Tuesday 21 February 2012

Why I write this blog

Pssssst! I'm home! *looks around furtively*

We haggled ;) Lovely consultant agreed to a kind of in-patient-at-home arrangement where he will order all the tests I need as urgent, and I will schlep up and down the M11 to get them done.

I know it sounds fairly bonkers, but of all the options available - abandoning poor little broken 3 year old, pushing Dave further into a stress frenzy, squatting in the middle of my Mother-In-Law's life, crumbling under the horror of an in-patient stay etc it was my "preferred option" and Addenbrookes are my "preferred provider." (See what I did there Mr Lansley!!)

The utterly unstoppable Kaliya Franklin folded her indomitable arms (no doubt popping a few joints as she did so) and squared up to Social Services on my behalf. Apparently they weren't mean at all and didn't laugh at her. They phoned back within the hour and a nice lady is going to go through all the options for some support with me today.

Finally, my Mother folded her equally indomitable arms and will be terrifying GPs and dentists all around Sussex once surgeries open. I'd stay indoors if I were you.

Soooo, as usual we have "a plan" or at least a "plan for a plan."

I started writing my blog because I thought that by telling my story, day in, day out, it would give a picture of life with a "fluctuating condition". My life has been a fairly constant basket case for as long as I can remember. You're not just ill - if only!! Noooo, the being ill bit means that everything else in your life is affected. Your finances, your time, your partner and family. I'm sure it can't just be me. Dave and I just sort of lurch from one crisis to the next, trying to manage everything as best we can.

My Dad is 89 and has Parkinson's. Dad's get old. They just do. He needs a lot of care now and has his own crises every month or so - midnight ambulances, pneumonia over Xmas.

But I'm still ill. So then there are two crises to deal with.

We had to move in November. Tenancies expire, they just do.

But I'm still ill. So then there are three crises to deal with.

Dave suffers from depression. He's a carer, he's exhausted, it'd be a miracle if he didn't have depression.

But I'm still ill. So then there are four crises to deal with.

Little one smashed his arm last week. Toddlers hurl themselves off things, they just do.

But I'm still ill. So then there are 5 crises to deal with......

You get the idea. And I KNOW many of you reading this will have lives that are just the same. Because the illness part makes everything else a much bigger crisis.

I write my blog to show my life, but by doing that, it's so that I can show YOUR lives. You know what we don't say often enough? In our quest to be reasonable and convincing and rational?


You need endless positivity to be ill. Endless resilience. You have days where gritting your teeth against the pain or fear just isn't enough. In quiet, desperate, exhausted moments where it seems there is nowhere to turn, no answers, we all crumble. Just getting out of bed can be a major task with an endless string of tasks stretching on towards the horizon.

So, to all the wonderful people who wanted so much to give me money yesterday, to help me out of a fix and make things just a bit easier "Thank you" (If you didn't see the comments on the articles yesterday, do read them. I promise it will restore your faith in human nature http://diaryofabenefitscrounger.blogspot.com/2012/02/reality-of-disability-denial.html )

But this is just my life. If you all give me money you can't afford, (yes, I know some of you were fibbing outrageously when you said it was fine) you'd be paying for me until the kids leave home!!

Nope, other options must be found. I will just have to get my head down, look at our budget and make some big decisions. If I can't earn money now, after the year I just had, the trolls really would have cause to criticise wouldn't they? You'll see, I have no advertising on my site and I always declined any offers from organisations to fund me. Who could I take money from that wouldn't compromise the campaigning I do?

But now, with the bill practically law, I'll just have to find someone who wants to pay me for all this work I've been doing for free. I'm not quite sure who yet, but "something will come up"

Of course, there's still the illness. Always the illness. So it has to be something I can do when I like. It has to pay enough that Dave and I don't miss the tiny support left that we do still get, but that ought to be possible - after all, I'm practically running the DWP already and Dunky-Smith earns a huge wedge ;)

So when I write about my life, I'm always hoping that I'm writing about writing about our lives. I don't need sympathy or glory, I don't need any more help than I always need. I don't want you incredible people to hurt for me I want you to be heard. Hurt for your own losses, your own crises - believe me, I know that they take up most of your strength, every day. Mine are just another story, another life, another utter failure of the system.

It's that failure I want to expose - for all of us. Enough is enough. By telling the world how the state and the systems and the structures fail me I am simply showing how they fail us all.

**By the way, later I will put up another post outlining what the Research Fund was spent on and how much is left. I've been meaning to for weeks. As the fund still looks as though it has £6,000 in it (It definitely doesn't, lol) I'd better lay out how the money was spent.


  1. So relieved that you have bounced back to even this degree Sue! I have everything crossed that with all the joint efforts and hopefully at least some of the support you really should be getting without having to advocate so hard for it, you will have time to just have the one causative issue of the Crohns to deal with. A big ask I know but I'm holding out for you. Wish there was something more I could do. All the very best, Judith

  2. Hi Sue. You appear to me to be a very strong lady and you seem keep your head where others struggle. I hope you are soon 'sorted out' in a nice way that is.
    I love to read your blog and I am learning more about Crohns, from what you write.
    I wish I could help you, but I'm stuck in the East Midlands and I doubt my powerchair could get down to you. Good luck at Addenbrooks, they are a great hospital.
    Best wishes.

  3. As usual you put it perfectly. Was worried about you yesterday and thinking about how you and your family where doing and am glad that it has worked out that you can proceed from home to get the medical attention and yes REST you need, which will come easier being with your children. As for the fund and list no need leave it be. Having a 17 year old autistic child I've been fighting for years for services and now need services myself, it shouldn't be that way, life with an illness or disability is so much harder, so draining in every way that we shouldn't have to fight the government or health services, for the help we need and deserve. Unfortunately, we are up against a bunch of Nazis right now so a major fight has had to pursue; however Sue I have noticed that the Spartacus Report has done more than we first realized, it is actually a continuing work in progress yes I see it in the select committee and the news. Sue and Kaliya and everyone else that worked on the report and did interviews etc. have so much to be proud of, I wish you where well enough to be Prime Minister we would have you voted in in no time flat. Take time Sue, time for you. Actually, the way things continue to unfold, I wouldn't be surprised if we don't manage to get rid of this lot, more and more coming to the surface. Love and gentle hugs to you and your family.

  4. You are an incredible woman, Sue.

  5. I am so encouraged by your work.
    Thank you for your beautiful honesty.
    I love your brave and courageous fight for so many who have no voice.
    So glad that you have friends and family to help you.

  6. So pleased to read that the hospital and friends and family have rallied around again to enable you to come home and finger's tightly crossed , get some of the support you so desperately need. I find your blog so inspirational and totally relate to the trials and tribulations of living with a long term disability and all that entails. I read and no longer feel alone , I read and draw strength to fight another day. Whether you see it or not , you are a remarkable woman, who inspires and gives us a voice every day. Please take care x

  7. All praise and positive vibes to you for your strength, determination, brilliance and huge heart - I hope you know we're sending you all the love you give us day in and day out. Now rest! x

  8. Its too easy to repeat the above but I do echo what has been said. Still not an easy situation but much better than being in hospital as an in patient. Its a lovely feeling when you can walk out the doors of a hospital and know that you are not staying.

    Another tweak has been announced to that works scheme that has been getting hammered where people are working for "Their benefits" alongside people who are being paid and if they walk out(Its voluntary don't you know?)your benefits can stop and that's without(and again the media is missing the one that affects or will affect many on here where disabled and sick can be told to work without a time restriction of say 8 weeks.

    I haven't the details and need to hear it on the radio news again but it aapears a new idea is being announced today and companies who take someone on will now receive £2,000+ but I don't see anything to suggest that a job will actually be available at the end of it.

    And if the idea is to reduce the benefits budget how is paying out this sum on everyone reducing the bill?

    I also heard that 30,000 people(19-21 year olds)have already been through the previous criticised scheme and its taken until now to come to light.

