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

"Words and ideas can change the world..."

... and it can be in very interesting and un-looked for ways when dealing with dysphasia.

(I promise not to spend this post whacking you all over the head with quotes from my favourite film. Just the title, she said. That'll fool 'em, she said. Image from christine-settembrino.tumblr.com)

Now what’s dysphasia, you ask? It’s a partial difficulty in communication ranging from the very mild to the serious (the most severe form is called aphasia) and both phenomenon are most commonly associated with brain injuries. However dysphasia is also frequently seen as an aspect of the cognitive dysfunction associated with Fibromyalgia, M.E and other chronic conditions. It can manifest in several ways which include mixing up words, inability to think of the correct word needed no matter how simple and difficulties in reading and writing, particularly the misspelling of often simple words.

Dysphasia is probably the symptom I have the greatest trouble in accepting. It has in the past (and probably will again in the future) frustrated me to the point of tears. I’m sure I’m accurate in saying it’s a trial for anyone, but to give some background that’s personal to me and my situation, in my last year of primary school I sat several GCSE level English papers passing all with the equivalent of Cs and Bs. I was strong all round in academic terms, but for whatever reason I had a particular affinity for English language and literature. It came almost as naturally as breathing and with as little effort, and I continued with English literature in particular all the way up to A Level.

In short, words to me are a thing of beauty. They’re timeless and can evoke every part of the spectrum of human emotion when used with skill. If we are as is often said a race of storytellers, then the written word gave us the scope for our stories to live on beyond the humble beginnings of the oral tradition. They are, as one of the most successful storytellers of our time once wrote, our most inexhaustible source of magic.

To be so effortlessly strong with something so beautiful and to have that talent grind to a halt beyond my control? It’s beyond frustrating; it’s maddening.

Prior to contracting Fibromyalgia I hadn’t mixed up their, there and they’re since I was six, and yet now I do so semi regularly. I mix up words in the flow of a sentence when I’m speaking; usually substituting the correct word for a word that vaguely rhymes without my immediate noticing. It tends to occur to me with a delay of a few minutes that I didn’t in fact say what I meant. I also struggle for the simplest of words at times – I can be looking at whatever it is and the word just won’t come to me. The more I notice, the more frustrated I get and seemingly the more pronounced the problem becomes.

Sometimes it’s quite amusing. Recently a friend and I were discussing the best Arthurian adaptions on film - the correct answer is Sam Neill’s Merlin for the record, unless your alternative suggestion is Monty Python and the Holy Grail – and I bemoaned Colin Firth’s performance in 2004’s King Arthur. I was picturing Clive Owen, and had no doubt that it was Clive Owen who lumbered about ineffectually and in fact just played Clive Owen, but my brain was having none of it. Mr Firth, I’m sorry to tar you so horribly.

This sounds like an easy enough mistake to make for anyone, but when it’s part of a regular pattern you have to look beyond the possibilities that you’re maybe a bit groggy or not entirely with it on this particular morning. Enter a demonstration of our friend dysphasia.

(Image from www.aphasia.org)

How do I write this blog then? With some difficulty. Some days the struggle for (elephants) eloquence is a particularly challenging one. (Their) There are days when I just give up altogether, jot down whatever the idea was and hope I remember the gist when I come back later.

One of the biggest frustrations for me in this regard is the fear of (luck) looking silly – mostly because I know I’m a lot more intelligent than Petunia and her mind games let me seem. This probably also spawns from the fact that my biggest personal pet hate is to be talked down to or patronised, and this comes from working in a field mired in academic snobbery. I chose not to go to university, despite getting A Levels which would probably have secured me a place just about anywhere in the country. I know my reasons and given the same set of circumstances would confidently make the same choice again, but that doesn’t stop me (riding) bridling at repeatedly having to justify my (rite) right to the title of a highly intelligent being. 

