As you may be aware, I suffer from Chronic Fatigue Syndrome/ME and Irritable Bowel Syndrome.  These are "invisible illnesses" - the symptoms aren't visible to you.  I don't have a missing arm, I don't have lesions all over my face, and to look at me you'd probably think I'm just really hung-over.

I'd gotten used to people not seeing that I was ill, gotten used to the disbelief and outright rudeness from others, gotten used to having to explain my illnesses to people through either necessity, or in response to questions asked.  It's a trust thing - if you can't see it, how do you know it's really there?  There's that niggle (or with some people, a shout) in the back of the head that says "it may not be real, they might be after attention/benefits/whatever".  I've seen it, heard it, dealt with it...

...that is until recently.  Back in April a small cut in my right hand became infected.  No biggy, see the doc, get some steroid cream and anti-biotics and that will clear right up, right?  Wrong.  The infection cleared up lovely - my skin did not.  An itchy, horrendous, rash began to spread across the hand and up my fingers, at first sparing my fingertips.  Then it started on my other hand, and also my feet.  Now, when I say itchy, I'm not afraid to admit that I've suffered from a fungal infection or two in the past, I've fallen half-naked into a nettle-bush and once spent nearly 6months with my leg in plaster - I thought I knew what an extreme itch was.  I knew nothing.  This was an itch beyond all comprehension - an itch that literally made my hand numb for all sensation except for the itch.  It blistered all over, it dried up, the skin cracked, then as it was starting to heal the blisters and itch would come back, starting it all over again.

As a result, my hands now often look like this (CAUTION: Don't open if squeamish or eating!) despite being under consultant-dermatologist care, using antihistamines, steroid creams and gallons of moisturiser.

But something else showed up, something far more interesting - understanding, empathy, well-wishes, consideration.  I'm not used to that, I'm used to being made to feel like I'm a shirker despite actually being really ill.  People can see this.  It frightens them.  It makes them withdraw while inhaling sharply before saying "ow", or "that must really hurt".  They empathise, considering how it must feel to have these hands.  People open doors for me.  People write for me (better than get blood and gunk on their pens I suppose)!

I've had to keep them covered for a while, can't touch things without the gloves, and they themselves cause their own set of reactions.  Bear in mind that I generally wear dark colours - a black hat, black shirt and the only bit of colour on me is my blue jeans; but now I have bright white gloves completing my ensemble, a glaring contrast of white on black.

One little girl asked if I was a magician.  I get constant references to Michael Jackson!  A group of adults I overheard were saying "check him out in the hat and gloves!", "yeah, something SERIOUSLY wrong with him!".  I had one 12yo girl snidely comment "ooo, nice gloves!", so I pulled it off, held up my hand and asked "is that better?".  She literally screamed (not an exaggeration), backed off and pretty much begged me to put it on.  Despite it reducing me to a figure of horror and revulsion, I must admit feeling a momentary victory over snotty-commentary with that and went off smiling.

So three reactions to three visibilities of illness.  Invisible illness invites, maybe even causes, suspicion and derision, denial and confrontation, dismissal and depression.  Visible illness elicits sympathy and understanding, empathy and compassion, revulsion and warm-wishes.  Covered visible illness seems to call forth questions, inquiry and even open mockery.

Since April I've had more good-wishes, acceptance and plain-old understanding than I've had in all the years I've had CFS/ME or IBS.  Now while I'm not seeking sympathy for my conditions, it's nice when people at least understand them or take them into consideration when dealing with the consequences of the symptoms (be it me being grumpy, or unreliable, or forgetful, or confused, or easily stressed).

One thing, seeing all three reactions to these three states of illness has been very eye-opening.  It's shown just how people would react were my invisible illnesses visible.  Not all of these reactions are good, but at least they're there.  Even a negative reaction confirms acceptance that there is a condition present - something I'm simply not used to.

It's "adventure season" again, with it's own set of challenges and rewards.  What is it?  Well it's The Boy's school holiday and his mum has taken time off work so we can cram some adventures in - zoos, theme parks, days out, fun stuff - but also very, very tiring stuff.  Already my CFS/ME has taken quite a hit, and we're not done yet.

There is the obvious reward for a parent seeing their children have a great time (and even the not-so-great times, like when The Boy got off the rollercoaster.  "Too fast, too high, too scary"), but it also presents me with things I don't see every day - like Eagles, Pandas, trains in fancy dress and people.  So my camera's getting a workout!

Rather than spam my followers with a ton of deviations, I'm stretching them out a little.

Been very happy with the response to The Bald Eagle, basically tried Street Portraiture style on an animal, and it seems to have worked.

Huge thanks to the people that have 'd and commented - it's appreciated more than you know

Today, the 12th, is CFS/ME awareness day.  It's a manky condition that is like your worst nightmare hangover, but without the fun before-hand and one that ain't going away.

Looking at me you'd not know I have it, most likely.  You might think I'm drunk as I walk down the road, but that's just my balance being off.  You might think I'm slow and lazy, but that's because I just can't go any faster.  You might see me sat with my head in my hands, but I'm not trying to get your attention - it just hurts.

So what is it exactly?  Annoyingly, no-one's really sure.  There was a bit of excitement as a virus was identified as a possible culprit, but unfortunately that seems to have been a non-starter.  It acts like an immuno-deficiency in many ways, leaving you permanently run-down.  You know how you're more likely to get a cold/infection when you've been busy, stressed and on the go for a week?  Yeah, just like that, it leaves you open.

Directly it causes all-sorts of symptoms, migraines and headaches, muscle twitches, aches, pains, swollen glands, "brain fog" (mental confusion), memory loss, inability to regulate your own body temperature... there's more, plenty more, so varied are the symptoms.

Yet one of the biggest themes I've found is that ME/CFS sufferers find ourselves doubted.  We doubt ourselves when we're in a good-patch (called a "boom") - we wonder if we were ever really ill, we wonder if we're finally getting better, we hope...  only for it to be dashed when we hit the next bad-patch (called a "bust").  Others doubt us too - they cannot see our symptoms and they cannot feel what we feel.  We get called malingerers, we get called lazy, work-shy, scroungers.  Almost as if I CHOSE to give up my job and plunge my family into debt.  "Look at you, there's nothing wrong with you!" is a statement I've heard far too many times.
And it's not just strangers.  Friends and family can doubt us - from their point of view all they often see is us resting, and us saying we can't make it to x or do y.
Sometimes it's important strangers - medical professionals sometimes fail to accept the condition, despite national and international professional-body guidance on it.  This is very dangerous when it comes to one of us claiming a sickness benefit, for example.  We get turned away and find ourselves having to fight to prove we're ill, and one thing we're really not up to is the fight.  It's not that I object to the idea of showing that you actually are ill for the purposes of sickness benefits, but the automatic assumption that you must be lying.  I've seen it no-end of times.

"So there's got to be a treatment?", you may ask.  The answer's largely "no".  There's "pacing and grading", which basically means "do less and it hurts less".  Beyond that you're into pain management and alternative therapies, and some of them are completely bonkers - "ozone therapy", where they infuse your blood with ozone!  Mechanical eyeball massager things, melatonin-inducing light setups, even illicit drugs.

So what's left?  Well, we wait, and we hope it goes away.  And until it does, we try and get by as best we can.

Some of us are utterly permanently bed-bound and unable to even feed ourselves.  Some of us are more fortunate and only have mild-level symptoms.  Most are in the middle.

So what do I want?  Your sympathy?  Your good wishes?  No, not really.  I just want you to be aware, given that it's our awareness day, that we're out there.  We're not lazy, we're not workshy, we're not lying, we're not snubbing you by not coming to the pub or by saying "I've gotta go, I need to lay down".  Remember that for me, and I'll consider my work here done

An hour until the Polling Stations close.  If you've not voted yet, get off your arse and get to the booth!

For those gaming deviants out there, and have started hanging out in #GamepadGathering with an eye on starting a group, or just getting some games on.

So console or PC, fellow eXile, from another clan or unclanned totally, pop along and get your butt kicked at some games!