In Defence of the No Makeup "Selfie"

(Image from breastcancercampaign.org)

If you spend any amount of time engaged with social media, you will have no doubt noticed the rise of the no-makeup “selfie” to raise awareness for breast cancer.

If you spent a second longer, you will probably also have noticed the rise in non-participants moaning about them.

First things first – yes, it’s fine to moan if your newsfeed is full of photos all of a sudden and not whatever it is you are used to seeing there. The odd grump though is a world away from some of the vitriol I’ve seen aimed at the trend.

“Why don’t they donate money instead?” – well, how do you know they aren’t doing so? And given that the campaign so far has helped Cancer Research UK alone raise over £1 million from in excess of 800,000 text donations, I would hazard a guess most people in fact are doing so. Besides which, what business is it of yours how another individual chooses to go about raising awareness of a cause? When last I looked, nobody was attempting to chain you to the bandwagon and drag you bumping and stumbling along behind it.

Cancer (in any form) has touched or will touch us all in some way throughout our lives. Macmillan Cancer Support’s oft-quoted statistic is that one in three of us will be affected by cancer. That doesn’t just mean contracting the disease, but includes the friends and family surrounding us.  The likelihood is therefore that for a lot of the people posting those pictures, cancer is a pretty big deal.

All those questions of “What’s the point?” or the roll of the eyes-inducing “It’s not face cancer so it’s not relevant” sort of comments are in my eyes missing the most important part of awareness – the need for people to talk about the cause.

In broad terms, there’s no difference between posting said photo, moaning about people posting the photos, commenting on how amazing (or mad, depending on viewpoint) people participating in sponsored activities are, or if like me back in January you were in the camp of wondering why Dryathlete was worth sponsoring because if not drinking for a month is really that much of a challenge for you then charitable leanings aren’t going to help you.

The uniting factor of all those scenarios is that no matter your feelings you’re talking about it with others, who may then talk about with further others, and so on and so forth. No matter the method, the end result is the same success. A crucial part of raising awareness is getting people to discuss and engage with the topic at hand.

It’s the same reason people write blogs, join communities, get involved with organisations such as WEGO Health in hosting web chats and Twitter discussions and generally share their experiences with regard to any illness large or small. If you wish to educate people on the topic to achieve better understanding and greater awareness then the first step is the initiation of conversation. Lack of it will only hinder any advances, and silence is the anathema of progress and the bane of understanding.

I’ve seen a few people posting the breast examination poster instead of a photo, stating that “this actually helps cancer awareness” and I’m sure despite the smug tones that this comes from a well meaning place, but it belies a critical lack of understanding of how people engage in social media. If they aren’t interested, then they’ll scroll right on past your informative poster in the same way they will a photo, whatever the caption or explanation you’ve shown alongside it. You may think you’re being more helpful, but in reality you are no more or less likely to promote discussion and raise awareness than the people you’re deriding.

(There you go, me without makeup. I may or may not legally be a ghost.)

It's the same with The Retired Bridgeburner. I could be talking about something absolutely catastrophically world-bending (unlikely, given my last post was about Munchkin) but if you weren't interested you'd have scrolled right past the various places on social media where it can be found without a second thought. It’s the nature of the beast.

Something to remember is that whilst sponsored athletic exploits are phenomenal and certainly worthy of a great deal of respect (and no small amount of awe in some cases), not everyone is capable of completing such feats. Not everyone's health can meet that challenge, and that's no reason for turning one's nose up at smaller efforts. Even things that are relatively effortless are worthy if the intentions come from the right place.

Then of course there’s the darker side of the complaining – I’m sure we’ve all noticed that it has allowed the rather ugly matter of how much or how little makeup women should be wearing to raise its weary head once again. I try to avoid stereotyping as much as possible, but sad to say at least in my experience so far it has been mostly men who are commenting in this way.

I’m going to put this very shortly and simply for the benefit of the prat at the back and all their friends. I’ll try not to use big words because it seems to be a very difficult concept for their very narrow view on life to tolerate.

We are not wearing make up for you. We are not forgoing wearing make up for you. We are not wearing or choosing not to wear makeup for any person other than ourselves.  

When the outside edges of your world view have ceased to shudder, maybe you will consider that by taking the photos as an excuse to assert views on what a woman looks like with or without the accompaniment of makeup (because as women we certainly aren’t tired of the assumption that our appearance is our one and only contribution of note), you’re doing far more damage to the cause of raising awareness about cancer than any of the subjects of the photos are by posting them.

You might not agree with their methods, but they’re doing something, even a very small something to open up conversation. Turning the matter into an excuse to trot out the incredibly tired makeup debate is preventing that conversation from happening.

In conclusion I will offer one thought – if you’re one of the moaners questioning why women aren’t donating to cancer charities instead of posting photos, I direct your question back to you.

Why aren’t you donating instead of moaning?

If you are, then I applaud you. If you’re not, consider that some food for thought.

Still amused by how ghostly I am, and wishing you all many spoons xxx

Munchkin: The Chronic Illness Edition

Something on a light hearted note from me this week. Not only am I a computer gamer but I am more than a little partial to board games also. They’re good fun and an easy way to be sociable when you perhaps don’t have the energy to out and so something more lively.

Munchkin the card game was created in 2001 and won the Origin Award for Best Traditional Card Game the very same year. The game was based on the 2000 book The Munchkin’s Guide to Powergaming (itself a winner of an Origin Award), a humorous book poking fun at the sort of role players we all know and love – zero tactics and maximum power (over powered desirable but not essential).

The game  is something I would recommend if you like that sort of thing – it’s Dungeons and Dragons with cards and a liberal dose of zany humour and silliness added to the mix. I mean who doesn’t want to rogue back-stab their friends of an evening occasionally?

So with no more ado, here’s the chronic illness edition of a game of Munchkin!

(Image from worldofmunchkin.com)

Level 1

Knock down the door.

Allergy-inducing Potted Plant – Level 1

Bad stuff: You can’t breathe through your nose for the rest of the game.

Defeated, because it’s a potted plant for goodness’ sake.

Level 2

Knock down the door.

Medical student – Level 3

Bad stuff: He doesn’t read your notes properly and is generally a waste of time. -2 penalty to everyone.

Receive help from another player to leave the room before you punch him in the face.

Level 3

Knock down the door.

Cleric of the Miracle Cure – Level 6

Bad stuff: She steals all your treasures in return for said cure (which doesn’t work).

You fell for it, you nitwit. Luckily once she has all your treasure she doesn’t care about you anymore. +4 to run away.

Level 4

Knock down the door.

Symptom The GM Made Up – Level 8

Bad stuff: +4 against Wizards – the symptom is not in your books and maps. It’s out there, and it’s confusing your doctor.

Receive help from another player (or press X) to not die. Actually this might not be death, but it feels like it.

Level 5

Knock down the door.

3,872 Pressure Points – Level 14

Bad stuff: -3 to run away, because you can’t move.

A narrow victory with the help of your trusty steed and a Swiss Army Wheat Bag.

Level 6

Knock down the door.

The Dish – Level 10

Bad stuff: It ran away with the spoon(s). Lose your hireling who was carrying them all for you.

You are now one helper down and significantly light on spoons. Some sort of nap might be in order.

Level 7

Knock down the door.

Sneaky Onions You Weren’t Told Were In Your Food – Level 15

Bad stuff: Let’s not be indelicate….

Defeated with the help of Druid Fluid – easing digestive indelicacies since 2001

Level 8

Knock down the door.

Curse!

Drunk!

(Well sort of. It’s actually a medication reaction, so it’s “drunk” without the fun part preceding it.)

Bad stuff: Lose your class (you can’t really remember what your house keys are for, let alone anything class-specific) and lose your race (you’re struggling to remember your own name at this point….)

Level 9

Knock down the door.

Plutonium Flare-up - Level 20

Bad stuff: Everything! An added +4 bonus against everyone but elves, and -2 against elves, because elves don’t get sick (the smug gits).

Receive help from a friend (we all need that occasionally).

Level 10 and victory! You are the bravest Spoony Munchkin!

Well, if you’re familiar with Munchkin I hope you enjoyed that, and if you’re now scratching your head wondering if I’ve succumbed to that drunk curse after all, Munchkin is a reasonably inexpensive way to have fun with a bunch of friends in the comfort of your own home with minimal energy expenditure - unless you count the spoons you’ll need to throw things at your friends when they hit you with a Level 20 Wandering Monster.