Whilst I realise that they open some doors which would otherwise be closed, a degree is not the only measure of merit in the smart stakes. If you wanted an example even (moor) more outlandish stereotypically speaking, my Dad is a bricklayer and he regularly beats the winning team of each week’s University Challenge on points, because his (breath) breadth of general knowledge (despite the lack of a university education) is almost freakish*. If you ever wanted to know where my thirst to read and find out absolutely everything came from, look no further. The smug git.    

I’m sure you’ve realised that I’m playing this for laughs to some extent, and that it’s only the best attempt at a representation on screen I can give of dysphasia. It’s not actually anywhere near the mark in terms of what it actually feels like to deal with. At its worst writing this blog can be like trying to concentrate through six inches of concrete whilst riding a hedgehog and wearing oven gloves - and the hedgehog only responds to commands in Black Speech.

Despite the humour, for the reasons I’ve talked through thus far the reality can be nothing short of heartbreaking. It sounds like an insignificant thing, but so much of me is bound up in my love of language and of reading and creating with words that at the darkest moments it feels like I’m missing an inextricable part of my person.

I’m getting better over time, but for a long while I became quite withdrawn in all but the closest company for fear of whatever idiocy I’d accidentally conjure up. I read, re-read, proof-read and standing-on-my-head read everything that I write but to little avail – yet another aspect is that I can’t always see the error in written form. I’ll be aware that I thought the wrong word, but I can’t always spot that I’ve typed it – rather like those chain emails where the first and last letters of each word are correct and the rest is garbled, the brain to some extent puts in what should be there.

In short then, if you have the fortune (or misfortune dependent on view point) of ever meeting me, consider this fair warning that I may with complete aplomb tell you that there is an ancient bylaw in place which states it is legal to kill a Scotsman within the ancient walls of York, providing you shoot him with a bow and arrow and you don’t do so on a Sunday.

Which, as it happens, is entirely true.

Does anybody else have problems with dysphasia or similar cognitive difficulties?
Wishing you many spoons xxx 

*I beat him once, but I’ve never managed it since and that once was with the help of some bonus rounds on the Aztecs, classical mythology and wordplay. Much to learn you have, young Skywalker.

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 truth4seekers.wordpress.com)

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

Let's get down to business

Yes, “To defeat the Huns” did just run through my head. Mulan ruined that phrase for me. I also can’t pack anything substantial without “Hockety pockety wockety whack!” skipping through my head either (“Books are always first you know!”)

(Growing up is overrated anyway. Image source unknown)

Stop it with your raised eyebrows, I can see you.

As I promised – an exercise post!

In light of my previous post I feel I should set out why I engage in the amount of exercise I do, which is a fair bit. From childhood I’ve always been very active – we had a dog to walk every day, and also lived just over the border from the Peak District which as anyone who has been will know is a beautiful part of the world and also the biggest and best kind of adventure playground when you’re young. Like most active children I tried plenty and not everything stuck, but the two main loves were horse riding and skiing, both of which I’d pretty much given up by the time I started looking into Pilates.

I wanted something I could do inexpensively in my own home – I had been swimming regularly but found there were too many opportunities to get cold in the process and that I was pretty reluctant to venture out in the middle of winter to get wet – there’s something about it being dark upon leaving work that makes me incredibly disinclined to go back outside.

About six months before starting to have symptoms I decided to try my hand at Pilates. I had a nasty fall from a horse at 13 which left me with a back injury nobody spotted until at 17 I had to start extensive physiotherapy to rebuild the interconnecting muscles in the lumbar region which, after years of being tensed around this hidden injury, had pretty much given up working. Pilates was sold to me on its central core strength elements and its low impact nature, making it a safe option for me as far as my back was concerned - although pretty much recovered I’m still very cautious.

I don’t exercise with a specific body shape in mind and I don’t have excess weight to shift (I don’t want to sound like I’m showing off but I may as well be completely honest) so in the first instance it was mostly purely for enjoyment.

Looking around on the internet I found many recommendations for the 10 Minute Solution series. I bought their “Pilates for Beginners” DVD and spent a few weeks doing the full fifty minute workout once a week (the workout comprises of five ten minute sections) and soon found it wasn’t particularly challenging. I progressed to the “Pilates Perfect Body” DVD and have stuck with this one since. The DVD’s five sections are:

• Arms
• Bum and Thighs
• Stomach/Abs
• Silhouette
• Stretch (I use this as a cool down personally)

(My DVD, available on Amazon for very few pounds. Image from fitsugar.com)

I’ll be honest that in the strictest sense it’s in no way pure Pilates. There’s a core element to every exercise, but the full programme comprises some moves derived from Hathi yoga and even classical dance training. There’s also more resistance work using your own body weight than you might imagine upon hearing the word Pilates. Most exercises have some modifications to make it easier if you need to – the leg section in particular makes plenty of allowances for knee and hamstring difficulties (my hamstrings are terrible).

I continued with the workout as much as I could through the pain and found it actually did work as a pain relief to a certain extent. What I failed to notice until the following winter (this one just past) was just how much stiffness I had now become prone to. I gritted my teeth and upped the number of times a week I completed the workout and slowly noticed improvements in flexibility.

This is in no way a miracle cure, I’m still in pain on a daily basis and I still have a lot of stiffness to combat, but every little helps and this is something which has worked to an extent for me.

At the moment I aim to do the full workout three times a week whenever possible, and have a tendency to do sections only on other days if I spot a particular problem. What I had to learn (and fast) was the difference between pain which could be alleviated a little by exercise, and pain that exercise would exacerbate tenfold.

I’m not sure if this is in any way typical of Fibromyalgia, but I’ll get it down and feel free to open discussion with comments below as I’d be interested to see comparisons. The pain associated with stiffness tends to be a dull ache that’s always there with occasional stabs of sharper pain upon movement. The other kind I think is to do with the weather as it seems to rear it’s head whenever it’s damp or cold, or due to be. It’s a much more deep-seated ache and throbbing and the only way I can describe it is “nauseating”. It completely invades my concentration and is pretty much a guarantee of a bad day or an oncoming flare.

It’s also why I hate the winter, as I spend most of winter riddled with the latter and with episodes of the former.

(If wishes were horses.... Image from uproxx.com)

What I’ve found is the latter just can’t be relieved and I have to sit it out, but the stiff and sharp pain tends to be lessened to a degree by doing the exercise. It’s not a perfect solution and I still muck up my judgement badly sometimes, but better to have relief some of the time than not at all.

I also used to pole dance, and I’d ask you to put aside whatever preconceptions you may have involving scantily clad ladies in nightclubs for the purposes of this post. It’s a fabulous strength exercise and I found it to be a surprising amount of fun. I had two friends who taught me on their pole at home in Sheffield, and I intend to pick it back up in York when I have the opportunity. Surprisingly, if done properly it doesn’t aggravate my joints, but mistakes are painful so it’s a great incentive to learn fast and strive for excellence.

I wanted to return to it this year but the day of the classes changed to later in the week, and as by about midway through Wednesday I’m usually dead on my feet it was a bit too much. It is something I’m keen to go back to though. There’s also a jive class my other half used to go to which we are going to try. I’ll know very quickly if I’m exceeding my limits and will be sensible if that’s the case, but it’s worth a try.

So, what’s changed? The improved flexibility has certainly taken the edge off some of the stiffness, even now the weather is turning damp and cold I’m not as stiff as I was last year at around this time. The downside is I’m far more muscular and what little fat I carried has slewed away, which does have the negative impact of heightening the allodynia when it’s bad as there’s little between the skin and the burning, aching muscle underneath. The somewhat intoxicating rush of endorphins released after exercise is also quite helpful in terms of pain relief.

I always follow up exercise with a bath as hot as I can stand it to soak in and then make sure to keep all the worked muscles warm for the rest of the day/night, and as long as I stick to this routine I find it relatively non-disturbing and I don’t have too many episodes where I regret it the day afterwards.

   

What also happened as a result of the jump from once a week to three times at least is my entire body shape changed. It took me a while to come to terms with this (nobody likes having to replace half their wardrobe all of a sudden) but I’m coming to like it now. I’m the slimmest and yet heaviest I’ve ever been because I’m becoming far more muscular, which wasn’t something I aimed for but it’s not a bad thing to gain some definition and shape.