    Proabably due to the media ignoring the situation until demos were held at various venues like Tesco's(they love to see such incidents)to report in the papers or on the tv news, people have just gone along with the scheme and done it probably afraid to say anything in case it afects their entitlements(that's why so many of us on here come on as anon)

  9. Thank you for today's post, Sue. Your voice in your blog is your own. But highlighting and campaigning for change to policies and systems helps to give me a voice, too, when in my world it feels like I have lost my own voice. It's amazing to think that the noise of many voiceless people is so loud.

  10. you're so gracious. You're right multiple problems on top of being ill is hellish and not enough people talk about how complicated things are.
    take care and I'm glad you're an at-home in-patient

  11. Sue, it's down to you and Kaliya and the rest of the great Spartacus movement who have brought enough pressure to, and more recently through, the media, that the bulk of the British public are now starting to wake up to the horrors that the Govt want to inflict on all of us through the NHS and WRB bills. Now you're suffering, it's only right that others should try to help you.

    Thank you and Dave and all your family for having been so tenacious so far. It's up to all of the others who have now been alerted to do the fighting now. Look after yourself now.

    1. Thank goodness for the indomitable arms of your mother and Kaliya - I do so hope you now have tangible help set up. You do indeed speak about all our lives, in telling about yours and the "days when gritting your teeth against the pain and fear just isn't enough". These latest two blogs should be compulsory reading for all MP's and Lords, in fact for everyone whose life is not currently affected by chronic illness or disability.
      I have just received the usual formula letter from my Tory MP in response to my email sent before the WRB Lords' amendment returned to the Commons. He writes:

      "..the Government remains committed to supporting the vulnerable and providing support for all those who need it. However, the Government..does not believe that welfare should be a ifestyle choice..."

      Words fail me.

    2. Findlow - why don't you send them Sue's blog then, let them know what it's really like!!

  12. Are IDS, Grayling et al going to give up being bastards for Lent?

  13. I'm sorry that I didn't read your blog yesterday, Sue, despite it being flagged up to me by several people. It was one of those days when events just overtook the amount of hours available to them.
    That said, I have just read this one and I marvel, yet again, at your wonderful writing, your magnificient wit and your ability to bounce back.
    In the brief time I have come to know you I am filled with nothing but admiration for who you are and what you do. Keep on crazy lady and I will do everything I can to support SPARTACUS because it is the right thing to do.

  14. Glad that things are looking a little more positive today Sue, the news that you don't have to be an in-patient must be a great relief, and I am glad people are rallying around to clobber social services and doctors to try and get what you need. You are right, living with an illness is hard, it seems to produce a domino effect on everything else that happens in our lives. Thank you for everything you do to highlight this to those who just don't understand.

  15. *folds her arms*

    We don't offer money to you as charity, We're offering to pay you for all this work you do for us.

    It's a legitimate job. Take it. ;)

    1. Glad to see your "preferences" being taken into account.
      Exactly, its not charity, my donation was a personal gift to you and your family. Nobody likes their independence being infringed and many find it difficult to ask for help. Angela

  16. Sue,
    Soo glad you have got treatment sorted at home and some help on its way.
    This is what the government don't realise. Having a chronic illness IS A FULL TIME JOB. Getting up to face each day is our achievment. These wimps who criticise us would not last the week before they are calling time out. The relentless pain that they think shouldn't interfere with what you can do. Yeah right! The lack of sleep, the exhaustion. But still we go on, because well, do we have a choice? The lives of talented people can be snatched away in an instant and reduced to the four walls of your house. Why don't the currently able-bodied get that? Tomorrow fate may mean it is their turn.
    This government wants to "get rid" of the sick disabled, one way or another. Pretend that work cures. They think if they have a cold they are brave little soldiers for still turning up to work. Problem is, if you could hypothetically, clear the planet of all sick and disabled people, in an instant, by pressing a button, - within minutes, more would appear. All those born in the next few minutes with a disability. All those involved in a terrible accident. All those who suddenly have a stroke, a heart attack, get diagnosed with some common or rare disease.
    They cannot be rid of us. We are part of the world. we always will be. So, they had better decide what society they want to be part of. One that accepts this and deals with it with humanity. Or one that resorts to the law of the jungle. We hae to hope the public wake up and realise that in their hearts, they are better than that.

