Friday, 29 November 2013

The Silent Force

I’m going to make a very broad, very direct statement at the start of this post – please just think about it before you continue on to the rest.

Just because I am not talking about being in pain does not mean I am not in pain.

With me so far? Good.

There seems to be a bit of a double standard here: if you talk about being in pain or feeling ill, then you’re moaning and seeking attention. I’m sure we’ve all been guilty of assuming this on occasion regardless of the subject involved, but it’s an attitude I find consistently across the wide world of the internet.

However, if you don’t talk about it very often or at all, there must be nothing wrong. If there was then you’d be talking about it. Then you’d be moaning and seeking attention…. I’m sure nobody needs me to point out the circle of false assumption involved here.

I’ve been thinking about where I sit in this circle and maybe it would be helpful to explain not only where I am but why I’m there. I’m entirely certain of my reasons but that doesn’t mean anyone else is, because I’ve just read back a way and despite this being a blog about chronic pain conditions I don’t actually illuminate on it all that much, and when I do I’m fairly vague or playing it for laughs.

I’ll start with the more selfish reasons. Most importantly to start with is the cold fact of the matter, which is that I am in fact in pain all the time. It’s obviously not always at incapacitating levels, but some measure of it is a constant, irritable companion.

(Maybe we should all come with appropriate signage? Image from

What I try to do is force it to the back of my mind and not concentrate on it – essentially pulling the smoke and mirrors on my brain and trying to convince it that no, it’s not actually that all encompassing. If I talk about it then obviously I begin to think about it and my concentration is very quickly invaded by awareness of every single joint and muscle which feels like voicing a grievance, let alone all the peripheral problems I’d rather not spend thought on. It might not be helpful to anyone else and especially to people who actually do need to know, but for pure self preservation and maintenance of the whopper of a fib I’m continually telling my own mind it’s far easier for me to just not talk about it.

The second somewhat selfish reason is that I just don’t enjoy talking about it. In all honesty this is more down to aspects of my personality than anything else. If I’m asked about it or begin to explain, I’m immediately put on the spot and that’s not a situation I’m comfortable in no matter what the topic at hand.

Despite being quite talkative and usually having something intelligent to say in a group situation I’m usually the type to do more listening than speaking.  I don’t hold court and I don’t enjoy being the centre of attention. As chronic illness isn’t an every day occurrence for many I usually end up being the only person speaking – cue one part coherency to three parts “Er...” and squirming. Clearly I am never going to forge a career as a public speaker.

You only have to see me when faced with being approached by a stranger at a bar or a similar scenario to know this is all the truth – rabbit caught in the headlights does not come remotely close.

There are of course certain people I’m entirely comfortable with talking to – they’re the ones I don’t say “I’m fine” to when I’m not, but for the most part I’m just more comfortable that way.

Finally, there is a reason that’s far more altruistic. Whilst everyone will at some point need to vent about whatever it is that is bothering them and may need to do so more than once or regularly, it’s not an enjoyable thing to listen to times many. I’m quite acutely aware that some people ask how you are and only want the answer if it’s positive. Personally I think “Well why ask then?” but I do accept some people are just like that. They like everything to be sunshine and rainbows 24/7 and your clouds of less-than-stellar feelings aren’t welcome on their horizon.

The point for those like me who are suffering something incurable is that it’s never going to not form a part of the honest answer to the question of how you’re doing. It’s not going to disappear one day to the next, and the fairies aren’t going to come and magic it away. It’s here for good. Aside from those few I mentioned previously who I’m comfortable talking honestly with, I’m aware and understanding of the fact that constant ill health is a burden not everyone wants to share in, and that’s quite all right.

It all comes back to the invisibility problem once again – anything which can’t be seen is open to doubt and suspicion. It can be worth bearing in mind though that just because someone isn’t discussing something regularly or answers “I’m fine” more often than not when asked, it doesn’t mean their condition or problem is fictional.

(I don't swear much, so if I am swearing you are more than welcome to assume I'm in pain. Or that the cat's stolen dinner again, whichever seems most appropriate. Image from

They may just not feel like talking about it at that given point in time. They may even just be sparing you from the details and it’s wise not to look a gift horse in the mouth – particularly if you’re the type who would then complain about moaning if they didn’t spare you.

My final point makes this idea personal once more. Fibromyalgia and Interstitial Cystitis are the particular problems my body copes with, and they are both personal and an entirely unique individual experience. That makes them mine – my news (good or bad), my problem and my prerogative if I want to share it or not.

I do not exist to oblige your curiosity, and I’m not being rude if I choose not to. That does not mean I’m necessarily telling the truth if I say “I’m fine”, but I ask only that people respect my wishes and bear in mind the reasons why I (or anyone else) may wish to give that response.

Wishing you all many spoons xx

Saturday, 23 November 2013

"And now the page before us blurs..."

I was asked several days ago to try and quantify why above all the other fantasy literature I get excited about The Malazan Book of the Fallen by Steven Erikson is so special to me. As it is all very much bound up in the story of my diagnosis I thought where better to do so than here, on the blog the books inspired the naming of? I’m also currently reading through the companion Novels of the Malazan Empire by Ian Cameron Esslemont, the co-creator with Erikson of the world in which both series take place so this seems as good a time as any to write the post.

The first thing to say is that “special” does not begin to even scratch the surface. Bearing in mind I’m the girl who grew up with her nose in Tolkien and is still hugely in love with it, for me to say something beats it is a big thing. I want you to understand just how high the praise is when I say Malazan is utterly unparalleled. I’m wholly confident I’ll never find anything else like it. Although I consider it superbly well written the standard of the writing isn’t really what lifts it above all others. It’s not even really the fact that it sets about wonderfully deconstructing and running against the grain of the standard fantasy tropes which have become the dwelling place of so many mediocre series in the last two decades or so. About time too.

It’s the themes and the characters and the raw and unbridled emotion, coupled with the fact that when I finally sat down with Gardens of the Moon for the first time, I was mere weeks away from the first burgeoning of illness. By the time I read the second book Deadhouse Gates, I’d been in hospital for the first time. Timing as they say is often everything.

I was unsure about the first book, truth be told. It captured my interest just enough to continue onward, and from about half way through book two I was hooked for good. As time went on I was always reading one of the series each time I went to hospital, including my somewhat disastrous colonoscopy procedure in which I spent my two days of recovery buried in book nine, Dust of Dreams. Without me realising at the time it became the world I immersed myself in whenever I was at a loss for how to deal with my own. All that rage of emotion was in some ways cathartic because (stubborn creature that I am) I wasn't allowing myself a proper release in terms of my own situation. I just kept gritting my teeth and telling myself it would be fine when in reality all I needed was to kick and scream a bit and shed a few tears.

Possibly just as important was the further I went into the series the more I started to sense a sort of kindred spirit within it. Here was evidence on a page (lots of them in fact) that someone looked at the world the same way I did. I kept recognising things I’ve thought and near enough said in the past, ideas incredibly similar to my own about people and how they interact in various situations. Here was contempt for the same things of which I am contemptuous, and here was unbridled celebration of things I found joy in.

More than anything else, someone else wasn't ashamed or frightened of the power of emotion and passion.

I’m a very sensitive and highly emotional individual. There, I said it. Laugh all you like, because frankly I pity those who are coldly cynical and sneering of any genuine emotion because they’re mistaken in believing it’s the “adult” way to think. When I was younger it was something which worried me – constantly mocked and branded as “soft” I did begin to wonder if there was something wrong. Thankfully I can say that now it’s something I completely embrace. I've never understood why emotion is seen as something to be ashamed of - it's a part of passion, and what could be more liberating or more beautiful than that?

So, I cry at films and books. Particularly books.

(Heh, painfully true. Image from

Honestly? The people who claim to never feel anything from any form of art and hide behind cynicism are the people I feel sorry for, because they’re missing out on something very special. There's nothing wrong with them (the world would be boring if we were all the same), but I do feel that having an emotional connection to whatever medium you're partaking in opens up a different experience. 

