Hand of Cards

Otherwise known as oops, I did it again.

What you may ask?

Well, I’ve got a little bit of a radar for patterns and I was getting a little bit worried as October progressed because after October, November follows (naturally) and I haven’t really got such a good track record when it comes to Novembers.  Do you remember the bounce?  Do you remember the bonce? I do.  And the most important thing I learnt was that I never want to repeat either experience ever again.  (In fact, having watched a few too many episodes of emergency services documentaries of late, I have been made increasingly and uncomfortably aware of how fortunate I was, falling that far with such minimal damage to me or anything else).

I don’t want my fear or superstition to lead to clumsiness.  I tell myself that it was just a random thing, a chance thing that both of those cheerful incidents occurred within the same month.  Maybe November just isn’t a good time of year in my world; it’s getting dark, the clocks have changed, the lurgis are flying …

What scares me most though is that I don’t seem to be getting any better.  There, I admit it.  I admit that first, I’m scared and second, that I’m not getting any better.  I’m used to the ebb and flow of this wretched illness but the tide doesn’t seem to be turning in my favour any more (seeing as we’re going with sea metaphors in this sentence.  Are they metaphors?  I can’t remember).  I keep expecting to feel better, there’s so much that I want to do once I’m feeling a little better.  It’s boring and frustrating living with this level of exhaustion where being able to sit on the sofa, feet up, propped up, is an exciting treat, instead of having to lie in bed all day.  And I’m a burden.  I feel that I am such a burden, a boring, never-ending burden.  My management strategy for ME was to be ill in my own private space and time and it just isn’t respecting that any more.  I can’t pretend to be well any more, I can’t save up my energy for the necessitous splurges that life requires because I don’t have any, full stop.  I am tired and ill wherever I go, whenever.  And that sucks.  I liked being able to pretend.  I liked being in control.  I liked not having to impact on others.  I liked not making a fuss.

So November?  Well, I don’t think I can get any worse than it is at the moment.  Hopefully.  But I may just have scored a hat trick.  And it’s nothing to do with that Western hat that I insist on wearing.

I have sharp fingernails.  I have skin that marks easily.  So lying in bed, in the dark, attempting to sleep after what could only be described as a totally crazy day, I wasn’t too surprised when I felt a scab on my ear.  I probably nicked it with my nail, I thought, and didn’t think anything more of it.  Sunday night, after yet another crazy day (I managed these two days thanks to careful abuse of caffeine (a usually verboten substance to sensitive little me) and sugar and have spent an entire week, so far, recovering in bed), it was still there and it wasn’t just a little scab line from a scratch either.  I was mystified.  I cleaned it up and went to bed.  Or it may have been Monday morning, I don’t really remember because my Memory has long since departed.  (I miss it still).  By lunchtime this rather large scab was hanging past my ear and there was blood everywhere.  I don’t do blood, have I said before?  Well, maybe not everywhere, just on my hands and a tissue and enough to worry me.  So I eventually staunched the bleeding and found the scab had disappeared and I was left with a rather large section of my earlobe missing.  To say I was distressed is putting it mildly.

I don’t like to lose a chunk of my ear (OK, maybe not a chunk but a large piece of skin about yea big and so deep) without being duly informed of how and why.  Is that really so unreasonable?  But I couldn’t account for it.

Last night, lying in bed (because that’s where I’ve been all week anyway) I had a little light bulb moment.  (Will ideas come slower to this generation’s children because they’re being raised with those eco-light bulbs?)  I remember, vaguely, very vaguely, catching my ear on the hair straighteners either last Friday night or Saturday morning (I told you, my memory is a distant, hazy memory).  Can you see where this is going?

I’m missing a chunk (OK, see above) from my ear and the scab is yellow-ish not brown like as if I’d cut myself and I had thought that was unusual but I couldn’t remember why I know that there’s two colours of scabs (at least!).  Oh, and it’s itching like crazy.  But of course I didn’t think anything of it because my ears always itch and I can’t do anything about it.  But this is quite a specific itch, I’ve felt this itch before … Hmmm.

I don’t quite know how I’d manage to do myself quite so much damage with the straighteners; after all, my reaction times are usually pretty good.  And I know that I don’t even hold it very close a lot of the time because I worry about burning myself and I haven’t got that kind of patience and coordination.  But … There’s always that ‘but’ isn’t there?  I was trying to make an effort to look nice (AKA, mostly presentable) and I was tired.  I’m always tired at the moment.  I don’t think my reaction times, nor even my level of awareness, are quite what I think they are at the moment.  They’re definitely not likely to be anywhere near where they should be.

I may have burnt my ear (and maybe my head as well because there’s a very particular itch going on up there too), I may also be the person who left the gas on the other night … Yeah.  I don’t quite know how I descended to such levels of ineptitude but I don’t feel safe any more, I just don’t feel safe.  And feeling safe is such an important thing.  And you expect lots of outside things to take away your feeling of ‘safeness’ not yourself.  It’s such a horrible thing to lose, along with your memory, and I totally blame Mongrel Beast.  But even that doesn’t make me feel any better.

So, I don’t think I even made it into November this year.  Or maybe there’s worse yet to come.  Personally, I don’t even want to think about it and if you don’t mind, I’m off to have a nap.


Inside Out


Boots at the Beach

~ Trigger Alert ~

Tall, skinny, fair … I had it all.  The only problem was that those adjectives only applied in my family; anyone over five foot and less than a size eighteen qualified.  To the rest of the world, what was I?  What am I?

I’ve always struggled to see myself from the outside.  I know myself quite well from the inside and I wish that was the part more people focused on or took their first impressions from.  In my mind, I’m just some sort of amorphous gingerbread person and that kind of works for me.  Until I come face to face with a mirror or have to make some kind of superlative effort for an event or do or some such.  Then I struggle.  I struggle a lot.

I don’t understand the how much less the why of the external.  It confuses me when I try to approach the subject, I can’t get an easy handle on it.  I’m aware that females of the species do seem to spend extended periods of their childhood or adolescence practicing hairdos and face painting.  I seem to have missed that memo.  It was never on my to do list.  Maybe it’s me.  Maybe I just had other things to deal with as a teenager.  But part of me always ends up asking ‘why should I bother?’ and I don’t have any answers for myself because I don’t even know quite what that questions involves.

I think it sucks that women, in particular, are constantly bombarded with unattainable, unrealistic messages from some disturbed authority about who they should be, how they should, what they should look like.  I don’t buy in to that.  So I ask myself ‘why do I want to try to look good?’  Am I doing for others, because ‘society’ tells me that I should?  If I’m honest, I know that the ideal shape in an ideal world is straight up, straight down and skinny with it.  That’s my ideal world, not anyone else’s.  I’m a little envious of anyone who has this shape.   Simply because it would make clothes buying a lot easier.  But do I desire to be that shape?  Do I expect everyone to be this shape?  No.  When I cast my mind over people that I know, a few of them are but most of them are not.  I do not think worse or less of the others.  It doesn’t exactly feature in my mental top trumps list of attributes for anyone.  I value the inside more.

So if I’m not doing for others, who am I doing it for?  Is it alright to want to feel nice, to look good simply for oneself?  Is that not vanity or pride?  I eschew both of those.  I’m pretty good at self-neglect.  Most of the daily, never-ending  rituals of hygiene and prettification become wearisome and boring to me.  Should I make an effort?  Why?

I want to be the girl I was once.  For a brief window in my early twenties, I seemed to have it all.  I was a happy size eight.  A size that I had never even been raised to contemplate.  But then my physical health was fairly good; I was active – dance and movement classes; walking; even some football.  I was busy.  I was young.

I like to be ‘skinny’ simply because it makes me different from the rest of my family.  I associate it with being healthy, with being active and with being in control.  They are all things that I wish for right now.  But my life has changed.  My health has changed.  Nearly a decade on, how can I be the same person?

I don’t want this to be a slippery slope, an upwards descent to ever larger clothes sizes.  I don’t want people saying things like ‘I told you so, I knew it would catch up with you one day’.  I don’t want that.  But what can I do?