Still chasing down The Dish and wishing you all many spoons xxx

King of Fools

We are never gonna be like you,
We don't follow - King of fools,
You are the blind who lead the blind.
You are the King of Fools.

Edguy - King of Fools

Diet and exercise – the two things most likely to irritate me as suggestions for how to make Petunia behave. Simple, obvious and perpetually ineffective.

The problem for me is two-fold. The assumption that everything that is wrong with a person’s health can be fixed with a mixture of the two is both tiresome and in some ways quite rude – there’s an unspoken assumption there that the person is too stupid to have thought of those things themselves and therefore is wholly responsible for their own problems. That also bolsters uninformed opinions regarding patients “attention seeking” and that they just refuse to attempt to get better and are in fact happy being ill.

Yes, we thoroughly enjoy it, and personally if Petunia were tangible I’d marry her, I love her that much.

(My lollygagging is becoming a real issue. Image from Tumblr, source unknown.)

(If I ever say that to you I suggest you duck, because eventually it’s likely that it’ll be swiftly followed up by something being thrown.)

So, I ask of all the pseudo-experts out there, what should I do when having a clean, healthy diet and doing regular exercise don’t work and in fact causes as many problems as they solve?

I eat pretty plainly in order to try and calm my insides down. Most of the time I aim for a good balance of protein and vegetables and a reduction in carbohydrates in a meal – I don’t cut out altogether, but I do cut down. I don’t drink because of the dual reasons of medication interaction and the fact the Interstitial Cystitis side of Petunia’s personality would no doubt explode if I did. I drink plenty of water (too much at times) and I don’t drink caffeine during the day. I don’t snack much except for fruit and mostly keep sweet things for weekends only. In essence I am pretty damn well behaved on the diet front.

I also exercise as much as I’m able. Due to my recent dip that hasn’t been as much as I’d like but it is slowly coming back and I hope to over time work up to the point where I’m working out three or four times a week again. This doesn’t include general walking about such as walking to work. I’ve just purchased a couple of Jillian Michaels’ more cardio-driven exercise DVDs to give myself a bit of a change and I’m hoping in a few months I’ll be back to being able to take this amount of exercise regularly once more. This will obviously be made easier as we move into Spring and things start to warm up too.

The second problem however is that this has become habit forming. There’s nothing wrong with that in itself, except that I’m a little concerned just how much worse I feel when I need to have an evening off. I’ve spoken about giving myself the evening off as a gift so I don’t feel like I’m just being lazy, and this is mostly effective. However it doesn’t change the fact that I physically feel sluggish and lethargic whenever I’m too tired or sore to exercise, and I don’t have an unrealistic idea that one day I will banish this problem. I have Fibromyalgia – I’m never going to be able to keep the routine all the time.

I wrote a post some time back about what I considered to be the negative and dangerous aspects of the “fitspo” fad – a wealth of articles, memes, diet and exercise plans constantly telling you that if you aren’t following exactly, you’re weak, lazy, fat and an altogether useless sack of flesh.

The thing is just avoiding fitspo related websites doesn’t keep you away from this sort of attitude. It's more than a little disturbing how quickly I’ve started to feel lousy in myself when I can’t complete my exercises as planned.

(Whilst I realise it's not all bad, I am predominantly very anti-fitspo, because as illustrated it can be sodding dangerous. Image from pinterest.com)

There is something very insidious about being at the top of a slippery slope where your self-worth becomes completely tied into your diet and how much exercise you do. Constantly being told it is the way forward (even when you know it isn’t) will wear anyone down eventually, and it’s surprisingly easy to start to question yourself when faced with a relentless onslaught of pseudo-expertise.

Sometimes, it does just feel like far too much effort to keep explaining yourself and once you reach that point you start to wonder if it’s too much effort to explain because you are in fact incorrect. The pseudo-experts start to sound like they possibly make sense.

The slippery slope I just mentioned, do you know what is possibly waiting at the bottom of there? At the point when the apparent army of inherently arrogant “experts” and their unasked for opinions have won their battle with their victim's self worth?

A variety of different mental illnesses, self esteem problems and anxieties which tear people's lives apart.

