Tuesday 20 May 2014


Most of us have sat at home watching some kind of reality show or documentary and assessed whether we could meet the challenges they involved. Surely it's part of the human condition to wonder "could I survive in that habitat?" "Could I eat that food - or manage on no food at all?" "Would I cope emotionally?"

Maybe you've wondered how you would have reacted in a war situation or simply could you get through to the last round of Masterchef without collapsing with exhaustion.

I often sit at home and marvel over the terrible and frustrating reality that someone like me would never get a chance to find out but is surely better equipped than most?

I mean can you imagine me applying to go on The Island with Bear Grylls? I already flirt with malnutrition on a daily basis and that's with the might of Mr Tesco at my disposal. They'd laugh me out of the room.

Ditto The Apprentice. How could someone with no "acceptable" work experience prove that they are capable of being Alan Sugar's next apprentice? I imagine that not being able to guarantee you could get out of bed long enough to complete the first day pretty much counts you out. If however you've learnt to plot whole strategies from a bed on a fairly regular basis, you might just surprise him by doubling your money without ever leaving the room.

I suppose I might get luckier on X-Factor as my "make-the-audience-cry-back-story" is pretty strong.

But I'm convinced there's a deeper point here no-on really appreciates. To survive a long term serious illness, you need to compensate. First and most importantly, you must train your brain to overcome the limitations of your body. We all do it to a degree. You have to think strategically all of the time, minimising every last drop of energy needed to complete a task successfully.

You often find yourself fighting life or death decisions with medics or other support workers - will you get the surgery/treatment/drug you so desperately need? You have to, failure just isn't an option. You learn that you pretty much always "can", that there really is no such word as can't when your quality of life depends upon it. And so you learn just how far human beings can be pushed without breaking.

With Crohn's disease like mine, and lots of other conditions, you probably do know what it is to really be hungry. Really hungry, not just 8-hours-since-my-last-square-meal hungry. You may have gone days or even weeks with no solid food at all. Sometimes months unable tot keep even the smallest brigade of calories on the job before they are drowned in a toilet bowl, one way or another. You get used to functioning on empty. Adrenaline often replaces what other people get from food, fueling us in different ways to others. Again, our bodies learn to compensate.

And you will probably have learnt very definitively whether you would be good under torture or not. Every long term illness will have required the patient to undergo a series of tests and procedures that are always "for your own good" but often incredibly difficult to go through. Most patients just go through these things once on their way to a cure. Manning up for a lifetime is quite a different thing. You know from bitter experience that yes, the tube does hurt, no, this won't cure you and no, it won't just be a little bit of blood. Yes the needles do sting, yes, I'm afraid the 2 litres of drink ARE very unpleasant and no, you won't feel fine afterwards.

With a medical drift towards giving general anesthetics for fewer and fewer procedures, you will almost certainly be expected to tolerate the almost-intolerable on your way to treatment. You will probably know how it feels to allow another human being to put a plastic tube through your nose. Or you will have had some kind of implant fitted under your skin whilst awake. You will know how it feels for someone to dig around unsuccessfully to find veins or arteries that just don't want to play, while you sweat and clench your teeth and look away.

As for isolation or separation from society - most of these shows involve removing the participants from their homes and loved ones - most people with serious long term illnesses will have learnt more about these things than others will ever have to learn in a lifetime. Initially you are defined by your "difference" - "she's disabled" or "she's always ill." Then, with that difference in mind you have to let people down all the time because you're too sick to be the friend they need. Or you spend months shut away in a hospital far from friends and family on a fairly regular basis.

You learn the length of time like a martial arts champion. The only way to truly know how long a day is is to sit still through one, in the same place all day, unable to read or follow a TV programme, with no visitors and only the tea trolley to mark the day into sections.

If anyone asks me what Crohn's has taught me the most, I always say patience. I'm impatient by nature and it took so many years for me to learn that I can't make everything happen when I want it to. You can't rush nature, there just isn't a way. You simply have to submit to her. Add on hours waiting for late appointments, many more waiting for desperately needed pain relief, two month waits for tests you need yesterday. 6 month waits to see the only consultant who really understands your unusual new symptom. Months or even years waiting for some government office or another to decide whether to give you any support or not. Wait, wait, wait, wait. You get VERY good at waiting.

So I'd be interested to hear from other "spoonies" about this. Is it just me, or do you all think your conditions have equipped you with coping skills that make the average reality TV star look like a cry-baby?

I think we should pitch for our own show : "A Dozen Crips-Crusoes" or "Vomit Valhalla" Maybe? There could be spin-offs - "Cancer Cove" or "Shipwrecked Shirkers" - we could compete against a few bloated city boys and see who the shirkers really are?

I'm only half joking. I think the public would be astonished to follow the lives of a dozen "ill" people for a while and I'll lay a little bet that we'd all be eating nice fresh fish, sleeping in comfy shelters and hooked up with fresh water by the end of the first day.


  1. These days a lot of disabled people certainly endure a lot of psychological torture; they are put under certain conditions (their disability/illness) then told continually that those conditions do not exist. It's the kind of thing used intentionally to break people mentally. Then that in turn is denied and so it goes on. Given that, every disabled person I've ever encountered displays remarkable strength.

  2. "So I'd be interested to hear from other "spoonies" about this. Is it just me, or do you all think your conditions have equipped you with coping skills that make the average reality TV star look like a cry-baby?"

    My aunt was born with cerebral palsy. She can't use her hands, is deaf, and confined to a wheelchair. She relies on her carers for everything - from getting her up in the morning to cleaning her up after the toilet. She has never cooked herself a meal, stood on the beach and paddled in the sea, made love, enjoyed a concert, been to the toilet on her own or a thousand and one other things that the rest of us (including most of the commenters on here) have done in our lives.

    Due to the *vast* number of people now claiming disability benefits from the government, she gets very little to live on despite her terrible condition.

    She is just approaching her sixty fifth birthday. She is cheerful and happy and has an outlook on life that would put most of us to shame. So yes, she has been equipped with quite amazing coping skills. As to whether the same can be said for some of the posters on here - I'm not so sure.

    1. I'm baffled by your last sentence - when you posted it there was only one comment ahead of yours so I have to ask - to whom are you referring?

  3. I agree with Jan, too. The DWP tries every psychologically destructive technique in their evil arsenal to grind you down. It really is life or death for us, with the weakest being culled the fastest.

    I'd say we are mentally more equipped for The Hunger Games, as this is what the DWP puts us through on a daily basis as we wait for the postman to deliver 'that' letter. And in this game people die. Like us. And in this game the government organises it all. Like with ESA.

    Unfortunately, we can't just shout "I'm a crip, get me out of here!" to make it all go away.

    I know what you are going through as I have UC. Since the onset of the governments orchestrated campaign against people like us I have failed to go into remission even once in the last 2 years - an unprecedented situation in the 32 years I have had this disease. That's despite 2 years of steroid treatment on top of the other imune-supressants I have to take in ever increasing quantities.

    And I see no real progress in getting this dystopian nightmare of a game to end.

  4. I suspect it's the might of Mr Tesco that could be behind your problem. When we lost the use of the Commons tro feed ourselves from we became prey to those who pretend to nurture us but in reality milk us for profit.Even if they only manage to make a meal or two every few days from the natural ingredients found on The Island, they'll be eating a whole lot more healthily than you and the majority of other Britons are. They'll be eating a sugar and trans-fats free diet, and if you look at the ingredients in Tesco you'll find that's almost impossible to do from there. We're being slowly poisoned for profit, and I suspect future generations, better educated in these matters than we are, will have a hard time deciding which was Blair's most inhumane act; bombing Iraq or knighting Terry Leahy.

    1. Ah Bill, quite. As you know, I kicked Mr Tesc and his like into touch a few years ago and already ate very simply compared to many people these days I imagine. Lately I've embarked on a new regime that I suspect many would find onerous requiring a lot of fresh fruit and veg juicing, lots of pulses and fish and whole grain, snacking on nuts instead of rubbish etc.

      But the difference is immediate and always surprising. It really makes you feel completely different and is it really that onerous? I just buy different things, that's all. I have to go to the greengrocer more often and I only use a little meat and can make sure that's of a good quality.

      It's no more or less onerous than stuff we eat now, we just don't eat that way any more and it takes an effort to get back to it. Simple basic med diets aren't as easy to follow here, but it's just a mindset really

    2. Well I didn't know actually as while we've touched on it we've not discussed it. I'm relieved to hear it though :-)

    3. Can't agree I'm afraid. Very much like Sue, we eat a healthy, additive free, diet because of our health conditions!

  5. Like many of us spoonies, I spend most of my life lying in or on my bed, taking a ridiculous cocktail of drugs that render most people unconscious. But I've learned how to run a social enterprise (with a laptop suspended above me and a phone by my side), and employ people who are also disabled and work remotely from home. I'm lucky in that occasionally I can be driven to work-related appointments where I can stand for a while with a back brace and neck collar (sitting is beyond me these days).

    So yes, I think us spoonies are probably stronger (can stand more pain for longer) and more creative (having to find alternatives ways of doing things most take for granted) than most of the rest of the population. Pity we can't get paid for it!

  6. I definitely think we're very experienced in the "surviving on very little sleep" department. Those who are obsessed with getting their 8 hours a night would really struggle with the bits of sleep many of us get when pain is bad.... I guess that's top of my pile because that's my biggest problem these days. I know I don't cope that well, but I reckon I cope easily as well as many of these celebrity jungle residents!!

  7. ...'do you all think your conditions have equipped you with coping skills that make the average reality TV star look like a cry-baby?' Yes, yes, yes!

  8. I tend to go more for the post-apocalyse imaginings. I think I'd last at most a month. Insulin only lasts a month outside the fridge. so I'd be in ketoacidosis shortly after, and dead shortly after that. If I lost or broke my glasses, that would be it - no picking up a pair of these 'off the shelf'. If you add zombies into the mix, or anything that needs to be run from, then I'm probably gone on day one.

  9. Liz Carr, a disability campaigner and actress, the wheelie in Silent Witness and ex-presenter of BBC Ouch, used to be in a group of disabled female comics called The Nasty Girls. One of their sketches was The Weakest Crip. They were edgy and very funny.http://exchange.nottingham.ac.uk/time-to-stand-up-and-be-counted/

  10. Did you ever see Cast Offs? A mock-umentary (made by disabled people) about what you're proposing. The message isn't the same, but maybe you could commission a second series...?


  11. I think you are a remarkable writter... x