to think this is too high a price?

[CFSKate]

Last week there were a lot of posts here protesting at the changes to disability benefits.

Please spare a thought for the high price disabled campaigners are paying for simply trying to fight for survival.

The lead campaigner, Sue Marsh, is now in a hospital bed.

This is the price we have to pay.

"work has put me in a hospital bed chained with plastic tubes.....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'm not the only one. We have at least two others 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........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......"

from benefitscroungingscum.blogspot.com/2012/01/so-how-am-i-by-sue-marsh.html

Do nothing and see vital benefits and services hacked away. Try to fight back, and end up severely ill, and quite possibly you won't ever recover to your previous condition.

What would you choose?

I'm genuinely in awe of campaigners like Sue Marsh.

I would like to think that I would carry on fighting as long as that but really? I don't think I'd be brave enough. What an inspiration.

We all need a system that supports people with disabilities properly, to live as free and as dignified a life as they can.

How has fighting some legislation made her so sick though?

Because when you have a chronic illness or disability, getting through the day takes all your energy and all your strength. Think back to the last time you had a really chronic toothache/backache/migraine and remember how exhausting being in constant, unrelenting pain is. How it saps you of your energy, your cheerfulness, your ability to cope with anything except getting to your next set of painkillers and getting through the day.

Then multiply that several times and imagine facing that every day, when you wake up, if indeed you've had much sleep, knowing that, more or less, this is how things are and ever will be. Now imagine that someone is threatening to take away what little bit of security you have, and that you have to find it within yourself to fight for your survival. The toll that your illness or disability takes on your body on a daily basis means that you are already functioning beyond what your body can really take, borrowing from future years to have some quality of life now. You are already running at 'full capacity' as it were. Add in anything else, any extra physical, mental and emotional strain, and it will quickly tell on your body's ability to cope. Things start to seize up, your immune system begins to break down...

That's how fighting legislation has made these brave people so sick!

Hi Olympia2012, because fighting legislation is effectively work, but they are too sick to work. The effort has made their conditions worse, much worse.

If you read the whole blog you'll see she refers to the "spoon bank" - this is referring to the spoon theory www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ originally written to explain what is it like to have Lupus, but it works for many other conditions too.

I just want people reading this thread to know that just because you don't hear Sue Marsh and the other disabled people still campaigning, doesn't mean the issue has gone away, it's because they are now too weak to speak out.

Thanks OP for posting this.

Olympia 2012, I can easily concur with what PPs have said about how physically draining it is to have a disability. My Dad is disabled through chronic illness, he's in his seventies and volunteers one afternoon a week at a hospice but has to spend the following day in bed because he is exhausted by it. Why does he do it? Because the hospice has helped him, because he wants to help other people in a similar situation, because it gives him a purpose. What might seem a minor task to someone able-bodied can be like climbing Everest with a rock on your back if you're disabled.

what a thought provoking post sexbomb. I had never really thought what living with a longterm disability or chronic illness must be like. Shame on me I suppose.

Sex bomb an excellent post and I agree the spoon theory is also so true.
I have a chronic illness I have lived with for 15 years, I'm lucky my employer provides excellent medical support so I can still work at the moment but that will not always be so, I am not yet 40. So what happens when I am no longer well enough to work to support my family? My DH will not be able to earn enough to support us as his earning capacity is lower hence why I sacrifice any life out of work to continue earning as long as I can.