Thursday 1 December 2011

So how am I?

I'm ill. Three little letters. Ill. A word so short, you might miss it if I say it quickly. A word so subjective, you will not know what I mean.

Bit-of-a-sniffle ill.
Depressed-and-hopeless ill
Need-a-bit-of-attention ill
Would-death-not-be-better ill

Which one did you think of? What does ill mean to you?

I start from a base of Already-pretty-damn-ill. But that's my "fine." I run to the loo, wearing the hall carpet down as I go. 5 times, 8 times, 12 times a day or more. It makes me weak. Dizzy. Exhausted. Sometimes, after lunch, the need to just sleep is so strong I try closing first one eye, then the next in shifts. I shake as I make my toddler his lunch. Stumble as I carry it in to the lounge. Stars dance and float in the corners of my eyes as I bend to open the washing machine or haul myself wearily from the car.

Occasionally and embarrassingly, I shout out in pain. I might be in a restaurant or a cinema. My vocal chords would appear to get no advance warning. Otherwise I forget the pain is there. A dull backdrop to school nativity plays and boring committee meetings.


But when does "endurance" become "normal"? Oh...... years ago. Sometimes, I spend an hour or so, my face perplexed, wondering just why I've had such a bad day. Friends, with the luxury of objectivity ask me gently if I was up in the night. I nod. "When did you last eat - and keep it down?" I think.....

And the treatments. A parade of pointless poisons. In my case anyway. One made me vomit all day, every day. Another gave me headaches so bad, my consultant feared they were the precursor to a brain tumour. Steroids gave me osteoporosis. Innocent little white drops, dissolving my bones. A calcium sacrifice to the Great Intestines, because nothing matters more than keeping me alive. Bowels rule everything.

And the last option. The real red-button treatment. Sterile little packs, delivered to my door. To be refrigerated. Sharp little needles full of stingy, cold, syrup that I jab into my belly every fortnight. Like a little bit of AIDS. They weaken me. My pesky little T Cells that are supposed to defend me from germs just won't take it easy you see. In my body, they never switch off, turning on me, attacking me, gnawing away at me until something bursts or fills with poison.

The pre-filled syringes make these T Cells lazy, encourage them to take a day or two off. Trouble is, all the other germs get the same memo. A cold, a flu, a chest infection, a virus. Like teenagers who's parent's have gone away for the weekend, the message spreads - Party! Sue's immune system, don't be late!

Which is worse? The constant crohn's or the constant infections? Does it really matter? The results are the same. Dave still has to respond to my SOS when I can't remember my own name through the fever and can't physically get to the kitchen to make the boys their lunch. He still has to risk his own job and rush home to care for us all.

I'm still sitting here, all alone, propped up on pillows, too weak to even have a bath. I'm still looking at the same bedroom walls, too sick to get up and draw the curtains, to let a little light flood in. I'm hungry and a bit cold, but there's still no-one who can wave a magic wand, drop their own lives and come and make me a cup of tea or a hot water bottle.

I'm still sad. I still feel defeated and a bit useless.

I have to tell you today, because tomorrow, or whenever this latest viral-intruder stops thrashing me in his jaws, I will report breezily that I'm "not too bad". I'll look a little thinner, my eyes a little darker.

But today, today I can't even muster denial. Today I know that it won't be long before the bedroom-days get more frequent than the school-run days. Today I realise that my ever constant family and friends are already planning hospital contingencies and compassionate leave. Today I wonder.... just for a flicker of a second..... how long my frail, ravaged little body can stay on the right side of "miracle" Tomorrow, I will believe the answer is forever.

Today, I can't pretend that my 7 yr old is just going on a "play date" after school. No, today, my mind tells me oh so clearly that I'm using up another favour, calling on another chunk of goodwill. Today, I can't pretend that my toddler going to nursery all day is just an "adventure".

No, today I can see that I'm losing the battle. Again.