I never know whether it’s the clothes that are getting tighter or whether they just feel tight.  (Mongrel beast’s good old allodynia is alive and well).  Sizes are getting smaller too. I have some old pairs of jeans in the cupboard (they’re all worn out now) and they’re all the same brand, all the same size but there’s a difference of about two inches from the skinniest to the widest.  A straight up, straight down skinny friend of mine told me that her jeans were a size twelve.  I wondered what hope there was for me then when she’s like a quarter of the size I am.  Am I destined for a not-yet-invented size forty-eight or something?!

This body of mine is Chronically Ill.  I don’t have the choice to exercise.  Some days (alright, some weeks even), exercise is trying to make it to the bathroom.  I don’t do things for pleasure, for fun.  I can’t walk into town for a bottle of milk.  How am I meant to be in control of this body?  This is a body that fights IBS, that bloats and swells; this is a body that fights ME, that sags and puffs.  I have skin that shows every blemish and every mark.  I have skin that hates stress.

I’m not in control of my body.  I’m not in control of anything actually.  And that frightens me sometimes.  Being in control is important to me.  So perhaps that’s why I’d like to claw a little something back, just something sometimes so that I can feel a little bit good about myself, about who I am.  I get fed up of pyjamas and duvets and unbrushed hair.  I want to be in control, I want to feel nice once in a while.  Or at least kid myself that might be the case.

A Daily Photo


I want to be inspired.  I want to create.

Then life gets in the way.

I decided a couple of weeks ago, when things were momentarily feeling a little brighter, easier, better, that I’d love to do a photo-a-day project.  I love the idea of the challenge and the dedication that it would require.  I love the idea of being prompted, of seeking out creative (aka idiosyncratic) responses, of responding, of making, of sharing.  It’d be a perfect project.

Then life gets in the way.

I managed two days.

But it’s hard to be inspired, it’s hard to be creative; in fact, it’s hard to even lift a camera much less attempt to operate the thing and never mind being creative with the thing.

Life gets in the way.

My head and my heart are often far more active than my body; they want, they aspire, they desire.  But the physical me just lies weakly on the bed, wondering about having the strength to turn over.

Life gets in the way.

There’s so much that I want to be and do.  When the lugubrious grey cloud of Depression lifts, I want to embrace the world and engage with, well, everything.  And all at once, preferably!

Then life gets in the way.

I managed two days.

But on the plus side, I did learn myself some new editing techniques.

Does trying count?  Does wanting to count?

Daily - 080813 - My Favourite Necklace

Daily - 090813 - Pinky Plums from the Garden

Four Legs


Five Legs (Two in DMs, Two Trekking 'Legs' and A Friend's Stick)

What has four legs and goes painfully slowly?

Yep, that’s right.  Me.  I’ve succumbed.  I’m using my other leg.

(They come in pairs.  I’ve been steadfastly refusing to use both, that’s just ostentatious.  I’d been keeping the other one for ‘spare’ and training Husband to forget all about it).

It started back in the winter when I had to go out in the snow, I knew that I couldn’t manage with just the one additional leg so I reluctantly gave way to my practical side and took out the extra one.  You see when I first started out with the dreaded leg, one was a good place as any to start.  (In other words, one was bad enough).  And when you’re just using it to ‘guide’ you then it’s fine but if things don’t get any better (in other words, get worse) then actually the one extra leg causes balance problems.  It’s very hard, and dangerous, leaning all your weight in one direction and that was why, when faced with snow and ice, I had to make the sensible, mature decision that I needed to balance myself out.

(I often recognise the need for balance, metaphorically especially, but I’m not so good at addressing the need and doing something about it.  I don’t always like to face reality and sometimes I just don’t have a clue what to do about it).

Even though the snow went away, the extra leg didn’t.

For short hops in other people’s cars, of course I gladly leave the fourth one behind but it keeps joining me more and more on more and more occasions.

It’s handy having both; I don’t list so much any more.  In fact if I try to be optimistic (in a wry sort of way at least), there are even perks.  For example, when I do want to be emphatic, I can use one for gesturing and articulating whilst still holding myself steady on the other one.  At times the steady ‘clunk’ of my extra legs’ feet makes me feel a little more solid or even entertains me.  (I especially appreciate the robotic, probably arachnid, monster from the films footsteps that I can make going over the footbridge.  But then sometimes I don’t even have the energy to clunk enthusiastically).  Sticks are great for drawing pictures in the sand and like gesturing, I can lean on one and express myself with the other.  I’d really love to be able to swing myself up on my legs but as arm strength has never been available to me (I’ve never mastered the monkey bars unless my feet can reach the floor) and definitely isn’t any more, I don’t think that’s going to happen any time soon.  Sadly.  (I also don’t think the legs are of suitable build to take such gymnastics either).