Or to put it in the rather deprecating vernacular I usually use:

 “Great Scott, where did that arse come from?”

Invisible Illness Isn’t a Choice, But I Choose To…. Invisible Illness Awareness Week 2013.

I choose to... continue with my creative hobby despite the difficulties and pain it presents in the face of my chronic ill health.

I accepted a long time ago that I’m a creative soul, and what I mean by that is that if I don’t have an outlet for creativity then my general well being suffers noticeably. I don’t quite feel like myself unless I can occasionally sit down and exercise ideas.

My particular strength lies in sketching, and in replicating what I see. I’d love to be able to create from my own head, but that doesn’t seem to be something I’m destined to do and I feel a mixture of awe and envy for those can. However, I’m happy enough with my ability to put down on paper with a pencil whatever is in front of me. In recent years I’ve turned my hand to replicating album covers, mostly heavy metal albums and particularly those with a dash of the fantastical about them.

Thus far I’ve taken on Trans-Siberian Orchestra’s Lost Christmas Eve, Edguy’s Hellfire Club, Sonata Arctica’s Reckoning Night and most recently King Diamond’s Abigail – a departure in style from my norm and something I enjoyed all the more for the novelty.

I’m one of those people who get a real buzz from buying art supplies – even if it’s just a new sketchbook to replace its full predecessor. I also own a beautiful set of Derwent Coloursoft pencils, a Christmas gift I still get somewhat giddy over using – I’ve been known to get them out just to look at them on occasion. If anyone is looking for a high quality set of pencils without paying a portion of your immortal soul to Faber Castell, I really recommend them.  

(MINE! Image from artifolk.com)

Why is this a choice? Sadly, my hands aren’t what they were, I have noticeably less dexterity and they protest painfully when put to work with a pencil. The first time I sat down to sketch and found this was the case was probably one of the lowest points in my journey with chronic illness. The one talent in which I wasn’t merely mediocre it seemed would be taken away from me. Though no small part of creative skill lies in the mind, I’ve always envisioned for myself that my talent sits in my hands, and it felt like my own skilled hands and been replaced with an ungainly, awkward collection of fingers which didn’t quite work. At the time I couldn’t see a way round it and so despaired for a while.

Since then I have found that with the help of neoprene heat therapy gloves (I had to try out a couple, and eventually settled on a thinner more flexible pair) and teeth-gritting determination I can still create. Some months ago I completed a composition around The Last Unicorn film for a friend, and in finishing it I took a huge step in my own recovery. It was difficult, and painful to the point of tears sometimes, but whatever the cost to find that I could still do what I loved was a relief I cannot describe.

(My attempt at King Diamond's Abigail)

It takes longer and it is inevitably painful – this most recent attempt saw my knuckles swell for the first time and I’m left with the residual stiffness and pain as I write now, but for the sake of my own sanity it does me the world of good to occasionally fight through the discomfort and indulge in my beloved creative hobby.

And believe me, nobody wants to see my take on “artistic temperament” when such an outlet is denied!

This has been my blog for Invisible Illness Awareness Week 2013, a contribution along with my guest blog last week. I hope you like it and hope to encourage other bloggers to join in throughout the rest of the week!

Wishing you all many spoons xxx

30 Day Chronic Illness Challenge: Day 19

Day 19: How do you feel about the future?

Mostly fine. I'm a bit of a worrier by nature - if there's the possibility of an issue I want to do all the thinking beforehand and inevitably the issue doesn't then arise and I feel pretty foolish. However, it just isn't in my nature to go along for the ride and trust in luck to see that everything straightens out in the end. It takes all sorts after all.

Oddly this personality quirk doesn't seem to extend to my health, a foible I'm very grateful for. One of the first things my diagnosing GP said to me was that Fibromyalgia degenerates with age - that fact is as certain as it is unavoidable. In my mind I could worry about the specifics of when and how this will come to pass, or I could do as I am doing and go forwards with the will to do as much as I can for as long as I can. I don't want to potentially reach an age where I look back and regret everything I didn't do with my former comparatively better health.

If anybody's seeing a pattern of a mulish attitude emerging in these answers, that's not a coincidence. I'm extremely stubborn, be it gift or curse.

(Alarmingly accurate given that I'm also rather small. Image courtesy of gelaskins.com)

Whatever the future holds, the gods of Fibromyalgia and Interstitial Cystitis will not be taking me down without a fight.

30 Day Chronic Illness Challenge: Days 7 and 8

(I was back at home in Sheffield for the weekend, hence the double-up for the day I missed!)

Day 7: What was the biggest realisation you've had?

This was a two-fold realisation I think - firstly it was the discovery that nobody can truly understand the nature of a chronic pain condition unless they are experiencing it themselves and that it isn't my fault for poor explanation or not quite being able to articulate it in a way from which an epiphany could spring.

Secondly and I think more importantly it was that this is, in fact, not always a big problem. As long as I can make the people who need to understand do so - and I really have adopted a "take no crap" approach to that - I'm fairly accepting of the fact most people can't really understand.

Providing nobody outright tries to accuse me of lying, or tries to assert that they know better than I do about my own body then I really don't mind most of the time. I'm almost uncharacteristically assertive with those who are on the "need to know" list - my work, for example - but otherwise I revert to type as a very un-showy individual and actually don't really want that many people to know and understand in depth and detail what's happening in my weird and wonderful body and brain.

Unless of course either does something which has colossal comedy value - then I think that's fair game to share. I find laughing at my chronic quirks soothing and helpful, and the gift of laughter should be shared as much as possible in my view.

And if I ever particularly need attention brought my way (illness-wise or not), shouting "I've got a plan and it's as hot as my pants!" will usually do the trick!

(Blackadder references - both brilliant and necessary.

Image courtesy of www.disgracejones.com)

Day 8: Where do you see yourself in five years time?

I really do despise these sorts of questions. 

Most of the reason is that I really don't know. I achieved one of my main wishes this year in moving in with my partner in York, so I suppose I've rested on my laurels a bit since then. It's hard to make this entirely illness specific as well, as is often said incurable ill health does touch on and entwine with all aspects of your life. 

I'd like to be in a job where I'm happy enough and with enough leniency in key areas to allow my health to remain at optimum level (which has not been happening recently) - having this stress reduced is a very big priority as I am determined to hold down a full time job. It's a very large point on which I am not prepared to budge unless my health were to get significantly worse to the point where it would be unfeasible. To have an environment conducive to good mental and physical health and still be in a job which I find intellectually challenging sounds like a large ask, but I don't think it's impossible to achieve. 

One of my other long term ambitions is to take on a big walking challenge for a Fibromyalgia charity. Not everyone is physically capable of undertakings such as this in the name of the charities they hold most dear - that's the nature of chronic illness - but if planned and trained for carefully I believe I can do it. I've also always been one of those people who feels that those who can essentially should. I've looked into the Yorkshire Three Peaks and also into a 26 mile walk over the border from my native Sheffield in Derbyshire in countryside I am familiar with as I spent much of my childhood and adolescence exploring the wonderful Peak District. I am in no position to do so this year and probably not next year - training up for something of this nature would be a huge long term undertaking, and has to be preceded by what I've previously mentioned in terms of getting settled into healthy and challenging full time work. 

So, there you have it. In some ways I have never been a person who is content to dream small. 

And speaking of dreaming big, after 77 years we have a British Men's Singles Wimbledon champion. I'm not a huge tennis fan but I can always get behind a British champion of any sport. I will round up my thoughts for today with saying well played and well done to Andy Murray.

(Well deserved and a long time coming. Image from Tumblr, source unknown.)

30 Day Chronic Illness Challenge: Day 2

Day 2: How have these illnesses affected your life?

You’d assume this would be an easy question to answer, but it turned out to be somewhat difficult.