And of all the ironies, of all the thoughts I am left here with, alone with too much time, I remember that this is a battle the most privileged, the most powerful don't even believe exists. It is a battle politicians believe can be overcome. If I just tried a little harder, dealt with my destructive "illness behaviour," I too, could be a fully paid up, financially productive member of their version of society.

Now isn't that bizarre? And even a little bit sinister?


  1. the notion that you aren't a productive member of this society is indeed bizarre, sinister and frankly absurd. People may not be there but you are not alone - take care Sue x

  2. Ah Sue.
    What I'm about to write will not help at all.
    You are an inspiration; you are brave; you are an example to us all. And you are loved.
    I hope your grim gets less grim.
    And meanwhile you'll be in my thoughts and prayers.

  3. It's very lonely being ill, isn't it?

    Even those who are close and understand and accept what your condition is and what the symptoms are they still can never know what it's like to live with it all the time. In order to do so they'd have to live with it for a year to understand the impact and, of course, you don't WANT them to have to go through that and, anyway, it isn't possible to bring that about in any case.

    I have a few things wrong with me but one of them is severe eczema. So many days I spend all day being itchy and I scratch and bleed. When you tell someone you have eczema you get no sympathy as in most cases it's a mild condition (albeit still irritating) and easy to treat. But the severe form leaves you in terrible discomfort for days on end.

    It's only when I read the Eczema Society's magazine that I finally read stories of people that know just how much of an impact it has on your life and how so many people fall into depression with it. A lot of people experienced the itchiness of a bout of chicken pox as a child and that's one way that people could perhaps understand. But I think we tend to forget those childhood episodes and can't really put ourselves back there and remember it very well. So even if I say I have the itchiness of chicken pox but that it never ends I still don't think people would get it.

    It's very lonely being ill.

  4. hugs from another housebound, must try harder person :-(

  5. ill, sick to the back teeth of it one day to the next even one hr to the next.what can you do soldier on i guess but dont have a lot more soldiering in me like you Sue some people jusy dont get it do they and they can be some of your closest friends even. its taken me an age to really find out who to rely on and even then i dont like asking for help assistence. one things for sure just like yours mine and everyone else's it aint going away any time soon. What do i do when i have really bad days lately its just how soon until i become less of a burden on my family and so called friends.

  6. sympathetic noises from Somerset

  7. Dont let anyone make you feel an invalid part of society,keep writing/blogging/tweeting so that the world realises we all have a part to play and a unique gift..hold your head high and give yourself praise due for not giving up,hug.x

  8. Oh, God, yes. Same here, Sue *hugs* And I feel such a failure. Not only am I not being economically 'productive', but physical limitations mean the house looks like shit most of the time. And the family has no living space because we can't afford suitable housing and I have to sleep downstairs in the only reception room.
    How am I today? I'm fine. Hacked off, drugged up to buggery, frightened to death of what the postman might bring...fine.

  9. You do SO much to help people! It's just a 2D version of society that those in power have, they don't see the real side of things; the day in, day out suffering of the sick.

    And for you to have a marriage, a sick father and two little boys on top of your illness is no mean feat. Be proud of yourself and the rest of us will give two fingers to those decision makers and law makers who are stuck in their own ideology.

  10. Most of us are lucky enough to never know your pain. If only wishes could help. Hugs ...

  11. <3 x

    am recovering from poisoning....fumes in my house been affecting me a long time, I read over my journal and realised signs of co poisoning were there in Mat. It cheered me up no end y'day realising how well my body has done to keep me alive really & there were others reasons than my body being a bit slap bang in mid of assessment period...recovering from a suspected pulmonary embolism, taking yet more poison ~ warfarin & wondering how much illness is caused by medical poisoning and how much by the body...forgot to take it last night and my tummy is less severe today....I have different hell to walk in but I have an idea of what your hell is...hugs sweetheart x

  12. May*

    oh am sat here waiting for hospital transport to go to anti-coag clinic...been sat in co at for over an hour but that is ok the electric heater is only on one bar...old heating is condemned & still waiting for new one on a grant to be installed...door just knocked asking me to take parcel in not transport after all...said no...wonder if I will be picked up at time of appointment again this week...anticoag clinic is a bit like a cattle market, timing isn't so important...still 40 mins to appointment time...

  13. Hugs ducks. Understood. My love and my carer The Bear has been adviced by someone to help me by putting things just out of reach
    Not that I was consulted. "To motivate me ". Just plain wrong.

  14. Reminds me of Jonathan Rutherord's investigation into the links between UnumProvident (currently advertising their 'BackUp' private insurance plan) and welfare 'reform'.

    The discussions were based on the assumption that:
    "Illness is a behaviour - 'all the things people say and do that express and communicate their feelings of being unwell' (p39). The degree of illness behaviour is dependent not upon an underlying pathology but on 'individual attitudes and beliefs', as well as 'the social context and culture in which it occurs'. Halligan and Wade are more explicit: 'Personal choice plays an important part in the genesis or maintenance of illness'."


  15. Sue

    Like everyone else on here, I think you are amazing and incredible! Your courage, compassion and articulacy do mean such a lot to others.

    The values of our neo-liberal society are truly repugnant - I am pretty sure in part the contempt of the sick and vulnerable from mean others is a reflection of their own total fear of vulnerability.

    It may be hard but maybe try not to see your need to be cared for as a burden on others so much as a chance for them to demonstrate their love for and compassion towards you as these are great qualities for people to get to demonstrate!

    Love to you


  16. I am so sorry you have had so much pain to endure.

    You are many things, but useless is not one of them. You are an amazing person and your fight for disability rights astounds me.

  17. I'm sorry that that the only thing that I have to offer you is a hug.


  18. I feel for you. I raise my hands in prayer and ask The Almighty to grant you cure and happiness. Your children and husband love you very dearly I'm sure. My mother suffers from Parkinson's disease, the insulting comments break me as much as they do her. Big huge, mug if hot cocoa and a bunch of flowers to brighten ur view of ur bedroom walls. Xox

  19. I wish I could offer more than sympathy.

    Even from the depths of the pain and discomfort you are in, you have a searing and compelling eloquence. You write in such a moving way and help people to understand what it's like to be fighting either the illness or the cure.

    Love to you all. Cxx

  20. Crawls up to Sue blows a little fairy dust and painful crawls away

  21. Big hugs to you sue
    I'm in the same boat as you in not feeling at all good Mystery-virus-ill i think in my case it's been a very difficult year in more ways then one and it isn't over yet anyhow sue keep strong :)

  22. p.s. you are amazing and an inspiration to those of us with less energy to keep fighting

  23. You have just described my daily chore of living !!! I am in so much pain that when I get a moment when it doesnt hurt I feel like I have won the lottery. I cannot believe what this non elected government is doing to us. We are demonised by anything we do. They just dont believe we are ill. After 2 years of appeals the tribunal placed me in the esa work related group. I didnt have it in me to go for the support group. I am now being harrassed by the work programme which is mandatory to attend and run by a hitler protege. They highlight on the wall how many people they have referred back to the dwp for failure to attend the activites so they lose their benefits. So far 254 have had their benefits stopped !! I wonder how many are too ill to attend.

    I am waiting for heart operation, on high dosage morphine and numerous other problems. They think this is someone who can get a job!! The provider asked me what is my barriers to work. My answer my illnesses. The reply well the atos medical report says you can go back to work in 3 months so you must be o.k. My gp has written to them and stated that attending may make my illness worse. The reply the Atos report says il be ok in 3 months !!. I spend 4 days a week at drs, specialist and hospital appointments and I am soooooo tired. The last day of the week I spend hearing why people like me should get a job and not focus on our illnesses. Mind over matter was a phrase used last week on the programme !! I hope my heart finally stops working on their work programme and then they will have proof that my specialists, cardiac surgeons, gps and therapists were not lying and I was actually ill. As you say such a little word but what a huge amount of problems behind it.

  24. Ill or well a valid member of society you are..that's what society is all about us all working to help each other.. you keep it real and you let people know..your struggle. life is a struggle for most people...all varying degrees...without your tale of how it is then it is all to believable that the media suggest that it should be easy. You are an amazing inspiration and should always feel that. Please always stay the tough cookie you clearly are.

  25. molly's comment reminded me of Spike Milligan's epitaph - only now it's no joke!

    Milligan gets last laugh

    Thank you for this wonderful blog Sue, for being remarkably strong and speaking up for others with such eloquence and compassion when you're enduring a daily struggle of your very own. You are truly inspirational. Love to you. Be well very soon x

  26. It is more important than ever that we keep telling our stories. I'm going to write to shiny-headed Dave, fat lot of good it'll do me, but I'm going to list every one of my 100 symptoms (approximately) and how they affect my life. Then I'm going to ask him how I'm fit to work. I'm still on IB at the moment, but I know my medical is coming, and I'm scared to death. If I lose my benefit I will have to go back to work because the strain on my partner will be too much, and then life will become untenable.

    Everyone worried about losing their benefits should write to him. Let's bury the swine in paperwork.

    Sue, I can only offer you a virtual hug. I'm sorry life is kicking the crud out of you - literally x

  27. Dear Sue...
    I see myself so often in your posts. A couple of weeks ago I was feeling much like you are now. I'm sorry you're now feeling so bad and am sending you hugs for what it is worth.

    I am also laughing at myself. I'm feeling relieved that I'm feeling "better". I then suddenly realise that it is almost 4am. I am lying here unable to go to sleep because I have my oxygen turned on and mustn't, but unable to turn it off because I am particularly breathless tonight...
    And this is what I consider "well" and "better" and indeed what I would probably proudly tell people if they ask me how I am feeling. ROFL

    And yet as I have said before, to the despair of friends and family I sometimes wonder if I could do more if I "tried harder". Sinister is a good word to use. Maybe brainwashing would be another.

  28. You remind me of my husband, who battles on like you, for the sake of his family. Only he's not as ill as you, I think, though ill enough. I watch his struggles and I love him for it. Your family do the same for you. I know it.

    You and your family are in my prayers.

  29. Hugs, we know how its exactly. Your not useless your amazing! Shame we cant inject them with the same crapness just for five minutes then yell at them to get on with work.

    We achive a day well done when we can make it to the bathroom instead of peeing in a bucket or have got a drink without collapsing on the kitchen floor or at least collasping and then being able to drag selfs back to sofa.And look at what we all acheive despite all of these, we will beat them because we are expert warriers.

  30. words is all I can offer,may be just reading all the comments will take your mind away for a little while from the pain,I don't have to tell you how many people looks up at you an how this blog is for so many the only place were thay can found comfort and understanding so keep going and hope tomorrow will be a better day lots and lots of love

  31. I'm very sorry you're ill.
    I'm sorry you think you're not provided for adequately.
    The world is not perfect Sue, perhaps if Gordon hadn't given all that money to Africa, there'd be some left? The problem I have with you is the political nature of your piece, which doesn't even try to appreciate the nature of making a 'one size fits all' system - (carefully developed and expanded since 1997 and now running out of money)- expand to take notice of extreme special cases. For every case like you, there's a Paul Mason in the wings, suing the government because they've only saved his life but won't give him cosmetic surgery. I'll state clearly that you have my sympathy, and huge regret that not more can be done - but resources are finite Sue. If only Gordon hadn't wasted so much on the client state.

  32. Thank you Whizjet. That 600 billion surplus business are sitting on must make them feel awfully secure at night.

    Still, as you say, nothing can be done *shakes head in plebian acceptance*

  33. 600 Billion Surplus?
    What planet do you inhabit?
    The Planet Gordon Brown.
    Yet another individual who doesn't understand the difference between debt and deficit, between aspiration and dependency, between inflation and sound money.
    Let me guess -'because you're worth it'
    Doh, no wonder this country is in the mire.

  34. Oh dear Whizjet! Do check your facts my dear (though I realise Tories hate facts with a passion)

    You will find you are quite wrong! As a Tory I thought you would know?? Business have quite enough to get us out of this, did you not see the memo? Gideon knows it? And all the rest of the so called government. Actually they were kind of relying on it. A nice bit of quid-pro-quo from their CEO friends

    Oddly though and NO-ONE can work out how it has happened, business are not prepared to invest their huge piles of cash. Sadly, this government were kind of relying on it. Whoops.

    And yes, it is a surplus and I do know the difference between a deficit and a debt. Do you?

    I can explain it to you if you'd like ;)


    And before you start screaming Unions and lefties, here it is from our very own government....

    Now, how are we going to get them to invest Mr Whizjet? Because your No Alternative line looks shakier by the day doesn't it?

  36. Having read through a few articles on your blog before coming to this one can I just say two things please?
    1: my heart goes out to all of you who are suffering, and I have been moved to tears reading this website
    2: thank god I am not alone. I know that sounds awful, but sometimes, when you are ill, and you can't get out you feel like there is no one out there who understands.

    I have my ATOS assessment to take me from IB to ESA this week. I am terrified. Been on IB a couple of years. I have mental health problems following serious car crash, along with CFS and bowel disease. I am scared I am going to lose all benefit. I haven't been able to even leave the house for a month.

    If I ever become well enough I will stand for election, because I want to give a voice to people who have been through this, as someone that knows about it. However I imagine that if I did, the press would have a field day if they got wind of my mental health troubles.

  37. Whizjet you are not even a Tory, you're just an idiot.
    FYI I actually was 'sucked in' by what seemed like sensible policies by the Tories prior to the present Govt and actually voted for them (I know, slap me).
    Sadly, I can now say that I have never been so let down or disgusted by a group of people in my life.
    I know exactly what Sue means as she described what she is feeling in this blog. I doubt you do. But here is a word of advice... NEVER become over confident, NEVER take your own health for granted.
    One day this blog will be describing you, or your relative / friend / partner / child etc.
    I wonder then how you will react when the minions of the lovely Mr Cameron inform you that although you have terminal cancer, you are still 'fit for work' because you have a prognosis of more than 6 months to live?
    Oh yeah, not to forget now that you best hurry your butt up and get that job, because all of your benefits will be stopped IMMEDIATELY.
    Have fun with that Whizjet

    And as to everyone else.... stay strong. We are better than these 'people'. They are weak and pathetic, they attack us because they are scared of what it will mean for them, and so they convince themselves that they are somehow "different" or "not that type of person". We are all mortal, serious illness or disability can strike anyone at any time.

    Difference is, as I believe I saw mentioned in an earlier reply, we are all hardened warriors by this stage. They are spoiled, terrified kids.

    I know who my money's on......

    Sue, it's good to admit to yourself once in a while just how bad it really is. To let the mask slip and give yourself a break from the constant hard work (yes it is hard work) of putting on an act and trying to get on with life. This site is so important, and any 'guilt' you feel, I think you have made a contribution back to cover it a million times.

    Take Care, stay strong. Falz


  38. I have just found your blog and it is amazing. I know this is an older post but it particularly resonated with me because my days are so similar. Different disability, different symptoms but still. Thank you for your writing. I have made a donation and hope it helps. The work you and so many others are doing is just invaluable.

  39. Normally I am quite positive but the last few days I have been a little sad and I wrote this.

    Broken promises
    withered body empty heart
    so little left now

    You can have it Sue


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