However uncomfortable I am about my need for these legs (which is why I make as many jokes about them as possible), I’ve kind of got used to it again,  Like any change, you resist for a while but you slowly adapt.  Maybe even accept.

Because when I walked into the (new) dentist who went:

‘Oh my goodness, what happened to you?!’

I started looking around myself, trying to discover what disaster had unknowingly befallen me on the way there.  I hadn’t noticed anything, Husband hadn’t said anything.  What on earth had happened?!

I obviously looked confused because he expounded:

‘Your leg, have you hurt it?’

Obligingly, I examined my legs to see if blood or something was pouring from them.  (I would have hoped I’d notice something like that).  Then it dawned on me.

‘Oh my legs!’

I gestured, wriggling them helpfully in his direction.  I grinned.

‘No, that’s just normal.’

I’m getting used to having four legs.

Four-wheeled drive, it’s all the rage isn’t it?

Loss of Self


Arum Lily in Black and White

(Can I tell you a secret?

I grieve.

There are moments when I am broken in spirit and overwhelmed by a profound sense of loss.  I try to remind myself that there are countless thousands, if not millions, of people who are in a worse position than I am but my heart won’t listen.  I put a brave face on to the outside world, set that stiff upper lip but all the time my heart is breaking.

Most people feel that it’s handing over your self-care to another person that causes a sense of loss, a sense of shame and a complete loss of dignity.  But the reality is that illness, chronic illness, will have robbed you of every last shred of dignity long before you get to that stage.  That dignity comes from our identity, our sense of self.

I cannot think of anything worse than anything to abandon self-care to a stranger, someone appointed by a remote, impersonal power through a collective, communal sense of duty to look after those unable to look after themselves.  There is perhaps slightly more grace in being cared for by loved ones but maybe that’s the point and I speak too rashly and harshly.  Think of just the nursing profession, strangers who dedicate themselves to the care of the needy and vulnerable.  Sometimes we do have to hand ourselves other to strangers, to specialists and to experts, who are best placed to help us.  I think what is needed is trust, we need to be able to build relationships, to connect and to trust, whether that person is a stranger or not, when we hand over the very last vestiges of our dignity and identity.  Perhaps the sense of shame comes only from myself.  A sense of failure too perhaps.

There is that moment where your life divides into two parts, the before and the after, that moment when a doctor or other medical professional gives you that diagnosis.  Perhaps you only hear incomprehensible medical names and terms, perhaps you only comprehend that sense of fear, dread and threat.  But what is lost, and will be lost, is your identity.

If illness only deprived us of being able to climb Mount Everest, of running a marathon every week, of being able to run six international businesses at once … well, wouldn’t that be bliss?  Few of us really would be impacted after all.  But illness, chronic illness, is so much more than that.

I don’t have that clear demarcation, I don’t have the privilege of ‘having been’, I have been ill all of my adult life and in some ways I know nothing else.  That makes me sad, sometimes I feel cheated of my potential, of being able to have a life that I choose.  I’m not one for self-pity but grief doesn’t always rationalise, it is a tidal wave of loss, from which there is no escape.

In fact, it’s when things are going better mentally, when I find a focus that I feel this loss the most strongly.  I cannot be who I want to be.  I cannot be who I am.  I disappoint and frustrate myself.  When I can see so clearly what I want to do, what I want to be and yet this mongrel-beast gets in the way, refuses to let me be, never mind achieve, I grieve.  I have found my feet in one sense but cannot crawl from the bed in the literal.

It’s absolutely crushing.

I don’t want to climb mountains, or run marathons or international businesses, I just want to be me.  All those things that I have worked so hard to achieve, I have worked so hard to find myself and to be comfortable in my skin, to have that dashed away from me, it’s heart-breaking.

And so often it’s the trivial things where I feel that sense of loss so keenly, the sort of thing that you wouldn’t ever think could really matter or be important.  Things like being able to cut vegetables properly.  But when you think about it, it is a skill and one that maybe you had to work at.  It is something small that says a lot about us, whether we cook, whether we enjoy cooking, whether we’re any good at cooking … Instead the sharpest knife becomes blunt and clumsy in uncoordinated hands, food mushes rather than slices, there is no technique and if half the pieces are of similar size, well then, that’s a miracle in its own right.  And all the while, there is that voice inside your head that tells you ‘this isn’t me’.

But it is.

Illness isn’t a straightforward, downward slope to the total loss of dignity either.  It often ebbs and wanes.  Sometimes this can be more painful; you can’t accustom yourself to a level of loss before proceeding, or descending, to the next.  What you can do one week, one day, one hour may quickly become impossible.  You can’t take anything for granted.  Each new setback is enough to make you howl.  If you had the energy.

Our sense of identity is tied so closely to the things that we enjoy.  Not being able to do the activities that we enjoy, not being able to eat the foods that we enjoy … illness leaves no aspect of us, of our identity, untouched.  But it’s not just about not being able to do the things that we enjoy, take for example my knitting.  I love knitting.  It’s one of the few activities that I can consistently manage, although in varying proportions.  But it’s so much more than just a simple activity; it’s so much more than just one of those things that I do.   It’s an expression of personality, of creativity.  It is the way that I express myself.  When a week goes by where I physically cannot knit, I feel that loss keenly.

I don’t know if illness, personified perhaps, does target those specific skills and those things that so clearly define us as us, sometimes it feels like it does, or if perhaps we just feel the loss more in those areas.  If you never had a particular skill or talent then you probably don’t notice or feel that loss so much.

I know that there are people whose memories are bad, totally fallible.  I live with one of them.  This means I have even greater responsibility as a memory-keeper, I remember my memories and those of others.  I’m known for my memory abilities.  I am a guardian of family history and stories.

No more.

I cannot remember what I did yesterday never mind last week.

I cannot remember words or dates or things that I need to do.

Someone will tell me something and I will wonder out loud how they know that.  They then tell me that I told them, just a week ago.

Behind me there is a great void of nothingness, a black hole where memories could and should exist but I remember nothing.

I feel a great sense of shame, embarrassment when faced with the reality of this loss.  Actually, it frightens me more than I care to admit.

In so many ways, this is a loss of self.  I’m losing a skill that I am proud (!) of and I risk losing my history.  In a way, I become homeless, that sense of belonging comes, in the greatest part, through memories and remembered connections.

I have a fear of losing things, my biggest fear is forgetting.  It is why I write, it is why I photograph.  I’m terrified of forgetting.  I always have been.  Memory, remembering is important to me.  And now I am faced with blank spaces, black holes and that nagging feeling that there really is something that should be in my head right now.

And it’s becoming more obvious.  It’s hard to hide your memory problems when you can’t remember anything.  I’m oblivious to what has gone before, I risk repeating things or putting my foot in it, like the example above.

Illness takes everything away from you that is precious, independence, skills, talents, memory.  There is no dignity in being ill, just a profound sense of loss.

I grieve.)

Convenient Food


Baked Beans

It was a pretty amazing invention when you think about it, probably the best thing before and since sliced bread.  A simple container that took food transportation and preservation to a whole new level: the humble tin.

Tinned food is an asset; it’s ideal for emergencies and for those moments when the rest of the cupboard and fridge is bare.  Campers swear by the stuff but caravan-ers shake their head and mutter about towing weights.  You can have vegetables in and out of season, vegetables when you haven’t been to the shops all week.  You can have a meal in minutes.

Tin food.  Great stuff.  What a convenience.

But there’s a problem.

The usefulness of a tin is in its seal.

That seal stands between me and my food.

The tin opener and I are mutual enemies.

It hasn’t always been this way, although tin openers always have a bit of a temperamental reputation.  In the years of my independence, I’ve had to make sure that I have a soft-grip handled one for the moments that my paws get flimsy.  But recently it’s descended into all-out war.  It’s not pretty.

I latch the tin opener onto the lip.

This is usually the most successful moment of the entire operation.

It goes downhill from here on in.

The next trick is to turn the wheel.

I need at least two hands to turn the wheel.

Which rather begs the question of who is to hold the handle.

You need more than two hands to operate a tin opener.

Well, I do anyway.

So I jerk into an awkward dance between turning and holding.

You need to hold tight to get the teeth to bite in.

Guess what?

I can’t.

Not anymore.

Occasionally the teeth mush into the metal, I get hopeful.

Then everything grinds to a halt again.

There is a now a minute gap broken in the seal.

I can see the food.

I can smell the food.

I can touch the food.

(Well maybe with a pinkie finger if I really wanted to try and put my uncoordinated fingers anywhere near the chewed-up metal edges).

It’s at about this point that, having spent an inordinate amount of time in this messy, stressful, exhausting business, my attention is caught by some disaster-in-progress on the hob.

I am now divided.

Do I abandon the tin which is now either spewing or spitting liquid in my direction with each painful twist and jerk as I persuade, sweet-talk, curse and manipulate the opener or, left to its own devices, sits crookedly on the worktop, slightly more bashed than when it first left the cupboard, the tin opener jutting out, jammed in the rim at some impossible angle?

Well my reactions aren’t quite what they used to be.

And neither are my decision-making abilities.

The disaster-in-progress risks ceasing to be in-progress and becoming a too-late.

I swerve, mostly mentally, between one contest and the other.

I can’t cope!

I am overwhelmed.

I, the tin and the rest of the food need rescuing.  Urgently.

Having gone through this very exhausting and dangerous process several times in recent months, I have a new strategy: I don’t open tins.  That’s husband’s job now.

I admit defeat.

I give up.

Although not graciously.

But then there was a glimmer of hope.

Some food tins have ring pulls.

I can open ring pulls.

I am triumphant in my new found talent, a moment of victory and conquest.

I need two thumbs to lever up a ring pull.

This means that I need to clutch the tin, which suddenly has acquired the animate ability to wriggle, between my two wretchedly weak paws and still have enough length and stretch left to manipulate my thumbs under what transpires to be a stubborn, stiff piece of metal.

Sometimes my thumbs win the fight.

Sometimes I have to adopt something that proves that I am indeed a higher being: a tool.

I grab the nearest thing that seems vaguely appropriate, a dinner knife or a teaspoon.

The ring pull is stubborn but so am I.

And I am armed.

With a teaspoon.

The fight is won.

The ring pull is levered up, victory is achieved!

There is a minute gap broken in the seal.

I can see the food.

I can smell the food.

I can touch the food.

Like me, do you get a feeling of having been here before?

And that is as far as I can get.

The pride and jubilation of a battle won is quickly swept aside as the tin wins the war.  Again.

I am stubborn but I know when I am defeated.

I am defeated.

If I want to eat tonight, I will have to surrender; I will have to give the tin over to more capable hands.

Bitterness is not something that I easily succumb to.  Fortunately.  But there’s not much fun in being beaten by a tin of food.  And sometimes I’d just really like some baked beans.

Tinned food, hey?  What a convenience!

Welcome to the Real World


Swan's Head with Dripping Beak

When speccy spoke of pacing the other day, my entire being sighed and nodded knowingly in agreement.  You see, pacing is something of a ‘buzz’ word in chronic illness.  Although it’s not some magical cure-all or panacea, it does rather let the ‘experts’ off the hook.  The responsibility is handed firmly back to the patient, they are to manage their own illness, it is up to them.

Whilst I firmly believe that self-awareness and self-management are important, if not vital, components of maturity, of adult life, this doesn’t quite seem fair.  There was a reason why ‘experts’ were invented after all.  To be left, abandoned, to your own devices can be isolating, frightening and threatening.

It’s sometimes said that the best gift you can give the chronically ill is comprehension.  Support and understanding are absolutely crucial and they have to come from external sources.  Yes, as individuals, we can offer ourselves support and understanding but it’s not the same.  In fact, can any individual really generate and sustain support, understanding, belief, appreciation or acceptance if there is none forthcoming from external sources, the community around them?  (And when someone is chronically ill, can they really physically support themselves?  If they could, they wouldn’t be the ill ones).  This would require almost unfathomably ridiculous levels of self-belief and self-confidence.  I don’t think many of us have those.

Besides, chronic illness eats away at your self-belief and self-confidence.  It destroys value systems.  Even if you never, ever doubted yourself before, it will make you doubt now.  Sometimes you will think that you’re going crazy.  That’s why external sources of belief, support and understanding are so important.  No man is an island, apparently.  We don’t need flattery or lying to, we simply need to be acknowledged, for our illness to be acknowledged.  Or better still, understood.  Appreciated even?

Perhaps, they, those ‘experts’, feel that this approach is temptingly flattering.  You are the expert, you know yourself better than anyone and the nature of your illness too.  You are the expert.  Empowerment in action, another favourite ‘buzz’ word of our times.

However, it carelessly disregards the reality, how the dynamics of self, relationships, community, society really work.  No man is a self-actualised island existing in splendid isolation, an unconnected self on a planet of unrelated life.  As if such an ideal were even possible.  Or healthy.  We humans are cities, places buzzing with connections, with a strong sense of past and a need for a planned, controllable, reliable future.  We have habits, customs.  We are often living to the full extent, if not beyond, of our resources.

When we fall ill, we bring a lot of baggage with us.  Our own expectations, hang-ups, complexes, fears and prejudices.  As well as those of everyone else too.  We cannot be expected to become a self-actualised island in the face of such odds.  Nor should it be required, we are cities after all.

(As a side note, isolation is an often recognised and accepted issue for the chronically ill, so it seems a little unwise to propagate it).

There are other ways too that pacing is fundamentally flawed.

Another situation where the term ‘pacing’ is popular and enthusiastically adopted is in sport.  (If there couldn’t be more difference between these two groups of proponents!)  Top athletes, marathon-runners, you name it, they all talk about pacing, it’s a wonder-word to them too.

However athletes do not exist in isolation.  They are part of a team.  And not just any team either, these aren’t necessarily just their loved ones who for the chronically ill will make up the bulk, if not the entire population, of a support team. Oh no, the athlete is surrounded by ‘experts’.  Whilst it is recognised that he knows himself and his abilities best, he turns to external sources to help manage and advance, he knows that he cannot do it alone.  There will be a coach providing one-to-one support, usually someone who has a wealth of experience and knowledge in a particular sport.  The best coaches know the ropes and they know them inside out, upside down and back to front.  They have the inside story on each challenge that an athlete will face.  And they know their athletes just as well.  They know how to get the best from their athlete, how to maximise their potential, when to push’em and when to ease off.  But these days, it isn’t just the coach who makes up the support team.  These days, there is a vast network of ‘experts’, professionals in diverse fields all bringing their knowledge and experience to bear, to allow the athlete to achieve his potential, there may be nutritionists, physiotherapists, masseurs, sport scientists, doctors, psychologists, administrators, legal experts, public relations specialists … the list goes on.  No athlete is an island.

So with all this support, knowledge, expertise and belief propelling an athlete forward, does pacing actually guarantee a win?  Well, think over some of the interviews you may have heard with athletes after some event or other.  You will hear them talking of peaking too early, of having had a bad day, of the weather being against them, of the altitude being unfavourable, of having two events too close together, of having had troublesome journeys or connections.  Even with all these experts behind them, even with all their own self-belief and training behind them, pacing is fallible.  Highly fallible.  It is not a science.  We humans generate too many variables and respond so differently and unpredictably to situations, even familiar ones.

One Swedish furniture company apparently tests all of their new sofas with a special machine which simulates someone, a rather large someone, jumping on the sofa countless times.  They are measuring endurance.  When those figures are produced, they can then guarantee their furniture for a specific period.

What does this have to do with pacing?  Well, the essence of pacing is endurance.  And how do you measure that in humans?  We are not identical sofas manufactured to exacting standards.  (In fact, I’m pretty sure that some of us feel like second-hand sofas anyway).  But it means that the test is no longer fair because not all the sofas can and will pass.  And think of that old relic in your sitting room, just because it’s rather old and sorry, are you going to throw it out?  Or will you overlook its faults, it weaknesses because it’s deliciously comfortable and been part of your family story for such a long time?

There are other problems too when it comes to measuring endurance in humans, not only are we all built differently but we’re not tested equally either.  The tests that a human faces, even in normal everyday life, are random.  There is no uniform test.  And the tests that humans face are not necessarily designed to be passed with flying colours.  And how do you measure endurance when humans have the unpredictable trait of responding differently in the same circumstances?