I think the simplest difference to explain was that prior to falling ill I was in the habit of tearing about at top speed doing anything and everything with little thought to consequence – a good night’s sleep would fix everything, right?

Now I have to plan carefully, allowing for day to day fluctuation, proximity of activity to other planned outings, weather and other factors. Nothing can be undertaken lightly any more. On the worst days I struggle to do even simple day to day tasks as the pain and fatigue become overwhelming. Thankfully I seem to be having less of these since I moved up to York to lose my weekend round trip of 130 miles to see my partner.  

Like many other people I’ve spoken to my social circles underwent some dramatic changes. For whatever reason not everyone wants to stick by the chronically ill – I’ve moved well beyond the point of wasting my time being angry about it. Instead I choose to focus on the amazing people who either stayed by me or stepped to the fore and became fast friends. It’s hard to feel negative about the changes when faced with such overwhelming reasons for positivity.

I think by far the hardest thing for me to accept was the dramatic effect on the things I loved to do with my spare time. I finally had to give up my long-held hope of ever returning to horse riding as there isn’t a chance of my being able to handle something so high-impact, and one fall could do tremendous damage long term. My creativity is not being wholly satisfied as my hands don’t allow for long periods of work (I’m a sketcher primarily) and a lot of the time I cannot summon the requisite levels of concentration. I had planned to create a Dungeons and Dragons inspired triptych (I can see you judging, desist at once!) for our flat but I haven’t even been able to begin yet. One day!

(A previous sketching effort - Sonata Arctica fans may recognise an attempt at the Reckoning Night cover.)

 

I am however tremendously lucky in a lot of ways in that I’m still managing to work and have a social life, albeit different to before. I was never a big drinker but now cannot drink at all – alcohol has even started to smell “wrong” to me after being sober for 18 months.

 

I can still exercise (in fact that’s the only reliable pain control I’ve found thus far) which is a blessing – I led a very active youth and I’m well aware I would be driven crazy by inactivity. However, having to exercise to avoid future pain has sucked the joy out of it for me, but my partner and I are about to start going to jive classes and that will give me something to do purely for fun again.  

 

Also, it has given me the opportunity to write this blog which is both cathartic, an excuse to be somewhat creative and a chance to meet and talk to other Spoonies. Whilst I started the blog in the hope of being able to help others I’ve actually grown quite attached to it for my own reasons also.  

So in summary I would say whilst the effect has been profound, it could be a lot worse and I'm very grateful for small mercies.

Elementary, my dear Watson*

I'm sure many of you will have seen the article below in the last week or so, as it marks a possible breakthrough in research for Fibromyalgia:

Doctors confirm Fibromyalgia is not imaginary

In all honesty I have some difficulty with the article, as it seems to use the phrases "nerve endings around the blood vessels" and "blood vessel endings" interchangeably when they are clearly not the same thing. Also, whilst it's fantastic to have a proven pathology, there's too much focus on the hands and no clear indication of whether the findings would be consistent around the rest of the body.

Does anybody else suffer particularly with their hands? I have hand issues on and off but they are not and have never been my primary pain source.

Also, being by nature particularly anal about standards of written English, the article's poor grammar flicks automatic "disregard" switches for me.

However despite any misgivings it will be interesting to see where research takes us in the future. The question which came to my mind is that if the finding of these specific nerve endings is going to supersede the four quadrant and pressure point tests in the diagnostic stage, if this pathology is found to not be present where does that leave patients who have been diagnosed with Fibromyalgia using the accepted tests?

(This diagram from phys.org illustrates just some of the variety of symptoms found in Fibromyalgia patients - one of the reasons I find this sudden focus on purely the hands unsettling.)

I have my reservations about this new theory being widely accepted - the following is an article from 2008 which already declared Fibromyalgia was not a figment of imagination:

Fibromyalgia: a real disease

This particular research demonstrated abnormalities in cerebral blood flow to be part of the pathology discovered in Fibromyalgia patients, and also ties neatly to the pre-existing concept of central sensitisation of pain. It bothers me that previous findings seem to be disregarded wholly in the face of newer ones - why can both of them not be true? What makes them mutually exclusive by default, as seems to be suggested?

