To All The Spoonies – And More So, The Non-Spoonies

I’m sitting here tonight after drinking a 330ml bottle of beer of questionable Commonwealth provenance, slightly on the sour side for my liking but it’s a Sunday night, it’s just something you do, isn’t it?

Well no, it isn’t.  You see, there are millions of us out there in this country who may or may not term themselves “spoonies” but once they read the article by Christine Miserandino (as she was then) at http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ will realise their position in the cutlery pantheon, to stretch a theme a bit.

The fluctuating condition of course goes hand in hand with the Spoon Theory.  I have Crohn’s Disease and was unaware of the spoon family of which I was a member until today, pointed there by Sue Marsh, a redoubtable other Crohner (Crohnser?  Crohno?  “Crohnie” is the sort of thing we would find mildly amusing if just for the look people have on their faces if we were to say it.  You know the look – “that’s terrible, can I laugh at that without offending?”**).  If you aren’t reading Sue’s work, by the way, then you are missing an education and illumination in an area in this country where we are severely lacking.

Anyway, the Spoon Theory is something I had managed to address after a fashion over the years but never put it in anywhere near as tangible terms.  Having a fluctuating condition is just that – Spoon Theory gives you a finite number of spoons in a day, and that number, depending on the day, can go up and down.  The unrelenting joy (oh, the sarcasm is a by-product) of a fluctuating condition is that we never really know what today’s finite number is until we get it.  It’s not enough that we have to count them out, we don’t know how many we have to count out until someone fires the gun.

I used to struggle with a cloth-cutting analogy, but it was to illustrate the progressive bargaining you made when you started to lose, well, your “daily spoons”.  You’d snip a corner, let a small task slide, you’d still maintain a full piece of cloth, only smaller.  Then you’d do it again.  And again.  Before long you’re all offcuts and little cloth, still attempting to bargain with something that refuses to bargain.  Eventually, you have a piece of cloth where the offcut is bigger than the remaining piece.  How did it get that far?  Progressive bargaining.  You were cutting when you needed a needle and thread.

See, it doesn’t quite work?  I tried a graph analogy.  The non-Spoony has a workaday rate of 100.  The Spoony doesn’t have that.  We have a best number, the number that, when the drugs do work, the sun is out and we’re suitably rested, is what we take as our top figure.  It’s never 100 and will never be again.  Let’s say it’s an 85.  That 85 isn’t the norm.  The 100 for the non-Spoony is all but a constant.  The 85 is our best effort – it won’t be there forever, enjoy it for as long as you have it, pray for longevity.

When it drops, it drops on a curve.  The curve steepens over time if untreated, an 85 may go to an 84 overnight but further down, a 50 will drop to a 45 in the same spell.  Again, unwieldy, whereas the Spoon Theory puts it far more simply – your spoon count decreases at the start of the day.

The 85 isn’t for all either – one person’s 85 peak could be 20 points higher than a different person with the same condition.  We all get a different number of spoons at the start of the day.

The question that arises in my mind is just where on the graph, how many spoons, what size cloth do we all have at the start of the day?  How different is one day from the next?  Just how fluctuating is “fluctuating”.

Well, I’m in fair remission at the minute.  I would possibly give myself that 85 – can’t eat a salad or climb Helvellyn, will fall asleep on the bus but ideally nowhere else.  I was diagnosed in 1997, had been symptomatic for up to two years before.  I all but lost the next three years trying to trim that cloth, spending spoons I didn’t have as the medical team who look after me tried to stabilise me and cure an abscess that was there from ’97 and got to see the Millennium.

The thing about being diagnosed when I was is

  1. I was nearly 30.  My own experience before and after diagnosis is that the younger you were diagnosed, the worse you had it.  I was a fully-grown adult, didn’t suffer malnutrition through compromised dietary mineral absorption, hadn’t had my intestines shortened through surgical intervention.
  2. Medicinal advances were such that if there were ever a good time to get Crohn’s, the late 90s would have been it.  Surgery was still common, but medicine was making inroads beyond the relatively ineffective sulphasalazine and steroid roundabout.

The people who have told me over the years how rough I have had it faintly annoy me.  Yes, I don’t have the infinite spoons of the non-disabled but I’ve sat in hospital wards, clinics and treatment facilities and seen “rough”.  I have my problems, I’ve gone through the gamut of Pentasa, antibiotics (including one stint of two years of Flagyl which terrified everyone I know who drinks), steroids (both ends and even the odd jab – you know what I’m talking about), immunosuppresants (Azathioprine and all its inherent liver risks) and the MABs – Infliximab occasionally for several years until I developed allergens (never let anyone tell you anaphylaxis is a hoot) and now Adalimumab.  I suffer occasional mucus, no blood, no rashes, no “eyes”, no “joints” save for that I have mild psoriasis, I don’t have vomiting and my exacerbations tend to be in or near the large bowel.  Everything worsens when the numbers drop (joints, mucus) but CRP and mouth ulcers work as a solid early warning system for me.  “Rough”?  I have “manageable” and a wonderful team behind me.  The condition is rough but I am fortunately responsive.  Save for the three-year abscess, I’ve not needed cutting and my treatment regime has always had access to newer drugs that have kept me ahead of the advances of Crohn’s – medicine keeps finding new “spoons”. My hospital admissions have been few but sufficiently disconcerting.  I am well enough tonight to not need to weigh up the pros and cons of drinking a bottle of beer from Mauritius.

All luck is relative.  I consider myself lucky in that although the body I have that doesn’t work right, it will nevertheless submit to correction and management and do so for lengthy periods.  I consider myself lucky that I have one of the foremost teams in the country managing my condition – there are professionals and within those there are exceptionals and I am lucky enough to have exceptionals.  However, in a backhanded measure of luck, I am lucky enough to know what it is to be ill.  I am in remission but the odd thing about illness is when you’re symptomatic, you can’t remember what it is to be well.  However, in relative wellness, you never, never forget that Bank Holiday in 2002 where you were rolling around the bathroom floor praying to Satan and all his little wizards to take you now because this is beyond the pain anyone should ever have to endure.

Never forget that if you’re not ill and not a professional in the field, you will struggle to understand how a Spoony can “look fine” but be far, far worse off than the person next to you.

Never forget that in the UK, the NHS, the universal weapon we have that seeks to make us well as people under the premise Aneurin Bevan gave us – free at point of contact to all and according to clinical need – is under dire threat.  Its interest by definition is to see us well.  Any paid system has a defined interest in keeping us sick enough to generate business.

Never forget that Nye Bevan considered Conservatives “lower than vermin”.  They are the architects of the decline and demise of the NHS, and the Liberal Democrats, the allies of this vermin, are the equivalent party that dismantled the universal healthcare system that to this day is the only one in the the world to have been stripped from its citizens (Malcom Fraser did it in Australia in 1981)

However, if you’re to take one thing from this article, let it be this; we are still people and we do hurt, even if that’s not your intention.  Read the Spoon Theory.  It might shed some light on it.

 **Of course you can laugh at it.  We still have a sense of humour, you know.  We have to.

Advertisements

No comments yet

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: