Monday 30 April 2012

Misery and Miracles

I made it!! for those of you who don't follow me on twitter, it's taken me all day to negotiate the endless journey to out-patients so that I can blog on one of the public access computers.

I'm afraid I've rather taken a turn for the worse. It seems I was in denial and in fact, my crohn's has been playing up all along. Perhaps I got so used to saying "fine" when anyone asked, so used to not eating when it might cause embarrassing symptoms or unbearable pain that I didn't notice the Sickie-Jinx sneaking up on me again.

Well, he has now. I'm sitting here, in mis-matched pyjamas, in a public lobby with hair like a slightly radical brillo pad. I've got a feeding tube in my nose, and tomorrow I will be hooked up to a pain pump until I wait for surgery.

Yep, surgery. Because my obnoxious bowel has decided to get all blocked up again. This is what made the journey from bed to PC so arduous. I couldn't even sit up until about 2.30 this afternoon and I had to negotiate the endless coridors in small chunks. So why today? Why did I have to write today?

Yesterday morning, my world decided to implode. Or rather, the few remaining bits that worked.

I'd woken up that morning to find that the liquid feed, that should have been drip-dripping into me all night, had in fact, been drip dripping on the floor, forming a sticky, sugary, gloopy puddle around my laptop. The poor thing didn't stand a chance. It was death by drowning.

I do everything on my laptop in hospital - watch tv, DVDs, blog, Skype, tweet and listen to music. Faced with an endless hospital stay without it and no money to replace it, I was desolate. At almost the same moment, Dave rang. He had been on the way to visit me to snatch a few precious hours with my boys before they had to go home again. The car had broken down on the M11, spewing oil everywhere in what sounded like a fairly terminal tantrum.

With no money at all for repair bills, I faced the rest of my stay with no visitors at all. I wouldn't see my babies for weeks - it was unimaginable.

In misery, I splurged my disasters all over twitter, then set to making calls and searching websites to help Dave get the car sorted out.

They got here in the end, in time to spend a few hours with me.

When I checked twitter a bit later, the amazing @fionajnicholson and some other friends had set up a fund to buy me a new laptop and help with the petrol and repair costs to the car!!! By the time I found out about it there was over £500 in the account and this morning it had reached a thousand!!!

I'm amazed and humbled that so many people wanted to help me. Dave and I were in desperate straits, already borrowing money from family to afford the visists to Cambridge and unsure how on earth we were going to manage.

Last night, for the first time, I went to bed without worrying and this morning, my first thought was relief. That's worth all the money in the world. More than that though, it reminded me how amazing people can be, how kind and generous. In a world where everyone and everything seems corrupt and rotten, it was a beautiful thing

This won't be the most eloquent post I've ever written, my hands are shaky and I think my blood is about 80% opiates, but even if the rest makes no sense at all, I just wanted to say "Thank You" from the bottom of my heart.


  1. You deserve every penny! You made yourself sick working for others so they've just repaid a debt!Xx

  2. I heard about your laptop Sue and knew it would be a big problem so glad its been sorted so quickly! You and Kaliya have been an inspiration to lots of people like us, and with my son suffering with a gastro problem and hyper mobile joints I appreciate even more what you go through! just wish I had been able to help take care and hope everything goes well, you have a lot of people wishing you better!

    Cheryl & Ben xxx

  3. Nobody deserves it more Sue !!! You're an inspiration to us all. Sending you lots of healing energy, love and hugs, Elindal xxx

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  5. Sue we look after our own. It's a pleasure to help you. I just wish I could do more!

  6. To know that you had a better sleep and feel relief makes the little effort that it took to making the donation well and truly worth it. It's a small way for us to say thank you for all that you have done for us. xxx

  7. Thank You so much for sharing and making me Cry ;)

    You and yours will be in my Prayers, for what they're worth!

    God Love You and again, thank you for Humanity's Brownie Points ♥

  8. I've not been around much today and missed this, is there a link to where we can donate? Sorry to hear you are having to have surgery again Sue, I will keep you and your family in my thoughts and prayers, God Bless you xx

  9. The link to the funding page is here:

    Just when I've had enough of the grasping buggers in parliament, and feel completely misanthropic, people in this community remind me that there's a lot of affection & care for one another.

    Best wishes to all of you, and to you, Sue.


    1. You're an inspiration to so many Sue. And you so deserve this help.
      Thinking of you and sending love and prayers for as speedy a recovery as possible.