It's also worth bearing in mind that at any point in time, you can always find counter-balancing negative studies reported, such as the following:

Weather conditions do not affect pain or fatigue in Fibromyalgia

The Dutch researchers aren't dismissing the idea entirely, as the headline would suggest, but in their particular control group they found more evidence against than for the concept of symptom differentiation caused by the weather. I've covered this in my own post Winter is Coming, and I have spoken to plenty of people who react similarly to cold and wet conditions or to high atmospheric pressure.

I can't help but feel deep down that people have gotten carried away with this new hand research, when there is already a body of research present receiving little to no attention. It's far from the only research being carried out in this area, but for whatever reason it has accumulated much more coverage.

I read a statistic recently which suggested ground-breaking research in even basic science can take up to forty years to penetrate into medical practice and become part of accepted treatment. - on that basis I'm sure more will have been discovered by the time this research has had any chance to enter the popular medical conscience.

Whilst it can only be celebrated that we now have a widely-seen proof of Fibormyalgia being real (as if any sufferer ever doubted it for an instant!) I think it's easy to see why the community as a whole remains quite divided in their opinion of the new findings.

On a lighter note I wanted to share this as I'm unsure if everyone will have seen it - Christine Miserandino's Spoon Theory made the BBC News website here in the UK!

Running low on spoons

Well done Christine!

I'd love to hear what others have to say about the new research, or indeed any of the existing work I've posted. Please feel free to leave me a comment or contact me (The Green Moranth tab gives you several options of how to do so.)

Wishing you all many spoons xx

(EDIT: A friend very kindly sent me the full paper for the new research - it isn't ruling out anything, merely suggesting the hands were a source of the particular phenomenon being previously recorded and so chosen for use in this study. Short version: you apparently cannot trust ANY press to report scientific research accurately!)



* Yes, I'm well aware Holmes never said it, but who am I to fly in the face of tradition?

So Say We All

The aforementioned kitten post is delayed once more, friends!

I’m sure plenty of readers will have already seen this image of the note left on a young lady’s windscreen by a passer-by after she parked (rightly) in a handicapped space.

(The note left on Emelie Crecco's windscreen which she bravely shared.)

I’d dearly love to say it’s the first instance of such ignorance I’ve seen, but that would be far from the truth.

The situation doesn’t directly apply to me – I’m not ill enough to be considered disabled – but I know people who are and they sprang immediately to mind upon seeing this.

Now, had the scenario been a traffic warden stopping the person and asking to see their blue badge (or whatever equivalent applies) I can understand – they’re doing their job. For a random passer-by to make such a judgement and then have the gall to act upon it is nothing short of rude.

To illustrate the point of invisible illness and disability somewhat further (although it never ceases to astound me that the concept of “invisible” needs explaining), the following is a list from DisabledWorld.com of SOME of the disabilities in existence considered to be invisible – they add their own caveat that this is far from an exhaustive list:

·         Allergies

·         Arachnoiditis

·         Asthma

·         Autism

·         Bipolar Disorder

·         Brain injuries

·         Charcot-Marie-Tooth Disease

·         Chronic Fatigue Syndrome/M.E.

·         Circadian Rhythm Sleep Disorders

·         Coeliac Disease

·         Crohn’s Disease

·         Epilepsy

·         Fibromyalgia

·         Food allergies and intolerances

·         Hyperhidrosis

·         Hypoglycemia

·         Inflammatory Bowel Disease

·         Interstitial Cystitis (aka Painful Bladder Syndrome)

·         Lupus (all forms)

·         Lyme Disease

·         Mental Health Disorders

·         Metabolic Syndrome

·         Migraines

·         Multiple Sclerosis

·         Multiple Chemical Sensitivity

·         Narcolepsy

·         Primary Immunodeficiency

·         Reflex Sympathetic Dystrophy

·         Repetitive Stress Injuries

·         Rheumatoid Arthritis

·         Scleroderma

·         Sjörgen’s Syndrome

·         Temperomandibular Joint Disorder

·         Transverse Myelitis

·         Ulcerative Colitis 

There are 35 different conditions in that list. 35 different reasons you cannot see for the use of that disabled parking badge. 35 different reasons why the person with the badge is not lying.