  17. Sue, it goes without saying that of course you SHOULD be getting ESA and DLA. However, if the likes of Grayling and IBS insist on their utter idiocy...would it be so bad to advertise, very selectively, on your site. Things which are totally ethical and green, for example, eg Triodos bank which only funds very socially useful and green businesses, small scale.

  18. we all hurt, and are all being hurt by the DWP and IDS who have no idea and aren't listening.
    the DWP are also destroying Working Tax Credits that go to support people like me, who have a LTD (long term disability) who can work (just about) with support, as am on a low-income (less than £100 a week). Right now with WTC plus the disability element it helps to KEEP me working. When the WRB and Universal Credits come in to force then, it all goes down the drain and I'm back to being Unemployed, and going through more WCA tests and ATOS medicals etc, you all get the idea!

    The tide has turned on disability in the UK, and is becoming more and more like how it is treated like in the USA.. where there is NO help, and everyone has to find funds to pay for medical bills, yup that goes for medications too!

    So, if you are left with just a weekly benefit amount of just £56 a week, well then - let me ask:


    this is why we need to continuing to protest against these changes to Welfare, to DLA, to Disability, to Health, to Tax even! - this effects everyone in the UK now.

    So people, friends.. keep on talking!
    If it takes just one person (like Sue Marsh) to raise awareness - then why can't others join the cause too?

    The more voices we have, the more awareness we have for our disability issues and concerns.

    Note for Sue: Keep well, and yes.. keep on going. the fight's not over, and people like me want to play a part in this too. lots of hugs to you and family.

  19. We go because we have no choice and we accept our situation and therefore don't complain and actually play down our conditions. Work and an interest/hobby is probably very good for our souls and well being if you can A)Do it and B)Are not forced to C)They allow for the fact there will be times when you have to say, I cannot come in today as I am having one of my bad periods.

    But you will be battling against your employer and now the Government.

    Grayling is still going on about getting out of the house and doing something throughout the day and having the enthusiasm to do so.

    If you can absolutely prove that someone is lazy that's a different matter but as I may've said elsewhere our curtains downstairs are drawn most of the day but it doesn't mean we're sleeping in... I am in my case being a carer for my ill Mum and trying to also look after my own health problems and living upstairs.

    The idea that because curtains are drawn someone is being lazy is a stereotypical and uninformed view.

  20. Hello sue.I am glad to see you are back home from the hospital and i do really hope that the help you so deserve comes a knockin and it sounds like with your mum and kaliya and the indomitable dave you will get it.I didnt send anything yesterday as i said as i just couldnt get to the bank and couldnt today (waiting in all day for callers...bloody late as usual)bu tomorrow i will go up and put a few quid in the account i use for the paypal thing and it might not be much but it isnt for the fighting fund its for you(i can always put some more in for the fight later) and if you spend it on ice cream for you and the family..or petrol for the car or whatever its up to you its ok by me whatever you do..
    I think you might be coming to realise that this blog of yours isnt just a diarywhatyouwrote..its something that has given a lot of people a focal point in this on going war with those in charge.It has informed and galvanised people far far more than we have yet to realise and for that alone,not to mention the work you and kaliya and the others do, you are a stars and freedom fighters in the true sense of the word.
    I do think the whole fight will morph in to something bigger than the fight against the wrb alone as when you see the reaction the health bill by the excluded proffesional bodies as on the news yeaterday then it all becomes related.After all people like us who are sick/disabled will as time goes on need perhaps more help from the nhs than we would perhaps have needed if the wrb had never come along and atos and its evils was never engaged as it has been.People will get sicker,we know people have dies as direct result, and the health bill will increase its inevitable that it will.WE will become sicker ...rocket science....nope ..common bloody sense ...yep.
    The momentum of the fight will increase once the cuts begin to really bite(they havent yet for many ) and we just might get people to bloody realise...it could happen to them and once its all gone its gone...So for me i really have learnt so much from this blog and i will always support it and you and the others.Anyway i know you can put a little message on that donations thing so mine will say ice cream and cakes so you know its for YOU...right....