  10. Best wishes Sue.
    Aren't people amazing?

  11. As I was reading the very same thought came in2 my mind. Let's all donate a little 2 get u a new laptop cause u r my hero & such a fighter & inspiration 2 us all. So happy some1 else did it. I was starting 2 get worried we had not heard from u in a while so when I saw this blog it put an immediate smile on my face. Though after reading it I'm now worried about your operation. All the best for tomorrow. Hope it all goes well which I'm sure it will. You r such a fighter & I luv u babe. Take care xxx

  12. Sorry to hear about all your problems sue if you need any data etc from your old laptop I would be more than happy to do it for you, maybe even get it working. I'm a fully qualified techy with many techy fiends to help as well. You deserve a nice new lap top though and Ill donate some money when next payment arrives. I do hope the medics you have at Cambridge now are as caring and helpful as the medics I see there. all the very best of wishes.


  13. Take Care, Sue. This just reflects the admiration people hold for you, the thanks so many have to give to you and the love everyone has for someone who has worked so selflessly for such a worthy cause. Hope everything tomorrow goes well. Take care.

  14. I can't help wondering why nobody was checking on you during the night, to see that your drip feed had become disconnected. You must have felt the loss of all that nourishment.

  15. Sue - you are an inspiration and example to us all - and it's the politicians who should be saying this, not me - but since they won't, I do say it. So sad to hear that you're having to go through yet another operation, and we'll all be thinking of you. Love, hugs and peace to you, to Dave and to the children. Jeni

  16. Brian McAlorum1 May 2012 at 12:28

    The Poet: Rumi writes -

    Don’t turn away… keep your gaze on the bandaged place, that’s where the light enters you.

    Rumi I believe was trying to say: through the body, and in particular through our pains and sorrows – the body has so much knowledge and truth to offer us…

    I sincerely wish you a peaceful heart and a contented mind, and may your stay in hospital be a catalyst and inspiration for quiet reflection and healing...

    All my love to you

  17. All the very best sue for your operation and my very warmest regards to your family

  18. It is obvious to anyone that you have a debilitating illness,yet they turned you down for DLA.It seems to me you were turned down because you are a truth seeker.The ConDems don't like the truth with evil little toads like Baldy Man running the DWP.

    If you had been on the DLA,to which you should be entitled you could have repaired the car you so desperately need.This is what makes this Government so Sick and Evil.They attack the weakest in society.

  19. What kind of nurses don't check on ANY patient all night, nevermind someone on a drip of any kind? As an ex-nurse, I find this absolutely shocking and negligent. Drips often "tissue" so that the fluid doesn't get dripped in properly. This means either the flow rate needs to be adjusted to make up for it - which needs constant checking - or the cannula needs changing. In my day, patients on drips would have been regularly checked and EVERYONE would have been checked on a routine "ward round" at night,by torchlight, so as not to wake people up, at least 2 hourly during the night,turning people over who could not turn themselves to prevent bed sores, quite apart from the fact that we would have always been in one bay or another actually looking after patients, and so aware of what was going on.

    Last time I was in hospital, the nurses sat at their station all night, ordered takeaway, making tea for themselves, going for fag breaks (which they denied the patients) talking loudly with all the main lights left on so no one could sleep. We would have been sacked for just one of those things.

    And I have not forgotten that yesterday was the day when people on Contributory ESA, like you, for one year, will have lost it all.

    Dear God, what has this country become?

    Will be thinking of you Sue and praying for a speedy recovery.

    1. Yes I agree, this must be negligence, and should surely be pursued as such. Obviously the most serious issue is one of potential harm coming to Sue as a result of not having the drip go in properly, but it also occurs to me that Sue's laptop was ruined as a result of this negligence, and I think the hospital should give her a new one! (But thanks to the person who posted the donation link here in the interim - it's good to know we can help in some small way)

    2. Yes, Findlow, I believe it is negligence. Sue has lost vital nutrients, when she is already weak, just before surgery. But what if they are not checking on any other patients on drips? A severely dehydrated person, on a saline drip, if this happened, not getting the fluid they need, could become so dehydrated they get kidney failure. A tissued drip,as they often are, opened up to run faster, if not regularly checked, can potentially suddenly clear, and dump the whole lot in, in a very short space of time. This could also potentially kill someone with fluid overload causing electrolyte imbalance or heart failure. Where were the nurses?
      Frankly today's nurses (when combined with all the stories on Sue's previous thread,) swiftly need a good sorting out or sacking. The standard of care is too often abysmal. Florence Nightingale would soon sort them out, no problem.

  20. [QUOTE]AnonymousMay 1, 2012 05:31 AM

    It is obvious to anyone that you have a debilitating illness,yet they turned you down for DLA.It seems to me you were turned down because you are a truth seeker.The ConDems don't like the truth with evil little toads like Baldy Man running the DWP.