I repeat myself a lot on this blog in terms of the topic of "think before you speak", but it really can be of vital importance. If even one person takes that thought away from this blog, then I'll feel like I've achieved something. A few would be lovely, and lots would be phenomenal. In a generation of trolling and keyboard warriors where people seem to feel that their opinion is the only important and worthy part of any discusion, it's a lesson that only becomes more necessary. The art of civilised discussion has seemingly long since disappeared into myth for most.

There are very few scenarios where you "have" to say something, so when you've ruled out necessity consider this:

Just because you can say it doesn't mean you should.

Wishing you all many spoons xxx

State of Siege

(Granted, perhaps not your traditional siege. Good old Heroes III.

Image from forum.blockland.us )

Something I’ve been saying right from the word go from this blog is that illness is not a competition (and this indeed applies to most things in life actually) and that everyone’s experiences are equally valid and important.

In other words, I’ve stood staunchly by the mantra of “There is no such thing as not ill enough.” I still stand there in fact.

Given this I was a little surprised to find recently that I’ve been questioning myself along the same lines without actually realising it.

I think the surfacing of such thoughts coincided with the blog’s first birthday, and came hand in hand with feelings that maybe I should be quiet, that my experience wasn’t really that typical of other sufferers of Fibromyalgia (and particularly not Interstitial Cystitis which I have a fairly mild case of) and that given that maybe they weren’t actually all that helpful.

I say with something of a raised eyebrow that I think I’ve possibly been tricked by how well I was over our long spring and summer last year. Between the patches of fatigue and aching it was easy to forget that my conditions existed because my immune system seems to respond rather joyously to dry heat and plenty of it. I even had short periods where I felt almost completely “normal” again. Despite the fact it’s now winter and I’m suffering again I think the build up of so many “better” days led me into something of a false sense of “do I actually belong anymore?”

The reality is that I have a full time job, I have hobbies I can still enjoy and I still have a social life. All those things do become messy as a result of Petunia’s moods but the fact remains that I’m holding down all of them despite being ill. I am in a lot of ways very lucky that I can still engage in a lot of things I love.

Last week was probably proof that Petunia’s ears have been burning, because the combination of a dose change in the amitriptyline medication and some bad family news (when Helen Mirren said in Calendar Girls that cancer was “a shitty, cheating, sly, conniving bloody disease” she was right on the money) meant she recently had something of a party. For Petunia, it was Christmas.

To cut a long and somewhat grim story short, I found myself once more surgically attached to three things – my sofa, my blanket and my wheat bag. A fourth unwanted attachment was to the cat, who doesn’t understand that I’m on the sofa because I can’t really get up and thinks jumping on my stomach every time I’ve almost dozed off is a good idea.

(The fact is that when you're this cute you'll get away with anything and everything.)

Sometimes I do wonder if she and Petunia talk.

So, my body continues to reprimand me for my foolishness. As with most times I have a dip, being out of the dip doesn’t mean an automatic return to normal. The restriction in how much I can exercise or indeed just walk about is becoming maddening and doesn’t seem to be changing quickly at all. I am reminded once again of what winter means for my body, something it was easy to forget and trivialise over the long summer.

I did manage to get out last weekend when I returned home and visit The Chestnut Centre, an otter and owl sanctuary near Chapel-en-le-Frith in the heart of the Peak District. It’s a lovely little place with a herd of Fallow and Sika deer, several different types of otter (including the wonderful Giant Otters) and many different types of owl. Otters are one of my favourite animals because they seem perpetually happy – unless they are sleeping, they are seemingly always at play, and it’s hard not to find their good cheer infectious.

I suppose the moral of this story is that not only should you never trivialise anyone else’s health or problems, but that you should also extend yourself that same courtesy. Illness will never be a competition, and all experiences are valid. My difficulties might not be anything like the same as Fibro sufferers who are disabled and unable to leave the house, but they are still there and just as legitimate. In the end negative thoughts and self doubt do nothing except exacerbate the problems by interfering with your thought process in how to deal with them.

When you live constantly in a state of siege with your own body and immune system, don’t give the other side any more ammunition.

Does anybody else ever feel a bit like this? What do you do to pick yourself up?

Wishing you all many spoons xxx