35 different reasons to think before you speak or act.

I think the point that annoys me most with snap judgements like this is that in a sense it punishes the ill person for doing well, for having a healthy mental attitude to their difficulties and doing their best to participate in a life as normal as possible.

You look relatively OK and you’re going about average every day business? Ah well, there must be nothing wrong with you then.

It becomes apparent sometimes that as a sufferer of long term ill health you are expected to be a spectator of life and not a participant – and no, you can’t step outside of that extremely narrow box, foolish Youngling!

If we ignore general ignorance and all the other negatives which tend to lead to those sorts of assumptions, I think a large part of the problem is that the psychological side of long term well being is disregarded by many, when to my mind it’s equally as important as the physical aspects. You can’t fight the physical cavalry if your mental infantrymen are all missing in action.

Why should you be expected to live life on the sidelines just to fit the narrow imaginings of other people?

I’ll use an example from my own experience. Whilst undiagnosed last year I went to the Bloodstock Open Air Festival – I’ve been going since 2008 and it’s become something of an annual tradition. I enjoy the music, the friendly atmosphere and the chance to see friends I may only have that once-a-year opportunity to catch up with.

(Sorry Doc, Avantasia are more than a good enough reason to be silly!)

Most people were supportive and thought my attending was a good thing – you shouldn’t give up without trying was the general consensus. However a couple of people did start with the “If you’re supposedly so ill, what are you doing here?” comments.

Now, there’s plenty in the cold light of logic which is impractical in attending a three day outdoor festival. However, impracticalities aside I chose to put my mental well being first for those three days and do something I love in the company of people I love.

It had nothing to do with how physically well or not I was– it was a choice based on the fact I’d already had to give up plenty, and that was one thing too many. I’ve said before that I firmly believe that occasionally you have to make logically flawed decisions for the sake of something which is important. You allowing yourself a break and setting boundaries in terms of allowing yourself to participate in life is not only healthy in the long term – I believe it is entirely necessary.

This was something of a lively argument I used to have with my regular GP before I moved up to York. He’d lay out all the practical issues with whatever I wanted to do, and I’d come right back with “With all due respect, I need to do it.” He eventually came to realise that I’m far from a fool and would take all the precautions possible including any suggestions he had to make. I’d make sure I rested up before and after said knotty desire of mine, and I’d do everything in my power to minimise the impact.

During my last appointment with him he wished me luck and said I’d actually had an effect on the way he viewed the overall complex picture in terms of when mental well being contradicts physical limitations. He agreed that sometimes if done sensibly it could indeed be a positive thing.

The Retired Bridgeburner 1, Convention 0?

What I choose to do for my own mental and physical well being is my business and nobody else’s. I respect the informed opinions of the medical experts I deal with, but that doesn’t mean I won’t challenge them if I feel the need to. Passers-by can make all the assumptions they like – nobody knows my body and my health limitations as well as I do, and last time I checked I was not obliged to run my own informed decisions past anyone else, however entitled they may feel to their opinion being heard.

Something possibly worth considering if you are an uninformed by-passer of any ilk – you are seeing only the final product in looking at the ill or disabled person being wherever they are, whether it be a heavy metal festival or sitting parked in a disabled parking bay. You have no idea of the process which led to that – the days, weeks or months of planning and preparation which may have been entirely instrumental in that trip being possible. How do you know if that isn’t the first time the person has gone farther than the end of their street in six months?

How do you know they haven’t gone farther than the end of their street in order to allow themselves to do what they’re doing now?

Think before you speak, and if necessary, don’t speak at all. Your assumptions could do more harm than you know, and they stick in the memory for far longer than you realise.

Wishing you all many spoons xx