    1. Drop the Health Bill e-petition racing ahead, currently at
      154,948 signatures.. anyone who hasn't signed it:


  21. Sue, glad you were able to negotiate a good arrangement with Addenbrookes - which, by the way, is our local hospital. Will look out for you in the WRVS canteen next time I'm there with Himself! Yours and Kaliya's blogs have been an absolute must-read every day for me - have been inspirational and uplifting, and invaluable in explaining political issues and in keeping us focused. Would have been quite lost otherwise.

  22. Yes your blogs are true to what goes on with illness disability and trying to mult task! They explain what it is like and Kaliya blogs are excellent struggling with everything and trying to do your best ,so thank you to you both for this. My life would be a blog similar struggle sick,try, and oh what are the government doing now is the most insecure thing amongst it all.
    when everything is too much I have used ambulance service or got sister on ward to get me a nhs arranged free taxi home, it has eased a lot as two sickies here so if you explain situation if poss could this be an option?
    Also after18 visits regarding social services I ended up with carers assessment, peace of mind and time for me fund.Due to my small ill health pension full care package way too expensive for me, we muster on.
    Hope things ease somewhere for you and your family and good on you ....take care x

  23. So, so glad things worked out as they did - and that maybe social services will offer to help. As far as the offer of accommodation for your husband and kids goes, it still stands if you ever get stuck - although I must admit that the village is a Tory stronghold... If you know in advance I can head home so that Mum and I can entertain the kids (with the help of my wannabe primary-school teacher brother - good practice for him... - and a huge dog); there is a farm shop just down the road from the hospital we could take them to if the hospital visit got too much. You have done so much and should let others take the load off if they can - we want to say thanks in a truly meaningful way xxx

  24. Sue,

    Glad to see you managed to avoid hospitalistion. Our offer of local help here in Cambridge still stands. Any time, just get in touch (via the email in my Profile).

    All the best.

    - nick

  25. Sue you express the complexity of living with disability really well - it is this element of your blog that has always maintained my interest.

  26. Hi Sue,
    I too have Crohn's and it is inspiring to see how you are coping. It's time people were made more aware of this disease, nobody I speak to seems to know what it is apart from one or two who get it mixed up with Irritable Bowel. We all know it's a lot more than that. When I have flare ups I throw up all the time so dehydration usually buys me a ticket to hospital. Type 1 diabetic as well so my fingers are full of holes where I have to test my blood around 8 times a day, more when I can't eat.
    I must admit reading your story is partly like reading my own story, the part about needing endless positivity and resilience...so true.
    Really hope you get a decent run in remission and best of luck for the future. Renny

  27. I am so grateful for what you have done... I am struggling with a variety of conditions including digestive problems including diverticulitis which flares regularly, arthritis, auto-immune thyroiditis, ME, FM etc etc... Life is a round of hospital trips and depression. I am 58, worked for 40 years (I am one of those women particularly affected by the pension changes - it just keeps moving further away) and been on benefits only 2 years. GREAT TIMING! What a nightmare it has all been, but I have no-one to help me. I live alone (divorced), son married and living over 50 miles away, a 90 year old mum I have always supported but who now supports me, no carers, friends who have busy lives and their own problems (although one or two that help enormously). There feels like no hope for improvement in the quality of my life, just the threat of more bullying from the DWP.
    Thank you for all that you have done in raising awareness and you SHOULD be recompensed for the work you do. But I totally understand why you have not done so yet because you have been so utterly uncompromising. Well done. You are a true hero.


  28. This is soooooo Right on so many points. Being Ill is a full time job by itself, even just getting constant colds and Flu Bugs, among other heavier Viruses, constantly with little to no letup EVER, wears you down. Then again I live on my own, with no one to talk to physically or help me and have several fairly serious Mental Health problems( Depression, extreme nerves, and Gender Dysphoria). The struggle to get out of bed is one I am all too familiar with, it just never seems to end!, Thank you for being a voice for people like Ourselves, as Fiona said, you are a True Hero!

  29. Thrive - What on Earth will it take? - A MUST WATCH Documentary http://www.youtube.com/watch?v=woqUkr_DvQQ

    Please watch it from beginning to end it explains so much of why we find ourselves in this horror situation