew how to start to help, it,has taken long enough to write this as I am tired from going to the hospital but when i have recovered I will look and see what I can do as thete are more bits of wrb that i am sure will need to b opposed. Thankyou again. You r all amazing people

    ReplyDelete
  54. Got very ill by day 2, but still managed a second days activism from bed!

    ReplyDelete
  55. Well done to everyone who contributed to this. I completed the original DLA consultation, publicised Spartacus as best I could, and emailed crossbench and lib dem peers re the 12 month ESA time limit.
    Time to re-charge the batteries before the DLA votes next week.

    ReplyDelete
  56. Please email me on simon@simonstevens.com because as a real disabled person I want to confront this self appointed god who stolen the voice and souls of real disabled people to handed them to charities to abuse us without shame and live like shit on benefits without hope because SHE can not handled being sick and demands the world pitys her and throws guilt ridden money at her because she thinks its her right to be a 2nd class citizens and force every other disabled people to live as miserably as SHe does!

    ReplyDelete
    Replies
    1. Simon, I can only assume that whatever chronic illness or disability you suffer from is affecting you more than usually severely, because I think your judgement at present is severely impaired. I say this seriously, not to be unkind. Please, if you are able to, read back over Sue's posts, and peoples' comments, and you will surely see that your comment is unfair and highly mistaken.

      Delete
    2. Simon, I'm a "real" disabled person. I rely on the benefits system to keep me alive. I didn't choose to become disabled and I worked for many years, so I've seen disability from both sides of the work fence. Those that are able to work need to have access to whatever help they need to get it and those that can't need help to survive without it. No, more than survive, live.

      Delete
  57. Simon I think you're missing something here. This whole campaign has been to ensure that people are not forced to rely on charities but get the state support they need.

    There are people on DLA who are in full time work who would be equally as adversely affected by these cuts as those not able to work at all.

    Part of this campaign has also highlighted the difficulty some sick and / or disabled people have in getting work, due to our current set up of employment not really allowing for it.

    This campaign has never been about defining sick and / or disabled people as second class citizens, it has simply recognised that some forms of sickness and / or disability can put a great financial strain on the household and asks the state to continue to remember this and assist appropriately.

    ReplyDelete
  58. Simon, may I politely request that you do not take the personal inadequacies of your £400-a-day "disability consultancy" out on Sue, who is anything but a "self-appointed God". Accusing her of capitalising on the misfortune of the disabled is not merely wrong, but apparently rather hypocritical.

    Do her the courtesy of reading before you flame and you might understand why upwards of 300 disabled people have voluntarily donated upwards of £3,500 to subsidise this research, and why it is so necessary. I only wish that I'd had the drive and the impetus to coordinate such a thing, throwing £20 at it feels hopelessly inadequate.

    Oh, and Simon, if you are going to flame others whilst superciliously categorising yourself as "a real disabled person" (I'm pleased for you that your condition is more visible than Sue's or mine, but don't take it out on the rest of us), you might not want to publish a public profile including your address, telephone numbers and personal information. I'll keep my comments public, but not all of the Internet is so civil...

    ReplyDelete
  59. I vote Stevens as the new press advisor if I haven't got the job.

    ReplyDelete
  60. I am working from my bad and have been in my bed since friday last week. I am so tired I can't think and today I have a fever. I tried hard to help with the spartacus report as much as I could. I just hope sending emails to my MPs and other relevent local people as well as tweeting as much as I could about it helped.

    ReplyDelete
  61. Thank you all!

    I had intended to lend support to the writing but an offer of paid part time work I could do from bed tempted me away.

    You did what I didn't have the courage to do, using energy you simply didn't have. You have paid a high price for it and will continue to do so for a long time in many cases I know.

    Thank you #frombedactivists I applaude you one and all - truly you are Sparticus!

    ReplyDelete
  62. I went to my trib hearing alone as my local trust didnt have budget to send a rep with me. I sat infront of 3 men who were on a platform, so already looking down on me,!
    Despite supporting evidence going back 20yrs inc, depression, self harm, overdoses, suicide attempts and character statements from close friends etc...their report stated 'whilst we recognise miss xx has various mental healfh issues, she does not qualify for esa and is therefore fit to work'
    Some days I cant get out of bed and or sit staring at the carpet.
    Im now on jsa going thru the motions whilst I wait for the result of the appeal against the upper tribunal.
    Its hard enuff fighting to stay alive let alone fighting against the controllers.
    Oh btw,i scored zero in my medical assessment!
    Living with a silent killer is the worst thing ever..And my wil is getting weaker.
    Good luck fellow sufferers. I wish theyd put more into us than fancy firework displays!!!!

    ReplyDelete
  63. i'm now in bed. minor tummy bug during a cfs relapse plus 3days sat typing have had their toll. I'm seriously wondering if i'm ever going to be able to hold down a job when this happens every 6 months with such variable consequences. I used to think "it's ok, i'll go back on IB" and somehow that helped me get by. I don't see ESA as an option - I can work but can't get the kind of job I can do because I can't get funding to retrain. It's all wrong. Currently googling trying to find the deal on a long term wheelchair rental which with rip me off the least because it's the only way i'm going to get the powerchair which I need.

    ReplyDelete
  64. Good article, thanks for sharing, cheap moncler is highly recommended.

    ReplyDelete
  65. I've been struggling to keep the campaigning going - when I run out of spoons I run out of brain too. Working from my usual sofa-bed prone position, laptop on it's clever adjustable table so I can read and type from a prone position. If my brain will function. Sorry that I wasn't able to do much for the last couple of days. Bit brainier today, so back to the fray! Emailing Lords, next stop.

    (((hugs))) to all spoonies.

    ReplyDelete
  66. ooh, now it turns out that I have two infections. Back at work now so not having fun with trying to get rid of them.

    Of course the Spartacus report didn't make that happen - but normal life is too much for me. Visiting family over Christmas; work; trying to find a new place to live; plus some fevered #Spartacusreport emailing, commenting and Twitter-watching.

    It's the fact that I'm not at all unusual that bugs me. A close colleague managed to get pneumonia recently from working too hard with a difficult health background. Another who had spent months off work with post viral fatigue overdid it again and spent Christmas with flu. I am trying to go part time but my manager has insisted I stay full time for another three months. I can't say no or I'll have to admit I can't cope and leave altogether.

    There are so many people who are just a few combined pressures away from becoming too sick to work for a long time. It amazes me that most of them don't realise what's happening to the limited support that was there until now.

    ReplyDelete
  67. I'm not in bed, but I'm struggling. I have bipolar disorder and as I see it, I have everything to lose from these reforms. I could afford to lose some of my benefits, but not the whole lot.

    I emailed my MP at the designated time and I asked people I knew to help, but every time I look at more information about this, I freeze emotionally.

    I'm hoping I can find enough spoons to do something over the weekend.

    ReplyDelete
  68. i have sma and am effectively quadraplegic. i did what i could until gravity won, my breathing less powerful for speech dictation software to work, and unable to scroll to read twitter. i thank everyone who helped, and sue - i am humbled. oh, answering the q, i am in bed for much of the day, but when up, i am still using an electric wheelchair, and am pretty useless, physically that is!

    ReplyDelete
  69. I have relapse remitting MS, although it's not done much remitting since diagnosis. I spent Tuesday tweeting, retweeting, facebooking, emailing MP, Lords, and I forget what else. But a lot of stressing over the future of thousands of disabled people was involved. By the end of Tuesday I was dizzy and sick and so very tired, by Wednesday I was even worse, the discovered a numb patch across my torso. By Thursday I could only walk a few steps with a stick, and the GP confirmed the reoccurance of acute nystagmus and thus was able to confirm I was having a relapse. I was originally due to return to my job on Monday, but instead I am on a high dose of steroids for the next 5days, with the joys of being totally bed ridden to come as I face the withdrawal symptoms, to then hopefully come out of it better than I was before I started the steroids and just sit tight and wait over the next 6months to see what, if any, of these symptoms will get better and just hope that none of them are permanent but in the full knowledge that given my history of never fully recovery from a relapse before, I could be facing now I life with any of the symptoms described above as a permanent feature. Was this triggered by Tuesday and WRB and facing up to the worries of my own personal future and realising I really just won't be able to live? Not even the most eminent neurologist in the world could confirm that, but it seems a bit of a coincidence.

    ReplyDelete
  70. I wrote to my MP while I was waiting for hospital transport to take me to the anti-coagulant clinic, where I sat in the hospital wheelchair for 2 & a half hours and by the time I saw the nurse couldn't remember what it was I wanted to ask about my treatment, which I am not totally sure was the right course for carbon monoxide poisoning...I was exhausted when I got home but relieved that I no longer had to self inject daily or go to clinic again that week, which only left rheumatology on Fridaymorning. I attempted to record a video saying I'm Spartacus to upload. My memory card finished and it was cut off but I added what I had written to the MP & tried to explain things I had failed to in my exhaustion in the often left unread description. If I had not been so exhausted I would have maybe joined up with twitter but I don't think I can deal with that as well as facebook...I do what I can and am grateful to those who have sacrificed so much...

    Sue honey write them a letter telling them why you haven't yet appealed..please...they took my after appeal date letter from the hospital as an appeal when I angrily told them how wrong the assessment was...hugs xxx

    ReplyDelete
  71. You may wish to read this,

    http://simonstevensviewpoint.blogspot.com/2012/01/my-response-to-spartacus-report.html

    ReplyDelete
  72. yea i have read that Steven so your a fit disabled consultant with a good education who thinks sue is wrong ?

    Well i think your well off the mark and i and my family go back to the early twenties from the bank of England

    My view about your article is this and do correct me if I'm wrong ?

    What your saying in a nutshell is I'm disabled and successful ? i don't wont sue speaking on behalf of me ?

    I myself have known many fit disabled people such as yourself over the years sue is in general not talking about these people she has got to the heart of the matter and is supporting all long term sick and those disabled people who have no voice that has been her aim from day one

    She has done well and there is still a long way to go there have been many people over the past 2 years who have taken their life because they have not been able to adjust to their loss of benefit and the stress of being labelled a cheat set of circumstances and that is very tragic but true and i for one wont to see justice for those families concerned

    Your report and take on welfare reform is very far removed on what goes on behind the closed doors at the DWP /ATOS

    Hopefully sue will give her account of your blog posting but to me your on another level and you make no sense at all and you come across in a way that disabled people are all like yourself fit and well

    i have news for you they don't there range of disabilities like those long term sick is very wide far wider then the likes of you will ever understand

    ReplyDelete