    If you had been on the DLA,to which you should be entitled you could have repaired the car you so desperately need.This is what makes this Government so Sick and Evil.They attack the weakest in society.[/QUOTE]

    very true I'm surprised that the government hasn't taken the blog down sue is like me very weak just living by a thread and then all of a sudden you get a large tax demand come through for payment out of the blue so the pressure is always on the very weakest the only respite they can ever get is in hospital it's the only sacred place left

    What i can say for certain you must never ever show your weakness otherwise they will kill you with stress and that's for certain. They have been trying to kill me off for years but I'm still winning but living in a constant battlefield with the DWP/Taxman is very tiring just imagine having to talk 365 days a year about the DWP and tax only the very hardest could survive a weekly onslaught thank god i have a good support structure but even so it's very tiring even for a pro

    In my lifetime I've had two professional advisers kill themselves through the helping of myself and have known many more who have struggled to help those in need and then gone on to commit suicide

    Looking after me is not a job for the faint hearted but only for the very strongest of minds and souls

  21. I would echo the points that others have made. The money for the laptop has been donated by people who have appreciated all the work you have done that has helped so many others to raise the issues of benefit reform with MPs etc.
    I also think the point made by another commenter about the loss of benefits such as ESA and DLA is so clearly demonstrated. Without these essential benefits how will people be able to afford to repair and replace vital peices of equipment. Really Really scary.
    Look after yourself and I wish you well.

  22. I really hope your surgery goes well, Sue. Take care. x

  23. My jaw is dropping in awe of the fact that you've managed to struggle through the hospital to write this, while so very ill, post drip-disaster, and facing surgery. THANK YOU SUE! I so hope your latest blog gets a wide coverage - as always, it's a real one-in-the eye for anyone who persists in believing government-peddled "scrounger" rhetoric. Your modest little sentence: "I'm afraid I've rather taken a turn for the worse" is a master of understatement considering all you are going through, and indeed go through on a daily basis. The very best of luck with your surgery tomorrow; strength and love to you and your family.

  24. Good luck for your operation Sue, and not being so worried about money/laptop etc can only help.
    Your family need you weller and so do the spartaci, you're such an inspiration. Know that there are so many people sending you good vibes and healing energy, not just because of what you do, but for who you are.
    God bless xx

  25. Hugsssss from a stranger who feels as though she knows you. xxxx

  26. They should have checked you more often!!!Feeds like that need to be checked on every couple of hours.They were negligent,and they owe YOU for the laptop damage.

  27. Best of Luck...You are true inspiration. Thinking of you and your family, please take care. You are a brilliant writer and we need you.

  28. good luck and take care.

  29. I think for many of us it can feel so helpless to see brilliant people like you so unwell and nothing we (or you) can do can change that and we have to trust in your medical care.

    A collection of microdonations was something we could do. We saw you really despair after so many saddening events and difficulties so knowing between us we did good and made a difference is worth more than the pounds and pence any of us donated.

    I felt great knowing I'd played a small part in making your day/life less shit, and when I was on benefits I would have felt even better as it was easy to feel I didn't do anything worthwhile. It's something between us we could do. As a community we're better than political crap and we do our best to look out for one another.

  30. You are a Woman of spirit and a inner strength that would put men like me to shame in contrast.I think I would have lost it had I to go through what happened to you.

    You keep on keeping on,when the going gets tough you get tougher.That is what the Condems fail to understand.You are not going to go away quietly.You don't give up and fight for yours,and our beliefs.You are not afraid to go public and forgo your anonymity.

    Kudos to you Sue.Baldy Man would have grey hairs had he any left taking on the likes of you.

  31. I haven't visited regularly for a while and was shocked to hear that you are so ill again. It is an outrage that you do not qualify for DLA. What an awful country we now live in when the over privileged, the healthy and abled bodied turn their backs on those whose lives are a struggle with chronic illness and disability. It is difficult enough struggling from day to day with illness and disability without the continual contention with the government to get simply the very basics of financial and other support along with the constant pressure to seek jobs that we cannot cope with. The government are a disgrace. Lets hope that recent events concerning the council elections will be a step forward to seeing an end to their inhumane and unnecessary policies, an end to their time in government. One outrage after another you have wonder what is to happen next.

    Thank you for all you have done for the cause of justice for all of us who suffer in any way. I wish you a speedy recovery. All the best to you and your family. Hoping for happier times for you and for us all.

  32. Wonderful news, the donations, not the laptop disaster, so this is the real 'big society' stuff you Cameron!