Endurance is really the baseline of pacing.  Pacing requires you to establish what you are normally capable of, what you can usually endure.  Once you have established this elusive baseline, you can pace yourself, not exerting yourself beyond this threshold and therefore not exacerbating your condition.  Eventually you will be able to build on the baseline, increasing gradually in baby-steps increments your abilities, your endurance, your baseline.

There is some truth, some science behind this.  But even experienced athletes can find that their baseline fluctuates and that sometimes there are just ‘bad days’.  How much more so for the mere mortal struggling with a chronic illness!

Endurance, I don’t think, can be quantified and measured in humans.  Endurance seems to be one of those qualities that meanders between the physical and the psychological.  There are few things that are clear-cut, black and white where humans are involved.  And whilst an athlete knows that they can run this fast for this long or whatever else their discipline requires of them, a purely physical endurance, how predictable or reliable is chronic illness?  This athlete is an individual with high levels of self-belief and self-confidence, yet whilst he may be able to endure physically, the psychological can knock him for six.   Chronic illness does not neatly exist only in the physical, or mental, there is a great deal of psychological.  We bring all that baggage with us, remember?

So if endurance cannot be quantified and established, fixed at a set rate even one individual, how can pacing really be expected to work?

But then it gets more complicated.  We humans don’t exist at some monotonous baseline; we peak and relax, physically and psychologically.  Our lives are varied.  Even if we had that baseline fixed and we could measure everything we did against it, is that really how humans live?  Just because we are ill, even house- or bedbound, we are humans with a strong sense of will.  We want to do things.  We live in a society where our value is dependent on activity.  We measure success by what we do, how much we do.  There are things that must be done.  Life doesn’t stop when you become ill.  There are still all of these everyday responsibilities to be taken care of.  And there are times, when we just desperately want to do something, maybe to alleviate some of the boredom and frustration of being so ill so much of the time, maybe it’s because we just want a glimpse of our old lives.  We rarely say no.  We’re not programmed to say no.  And so our pacing suffers, even if existed in the first place.  Real life continues around us and continues to have expectations of us.  We also have expectations of ourselves too.  Modern society is not renowned for its measured pace.  And there isn’t much allowance given for the chronically ill.  Pacing goes out the window, you have to live.

Whilst Chronic illness can be boring and frustrating, it isn’t monotonous.  Whilst real life continues to throw challenges us, things that we must do regardless of our health or energy levels, chronic illness itself doesn’t exactly help matters either.  Few chronic illnesses are predictable.  They are not reliable.  Most of them aren’t even quantifiable.  So how can you apply pacing to the untameable?  The worst of chronic illness is never knowing quite how something will affect you until it’s too late.

Pacing allows a veneer of delusion that someone is in control.  That the beast of chronic illness can indeed be tamed, be domesticated and invited into polite society.  It would be a comforting notion if it wasn’t so obviously false.  But yet countless patients dutifully try to implement the impossible, they try to pace themselves, in an almost vain hope of recovery.  If recovery or remission does occur, it rarely seems to be anyone’s hands.  There is no success guaranteed with pacing and yet the patient has had to take full responsibility for the management and successful outcome of their illness.  Is this failure or just stupidity?

I don’t think that pacing can be that panacea; I don’t think it is the solution.  There is an awful lot more involved in humans, in illness and in real life.  Pacing is the equivalent of a highly restrictive calorie-counting diet; it’s punitive and doesn’t take into account those ups and downs, the feasts and famines of real life.  Oh, and they haven’t managed to invent the calorie either.  Pacing is a farce.

We need to be realistic.  We do need to recognise our personal limits and accept that these will often vary.  We need to recognise and accept that if we choose to participate in one activity then it will often be at the cost of something else.  We cannot have everything.  Sometimes we get a look at the cake but it’s rare that we get to eat it.  We need to accept these things for ourselves, to reject all the baggage and activity-dependent value systems that we were brought up with and are surrounded by still.  But we are not islands; we need the people around us to do the same too.  We need their support, belief and understanding in order to live, to be allowed to live at our own pace.