Erikson puts it better than me:

“There are forces in history that rise and fall, and the factors contributing to both are complex and varied to be sure. Others have made the observation that escapist literature thrives most when reality sucks. As for the proliferation of nihilist fiction, I would think that is but a lazy extension of what we have seen a lot of in film and television (the psychopathic, jaded, non-reactive hero who kills and kills and kills and doesn’t give a fuck beyond the memorable tag-line concluding the mayhem—yippee kay-ay). So, there on the screen, all the cool dudes with the craggy faces and the fawning women hanging off one arm. Nothing phases them. They sleep well at night (after the perfect sex with the perfect woman), and get up the next day, gun in hand, to do it all over again. Cynicism is cool, didn’t you know? It’s the mature way to be.
Fuck all that.
Well, see what happens when you get me started on this?”, August 2012.

So, having reached the end of the series (and wept solidly for the last thirty pages or so, because it is so heart-breakingly beautiful) I acted on a seemingly out of nowhere impulse and wrote a letter to Mr Erikson. Essentially, I said thank you. The thought occurred to me that if I’d written something that touched someone's life quite so profoundly then I think I’d want to be told. I didn't write in any expectation of a reply*, just a genuine desire to thank someone for having done something unique for me. I said in my letter that as I had opened the books on becoming ill, I’d hope to close them one day with a diagnosis.

As far too neat and precise as it sounds, I was re-reading Deadhouse Gates when my GP finally diagnosed me with Fibromyalgia. The poignancy wasn't lost on me.

It’s hard to explain why the books have become so tangled up in my head with that time period aside from coincidence, and even less easy to opine on why they’re as close to my heart as they are, but I watched the speeches from the premiere of Harry Potter and the Deathly Hallows Part 2 recently and J.K. Rowling said something quite pertinent in this regard. “The stories we love best live in us forever.”

Long live The Malazan Book of the Fallen.

And now the page before us blurs.
An age is done. The book must close.
We are abandoned to history.
Raise high one more time the tattered standard
Of the Fallen. See through the drifting smoke
To the dark stains upon the fabric.
This is the blood of our lives, this is the
Payment of our deeds, all soon to be
We were never what people could be.
We were only what we were.

Remember us.”

Untitled – The Crippled God, Steven Erikson

So there you have it, though not an entirely successful attempt to demystify my attachment to the series, I hope it explained a little bit. I'm not trying to convince you to go and read the books - you can make that decision for yourself. I don't expect anyone to come back to me and say "I totally agree with everything you said" either, because that's part of the beauty of literature and all other forms of art. You take from it what you wish, and I always enjoy hearing other interpretations of something I enjoy.

Do I need to get out more? Probably, but I'm quite happy as I am!

Wishing you all many spoons xx

*To my surprise, I received one.

Wednesday, 20 November 2013

Find the Real

"Shouldn't you at least be wearing makeup or something? I mean if you look that ill you could at least attempt to cover it up."

(Almost accurate for the physical reaction I was tempted to give. Image from

I wish I’d made that up, but it is in fact what I was greeted with at work. Beyond the fact it’s an exceptionally rude comment to make it raises a couple of potentially interesting points of discussion.

The first is very general, and that is that frankly it sickens me how much emphasis is put on appearance, and why it’s something that everyone and their aunt feel entitled to comment on. I recognise that the fact I don’t wear makeup most of the time puts me in the minority, but the decision belongs with me. I have better things to do first thing in the morning when I get up (optional reading: I’m too lazy) and I can only imagine the state my skin would work itself into if I used makeup every day.

Most importantly though I just don’t feel the need to do so. Within my job I meet clients and visitors on occasion, but as long as I’m smartly dressed and the mane is tamed (frankly it’s something of a spectacle in itself when it isn’t) then I consider that I’m fulfilling my role correctly in a professional environment. I work in a law firm and not a fashion house, so I don’t believe for a second that clients form their impression of a law firm’s competency and professionalism on how much or how little makeup the female members of staff wear.

For most other occasions, makeup in my head is just part of the ritual of getting dressed up to go out somewhere be it gig, restaurant, club night or anything else. I have the odd day at a weekend where I wake up and feel like wearing some, but mostly it’s just not something I’m overly interested in.

However, I wouldn’t for a moment look down on people who do wear makeup to work, to pop round the corner to the shops or indeed anything else. If they want to, that’s their decision, and despite the fact I don’t use it often I do have an appreciation for just how much skill and artistry can be involved. The point about a “natural” look is an amusing one for me, because it takes a lot of hard work to create the illusion of wearing no makeup when you are in fact doing so. I’m frankly in awe of people’s skills because I’m well aware mine are just a little shabby.

For example my infrequent attempts at mascara usually go rather like this: poke myself in both eyes several times, end up with more mascara on my face than I do my eyelashes, despair at the clumpy mess I’ve created and then essentially just give up.

If I somehow manage to avoid that then the shock uses up most of the spoons I was planning on using to go out in the first place!

One of the tiresome attempts I’ve often heard to bolster the sort of looking down the nose that goes on in terms of makeup is the excuse of “They’re just wearing makeup because they’re too insecure about how they look without it!”

Some people do indeed do that. Others don’t. I’d really love someone to meet the challenge one day of explaining to me what effect they think this has on the type of person someone is, or what it has to do with the way they behave towards others.

More importantly I’d love them to explain why exactly it is anyone else’s damned business.

Makeup is just another part of self expression, and everyone’s right to dress and look how they want to in order to express themselves ought to be defended whether it’s something you personally like or agree with or not. Next time you want to complain about what someone wears, think about this: are they making you wear the same thing? The likelihood is no, so leave them be.

Albinwonderland being brilliant once again.)

The second point is more specific – what kind of selfish and blinkered individual expects that anything they are uncomfortable with should be removed from their sight, allowing their rosy little existence to remain unblemished by its corrupting presence? In the 21st century are we really back to “we’re scared of what we don’t understand”?

Nobody, regardless of whether their illness is temporary, chronic, incurable or even fatal is obliged to hide it for anyone’s comfort but their own if that is what they choose. Injury, illness, ageing and any number of other appearance-altering realities are a part of life. For illness of a more long term nature it’s also a part of your person.

Would you ask someone to hide their sexuality, their interests or their heritage just because you were too narrow minded to be comfortable with its expression? Why is poor health any different? If it’s a part of your life then why should you be expected to feel ashamed of it?

It’s the same argument used by many that “fat people should cover up”. No, they shouldn’t, not unless they want to. They’re as entitled to express themselves through fashion choices, makeup and aesthetics as anybody else. They don’t look “ridiculous” or “stupid” or “horrible” or any other negative usually carelessly thrown around, they’re just outside of the teeny tiny box of what you consider to be the parameters of beauty, and woe betide anyone who disagrees with you.  

What happened to the attitude of “Not for me, but each to their own”? If you’re too immature to accept the choices of others which fall outside what you personally find attractive or comfortable then I truly do pity you.

Why? One day you’re likely to be ill yourself. Hopefully it will be transient and of short duration. It might affect your weight in one way or another, or give you uneven skin or swollen joints or a bloated abdomen. If people then make those sorts of comments to you, asking why you haven’t attempted to mask the problem because they find it unsightly, you’re feelings will understandably be hurt. Maybe, just maybe it will teach you a lesson. 

On something of an amusing tangent, I didn't actually look ill today. I do have flare ups that are quite visible – if they last more than a day or so I start to look a little sunken around the eyes and washed out. Today however I was my completely normal exceptionally pale self.

According to a friend of mine my ghostly complexion is going to be the death of cameras one day, given it took him about six tries to take the photo below. The point is as long as you’re human and not a camera then the likelihood is my rather British pallor is not going to be that dangerous.

(I’m not convinced I believe you Shane.)

No person on this planet exists to be molded around any other individual’s comfort and convenience, so none of them deserve to be shamed when they don’t fit the narrow boundaries of the perfect little world some people live in.

I’m pleased I don’t have to live there with them.

Wishing you all many spoons xxx

Thursday, 14 November 2013


I’ve said numerous times on TRB that the blog has not only been cathartic and a chance to explore what I’m thinking, but more importantly it has been a vehicle allowing me to challenge those thoughts and habits of mind. What could be more challenging than to think of reasons to say “thank you” to my tempestuous lodger?

When suddenly faced with something all-consuming and unexpected like an incurable health condition, people mostly split into one of two camps with their behaviour – they either succumb to despair, guilt and feelings of betrayal and indeed risk becoming consumed, or they grit their teeth, shake their fists and say “sod you”.

Sometimes people do both, one after the other, which is what I did. I then repeated the process a year later after receiving a diagnosis, because once the joy of assurance that things aren’t all in your head wears off you then come face to face with “I have what? What do you mean you can’t make it stop?”

There’s a saying that for every door which shuts in your life due to circumstances, another will open. I don’t see affliction with chronic ill health to fall outside of that observation; it’s just admittedly harder to see how it fits, particularly at first when you’re still trying to figure out how exhaustion, pain and cognitive dysfunction can be made to fit into normal human function. “Square pegs in round holes” makes a pleasing metaphor for this.

I found that life was very organically brought into sharper focus. Suddenly I could see an array of things which had occupied my mind or caused me to fret and worry which were wholly inconsequential. They might have felt less than trivial at the time, but faced with something far more important to be dealt with on a daily basis you soon learn what is and isn’t worth getting angry or upset about. I am by nature very sensitive, but even so I’ve begun slowly to temper that with a sense of “Is this worth possibly having a flare up?”

(Sometimes even I have to laugh at how British I am. Image from

One such triviality was the insecurity I carried over physical appearance. I always felt it was trivial, that there were far more important qualities to not only me but every other individual, but for one reason and another I could never quite make that philosophy stick in the face of the voice in my head who liked reminding me of all the possible (and probably a few imaginary) flaws.

I was an awfully unattractive teenager, and I’m not just being self-deprecating with that either. I had masses of frizzy hair, bug-eyed spectacles, a reasonably pronounced overbite followed by braces and neither a clue about nor any interest at all in fashion, makeup and such things. By around 21 I’d discovered layering, shed the braces and stumbled upon the wonderful inventions of thinned lenses and contacts so I looked far less like a buck-toothed electrocuted insect and a bit more like a human being.

I then fell in with what turned out to be a toxic group of people (toxic for me, at least) whose whole group dynamic and chief concern lay in one’s looks. You were either flavour of the month and hovering above the virtual cesspit of insecurity, jealousy and cattiness below or you were deemed unworthy, based on nothing more than your own physical appearance and whether you were prepared to do homage to the current favourite.

Thanks all the same, but no. All of that (I can see now in hindsight, perfect 20:20 as ever) seemed to grind any progress I might have made towards accepting the triviality of my worries to a deathly halt.

So my first reason for gratitude is that with Petunia to cope with and work around, I neither had the time or the energy to care about something so frankly unimportant in the grand scheme of things.

I still have days where I feel like something Misty threw up on the carpet, and whatever may be muttered about vanity and shallowness I still enjoy dressing up to go out. I don’t use makeup on a day to day basis so it has become reserved to a part of the routine of getting dolled up to do something special. I’ve recently been investigating buying a foundation for the first time because Miss P seems determined to make me look more and more like a Uakari monkey when she’s acting the goat, but it will be something I keep for sparing use just to give me a bit of a boost of confidence if I am going out.

(Blog post may contain liberal doses of sarcasm and exaggeration. Image from

The exercise routine has really helped with this too. Whilst a lot of people’s chief concern is how much they weigh and focus on the need to shift pounds to achieve a slimmer shape, I’m far more interested in what the exercise and a healthy diet are allowing my body to achieve. I’ll be discussing the effects of the dance workout I started in an upcoming post, but what I’m enjoying more than any visible shape change is the increase of flexibility, strength and fullness of movement in joints and muscles which have been stiff, weak and sore for some time. They’re still stiff, weak and sore a lot of the time but the difference is phenomenal.

For example having full movement in my hips after years of limitation is a great deal more interesting than how wide they are, and being able to make use of my core in a new and more effective way is far more important than what a measuring tape says about my waist. I can’t do anything about the skin reaction and wouldn't want to use makeup to cover it up every day, but in a way it’s evidence that my body’s still trying its best and I can make peace with that.

What my body looks like is never, ever again going to take centre stage in the face of what it is physically capable of and the work I can put in to improve this and to help it deal with my damaged immune system.

So Petunia? You came, you saw, but instead of wholly conquering you helped out a bit too.

Thanks. As you’re sticking around, shall we see what else we can do?

I plan to make this post the beginning of a series, as I’m slowly finding new ways to look at my situation. Can you relate to this, and do you have any gratitude of your own for the way your life has changed? I’d love to hear it.

Wishing you many spoons xxx

Sunday, 10 November 2013

The thin skull rule

One of the things in life which is most likely to push my buttons instantaneously is the subject of bullying. It upsets me to see it, and excuses made for it upset me even more. I don't think it's anything to do with the usual bullied-at-school background either; I'm the sort of person who (for better or worse) has very hard lines set about right and wrong - and bullying is always wrong.

A situation a couple of years back came up in conversation twice recently and prompted me to flesh it out into a post. It also touches on themes addressed in Divided we Fall, of those who consider they have the right to judge who does or doesn't have any particular condition.

The situation revolved around a group of people picking on one individual. There had been some run up to the incident but it escalated beyond all sane proportions and became downright nasty. It never ceases to amaze me how "brave" people can suddenly be safely behind a modem and keyboard with ten others backing their view up.

The point most relevant to the post however is that when the individual was revealed to have a particular mental and behavioural disorder, it was unanimously decided on the spot that this was a "convenient excuse" and therefore couldn't be true and the bullying not only continued but intensified.

The phenomenon of cyber bullying achieved national attention in the UK when it formed part of the campaign for 2013's Red Nose Day. The subject highlighted in particular was those who tragically take their own lives as a result of relentless bullying. Simon's story was bravely reiterated by his family as a part of the awareness campaign, but the picture board of young people who came to the same last resort at the end of the video is probably the most horrifying part of all.

What links the two was the oft-seen aftermath when people discover less then palatable details later on and use the excuse "Oh, but I didn't know!" to attempt to justify their words or actions.

Some may think this harsh but I'm going to take this opportunity to cut right through the rubbish of that phrase. What they mean by "I didn't know" is "I didn't think about what I was saying because I didn't care what the other person might have felt in response".

How exceedingly unimpressive.

(A moment's light relief - let's play "Can you see it yet?" - image from

Mental illness and behavioural disorders share the common problem of all invisible illnesses - they cannot be seen. You cannot know by looking at an individual whether their diagnosis is correct, incorrect or a complete fabrication. It is also impossible to tell purely from what a person says or (perhaps more pertinently in this context) what they write.

I'm not discounting the scenario that behavioural disorders of all shapes and sizes are used as an excuse for what is just plain bad behaviour, however I don't believe that knowledge of that potential inaccuracy should equate to automatic assumptions across the board.

Unless you are that individual's treating doctor or specialist you are not imbued with any right whatsoever to judge their physical or mental health. Even if you have the same condition, you are not the automatic authority. There is no such thing as illness royalty and no health government - there is no individual or body of individuals who own the authority to judge others by their own convenience or expectations. I know we've all been guilty of this at some point, but that fact doesn't render the truth any less real.

You're still wondering about that title, aren't you?

(The beautiful Royal Courts of Justice, London UK)

In the criminal law of England and Wales, the thin or eggshell skull rule exists. The rule holds that a person who engages in any activity which causes another individual harm is liable for all the harm caused, even if the victim has any pre-existing conditions or vulnerabilities which mean an unusual level of harm is inflicted, including fatality.

A short and hypothetical scenario applying the rule: you hit somebody on the head and they had a peculiarly thin skull and died as a direct consequence of the blow you inflicted. Ignorance of the abnormality would not absolve you of liability for their death. It isn't murder because it lacks "malice aforethought" (premeditation), but criminal liability for the death is nonetheless recognised and would be upheld.

The general maxim? A quote directly from the Lord Justice Lawton in the conclusion of R v Blaue (1975) sums it up perfectly - "You must take the victim as you find them."

You very rarely know enough about another person to be absolutely certain of the whole truth of their circumstances. Until you do, exercise a little decency and don't be the person who stands in the cold afterwards saying "I didn't know".

Wishing you all many spoons xx

Friday, 8 November 2013

Screw your courage to the sticking-place

("Positively primeval." Image from

An aside: the title is part of a speech from Lady Macbeth – it also turns up in Disney’s Beauty and the Beast in the song “Kill the Beast”. There you go, a completely irrelevant fact for you. You can't say I never tell you anything interesting (read "useless").

Courage and bravery are ideas I often see discussed and opined upon in the realm of chronic ill health. A few people have kindly told me they think the writing of this blog is brave, not only in openness about grim details on occasion but also in being willing to tackle difficult subjects, from time to time taking the road less traveled by in terms of approach to them.

It’s a concept I find horrendously awkward.

I don’t see myself as a particularly brave person by nature. I’m just a bit too quiet and mild-mannered for that, and for a practical example no matter what anyone tells me about “facing up to your fears” nothing under the sky would compel me to get close to large spiders. I’m not an unusual individual in character really and in writing this blog I’m not creating the textual equivalent of rolling high fortitude saves against life.   

In discussing this idea recently I countermanded it with the fact that I’m not always open about my health. There are plenty of occasions where I don’t talk about it when I perhaps should, times when I’ll smile and say everything’s fine when I actively want to scream, and rarer occasions where I’m faced with ignorance and I simply don’t have the energy to match it.

There’s problem number one – the idea that to be brave, you have to be the same all the time.

The second issue is the idea many are conditioned towards that bravery manifests in one set way. It’s bold and makes itself heard; it batters down any and all doors closed against the cause it champions. It never, ever pauses or falters.

In this guise therefore it is essentially a somewhat inhuman characteristic.

Within the sphere of chronic illness there are plenty of examples of different forms of bravery. It doesn’t have to be flashy or worthy of recognition and it could be entirely personal and appreciated by an audience of one.

Making it out of bed for the first time in a week after a flare up, facing numerous and sometimes fruitless hospital procedures, speaking about your health to someone new, agreeing to a trial a new medication – they’re all courageous acts in their own way. They might not gain the recognition they deserve for being so, but that makes it no less true.

(Poignant. Image from

The one characteristic of mine that I would allow is possibly a brave one is that I've never very often been afflicted by the need to belong to a group, and so I've always had the ability to stand aside from behaviours or ideas I believe to be morally wrong despite of what anyone might think of me because of this failure to conform. This I think has manifested in a tendency for some posts on this blog to be a little apart from the norm of what a reader would maybe expect from a blog about illness. 

I’m not here to tar all healthy people with the brush of ignorance, and I’m not writing from the position of believing all sufferers of chronic ill health behave impeccably and are always right in what they do and say. That would be an easy enough path to travel down, but it’s not the one for me.

I didn't start the blog because I thought it would be a brave thing to do – I started it because I thought I could help. I wanted to show the reality behind all the romanticised or conversely demonised notions about chronic illness and those who suffer with it. I hoped to show that it was normal to struggle and to have bad days, just as it was normal to have better ones.

In summary then I’m going to offer an unpopular idea about the concept of bravery within the realm of illness, because I don’t believe that the loud and brash archetype of courage is the correct yardstick to apply.

Perhaps courage lies in making peace with the situation; accepting that good days, bad days and everything in between are a part of being human.

Maybe the greatest bravery of all is in accepting that you can’t always win, and that in not winning it’s fine to pull off the Boots of Anti-Ignorance (+5 these days, because +3 wasn't quite enough!), hang up the Helm of Brave Face* and live to fight another day.

*In case you wondered, no, it’s unlikely I’ll run out of Dungeons and Dragons references any time soon. 

Whilst I’m talking about recognition, I’m incredibly honoured to say that The Retired Bridgeburner has been nominated in the WEGO Health Acitivist Awards! Nomination are to my knowledge still open and you can find out about the categories and when voting will begin on the link  here.

Wishing you all many spoons xxx