The "We're Fine" Update
And from the whole of the Broken of Britain team I can say we are. Fine I mean. Ok so one of us has just got out of hospital from yet another infection, one of us has a 'wonky' heart, one of us has just moved and is suffering the increased health consequences, one of us has been diagnosed with dehydration, malnutrition and exhaustion, and another has a chest infection. But we're spoonies so we're all fine.
To us 'fine' can mean not knowing what day it is, what our own names are or where we are. It means the people who love us standing over us with fear and worry etched on their faces, begging us to slow down, to see a doctor. It means those who care saying with broken resignation in their voices " but it shouldn't be like this, this is Britain". It means sitting back and watching us deteriorate until we have no strength left to argue otherwise, overruling and sending for the doctor. But still we'll tell you that we're fine if you ask.We'll probably even claim we're fit for work when we're like this, to us it's just a natural consequence of the risks we all knew we were taking with our health by campaigning but felt we have no other option but to continue anyway.
To help you understand our 'fine' it might help to explain that not all of the 5 of us will live to see the end of this fight. Our conditions vary, but we are united in our shared understanding that this battle is bigger than each of us, more important than our individual lives, that it is literally a war we will wage with our dying breaths to protect those who we know will come after us, those we wish a better future for.
But it is a war with huge, terrible costs associated. Not bullets and bombs but no less lethal all the same. We step back and regroup because we have no choice, our bodies are weakened by the ferocity of attack against us. When ordered to rest we fret and worry about those with no-one to care for them, to fight for them and through our delirium insist on trying before falling back in a grudging, tactical retreat.
The energy to fight will always be found - it's taken 3 days to write this much. To try to explain to you that this is the reality of 'fit for work'; that no matter what we do, what efforts we go to, we fight this because it is wrong. It is wrong to traumatise sick, disabled and dying people already living difficult enough lives for being unable to manage their bodies or minds well enough to sustain work.
But please don't believe that we are 'fit for work' or even that it's true when we insist to you
"we're fine"
14 comments:
So true and why I am often at a loss to say to peeps like yourselves how are you because I know you are never fully okay but just having a better day than average or the day from hell. Angela
I tried to comment but my brain is actually completely blank. Fine indeed.
No words can express how truly grateful I am to you all for fighting our corner, under very very difficult and at times I know, unbearable circumstances.
Thank you from the bottom of my heart.
jollylips
What jollylips said. Thank you all.
I also second what JollyLips says. AND YEah fine lol I know exactly what you mean cause yeah, I'm fine too. When people ask me how I am I have started saying 'yeah' and nothing else, people don't know how to take that answer and drop the question.
So many people believe you are fine when we say so but they rate fine as being their type of fine, being able bodied fine, being healthy and well fine, having energy fine and being alert with a quick keen brain fine. Our fine is just a word, we say fine as an auto response. We use fine when we are coping, just coping, not coping, feel like death, feel like curling up and dying, when exhausted, when in agony, when up against everything, when we try to do what we are unable to do. We are always fine.
When someone asks how I am and I say fine, then who asked says 'good', they then carry on in their world.
If I say fine and my family are with me they jump in and say 'No she isn't fine, she's very poorly, she is only saying fine but don't believe her', lol sometimes I appreciate this other times I think but I don't want anyone to know I'm struggling.
Sending you strength and well wishes with grateful thanks for fighting on behalf of society as a whole.
Chris
What you guys are doing is phenomenal. I and mine appreciate it more than words can really say but still worry for you overdoing the overdoing. We're fine too. Perhaps we should revive the old, traditional greeting of "How d'you do?" to which the only acceptable reply is "How d'you do?" before moving swiftly on to the weather or other neutral subjects... Mind you, we'd have to get it together to start the greetings process ;)
Very gentle hugs to you all,
xJ
Since the day of the disability march, when i joined in the virtual protest & twitter to do my part, I have been so ill & tired.. partly from staying on the computer which is my own fault.. I'm afraid they will deny me benefit just because i've tweeted but i won't stop... it's miles past what will happen to us now.. we must fight for all in the future & leave evidence of the affects on us including how we may give up when without attacks some of us would have recovered.. and MILLIBAND who i so need to trust has visited ATOS & said he likes their work!!! I wish he'd said which aspect..not even sure he knows they ALSO do disability denials!
Thanks to you all BoB.. be careful because we are hurting ourselves...
Good luck Bendy. Also all those who are suffering and feeling hopeless. I believe there is huge support in the wider community for the disabled. Do stay strong and have faith that those who need help will never be left to fend for themselves. Never.
DOC
I'm so glad you're... erm... bearing up. I've been a bit worried about everyone who's been a bit quiet. I know what it's like when you're so knackered that you've only nearly finished the "no, don't worry, I'm not dead" message when you receive yet another concerned enquiry and have to start again. So I haven't asked :D.
Love to you, Bendy, to everyone else at BoB and WtB, and to all readers. Lots of love xxx
I read this and my heart bleeds. I listen to the brave people in the group I run, a group for 'heartsink' patients where I work, where my group is the only place they get heard and not told. It makes me so angry what you are all putting up with.
All I can do is listen and support and help fill out forms and write letters and it's not enough.
Your words rang so true - you explained it far better than I could ever do. I am tired of fighting - explaining - feeling so ill with new conditions adding in to the old. Often I just don't want to speak to people. Sometimes they ask how we are (our son and myself) but it is a greeting; not a true inquiry. Detailed information makes people squirm - and they often respond with " you look well"!
Do we all want to scream - yes! - but it's just too damn tiring.
“It’s a sunny day/Sunday/Birthday/(name important day)” – “why don’t you come for a walk/drive/(name activity)…it will make you feel so much better…you should “get out more” “socialize more” “smile/laugh more” “you wasting your life in bed/sitting there/doing nothing” Mary/John/even S Hawking has (name affliction(s)) and goes out/climbs mountains/works /(name the activity)” “you can type on a computer…use the Internet…why not work?” “We all living longer…” yes, I’m fine too!
I'm sorry this fight is so hard.
Is there anything I can do to support TBoB, financially or practically?
I'm with you on this. Get it all the time. "How are you?" He's ok, someone else will answer. S'cuse me? "But He CAN walk, and it's not far to...", "Why doesn't he..." Hello? Down here?, "If He can use a computer, surely he can.." Sheesh,variations on a theme, over and over.
Cheers for the work, Bendy. Appreciated.
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