My Mad Fat and Frankly Wonderful Diary

If you’re unfamiliar (I’m unsure of its availability in other countries, although apparently there’s a US version in the pipeline) My Mad Fat Diary is E4’s comic drama about the highs and lows of being a teenager in the height of the Cool Britannia of the mid-90’s, and the beginning of the second series has just aired in the UK.

Why am I telling you this? I picked up the first series all in one go during my period of temping interlaced with unemployment when I first moved to York. I expected it to be something which would pass an afternoon without expending too much brain power, be mildly entertaining in the process and leave it at that.

What I found in actual fact was a show with an almost revolutionary take on mental illness and overall health and appearance.

(Image from fanpop.com)

The main character Rae Earl is an overweight girl who in the first episode has just been discharged after a stay in a psychiatric ward to treat a variety of psychological conditions which have led her to self harming and binge eating. She also suffers from self image problems and a lack of confidence surrounding her weight.

Something else – Rae Earl is a real person. The show is based on My Mad Fat Teenage Diary – a book written by Earl using extracts from her teenage diary entries.

I had initially avoided the program when it first ran on television because Channel 4 and its group of channels aren’t exactly known for being sensitive in their handling of various topics like these. I will honestly hold my hand up and expected it to be a rather cruel car crash of a programme.

How wrong could I have been? Aside from Rae we also meet the other young people who live in the psychiatric ward, most notably Tix who suffers from an eating disorder, over exercising and an undisclosed problem which leads to her lashing out when touched by anyone or when she is feeling stressed.

At no point are any of these things trivialised, looked down upon or given to be anything less than the serious illnesses they are. On no occasion does My Mad Fat Diary make any distinction between physical and mental illnesses – the characters are ill, and no further categorisation is needed.

There’s something of the female equivalent of a mixture of Adrian Mole and The Inbetweeners about the show, and Sharon Rooney should win something for her performance in the lead role of Rae because she’s nothing short of fantastic.

(Probably the core message of the entire show. Also I should probably give you a language warning, because teenage girls are both rude and at times disgusting. I know, because I was one.)

Whilst the show does a brilliant job of exploring the consequences of mental ill health on young people (particularly anxiety and depression), I think one of its strengths is in its “everybody has problems” approach to the portrayal of adolescence. Within five minutes of meeting the character of Chloe I rolled my eyes and assumed instantly I was to be whacked over the head yet again with the hammer of “traditionally attractive people have horrible personalities and never have any problems whatsoever.” Oh how wrong I was.

The pretty and thin “popular” girls have their own insecurity problems too, and this is explored yet more in the opening of the second season. But lo! The male teenagers have issues too – the homosexual character of Archie’s desperate attempts to remain “under the radar” when the group progress from secondary school to college are disturbingly poignant in this respect.

There's no "You're a healthy weight, so you can't have an eating disorder", or "But you're attractive, you can't have insecurities."

My Mad Fat Diary deserves so much praise for both its effective handling of mental illness and the consequences they have on peoples lives and for its point blank refusal to play games of stereotype or comparison. It doesn’t treat the mentally ill characters as yet another statistic – they are all fully fleshed out and realised as human beings.  In short, it accepts that teenagedom was a scary place for us all.

I think there’s something to be learned from that.

I really recommend giving the show a try if you haven't seen it yet. I'm reliably informed that it is all available on Youtube!

Wishing you all many spoons xxx

"The Wheel weaves as the Wheel wills"

So said…. well pretty much everyone at some point in Robert Jordan’s The Wheel of Time, completed posthumously by Brandon Sanderson with 2013’s A Memory of Light. Bear with me, there is indeed a point to referencing what is held by many (if not myself) to be the greatest modern fantasy epic.

I had a complex love-hate relationship with the series over the ten years on-and-off of my reading it. I still maintain that the first four or five books are wonderful, and then there’s a sharp drop off in quality for me. I gave up (I thought for good) after the eleventh volume Knife of Dreams.

A few years later however I was drawn back in by picking up The Gathering Storm in a three for two offer as it was the least worst option for the free book. I can’t quite say why, but Sanderson’s own foreword and the words from the publisher Orbit re-kindled my interest. For whatever reason, I couldn’t quite turn away in the face of such overwhelming love and respect for the work and the author. I felt I owed it an attempt at least. I flew through it and the next volume Towers of Midnight. Troubled though the relationship may have been, I once again felt it needed the closure of the final book.

(There might have been a *squee* the first time I saw this. Image from Orbitbooks.net)

I read A Memory of Light in two days flat. Was it perfect? No, but then nothing is and Sanderson had a mountain of expectation to contend with. Was it the closure I wanted? Absolutely. I had uttered several times the fact that if the series didn’t end with a version of the iconic paragraph with which every volume began then I would count it a crime. I needn’t have worried, because Sanderson and Jordan before him were never going to be foolish enough to not do so. As was written, “There are no endings to the Wheel of Time.”

Time is something I’ve been thinking about, because I'm pretty poor at maintaining a calm relationship with it. Despite knowing the limitations of my body and its perpetually low spoon count, I still have an expectation to be able to accomplish everything in the initial (often unreasonable) time frame I give myself.

I’ve posted about the exercise routine I’ve taken up before, and I try to do that three to four times a week. Usually this works out reasonably well, but there are days when I'm so tired that it would be foolish to attempt it because the only likely result would be an injury and/or a flare up. However, when this happens I can’t help but feel I'm a day behind in terms of fitting enough sessions in. In essence, I feel that I'm constantly running out of time. Then of course there’s the wrong time of the month when the whole idea goes pear-shaped for the week.

This feeling carries through to simpler things too. I’ve always been someone who was up with the lark (half past 8 was a cracking lie in, in my book) but more often than not I sleep in much longer at weekends now unless I set an alarm. I can’t quite escape the feeling I’ve wasted half the day, even if I do feel better for the extra sleep which I obviously needed.

I think, in essence, I just don’t do very well with being tired.

The way I’ve tried to combat this is by a given point in a day (particularly a work day) I can just about tell how tired I'm going to be come the evening. Rather than getting to the evening and then being annoyed at my failure to manage to do what I wanted to get done, be it exercise, house work or whatever else, I hit this given point in the day and I mentally decide to give myself the evening off. It sounds too simple, but I can guarantee it works. You haven’t therefore failed to do anything, because the time off has been given like a gift. You’re not spending the evening on the sofa because you’re being lazy; you’re doing so because you have that gifted evening off.

(An evening off: gift wrap optional. Image from esse.com)

This proceeds into how much of something I'm able to do. A little of a task completed still makes me feel better than not doing anything at all, so I do sneak the odd bit into my “evenings off” just for the sake of my own sanity. I still can’t sit and look at a pile of ironing without going slightly barking in my need to get it finished. I'm learning, albeit very slowly.

At the end of the day though, what’s the worst that could happen? If I have a night off from exercise then I just need to accept that the aching may be worse the following day, and I’ll tackle it when I feel able. If the ironing doesn’t get completely finished, does anyone die? Do world-ending paradoxes begin to spring up?

What actually happens is that the cat ends up sleeping on it, which is irritating but not quite so disastrous. I did have some small modicum of revenge last weekend though as she was packed off to the vet to get her claws trimmed…. That’ll learn you, moggy.

I’m house proud and I like a house to be clean but I can either berate myself silly for my lack of spoons, thus leading to probably more fatigue and negative feeling, or I can just accept that we live with a very fluffy cat so a certain amount of cat hair is unavoidable. Even when I’ve just cleaned, she rolls all over before you can say “Stop it, I’ve just vacced that carpet!” Which she resolutely ignores.

So, if the wheel (or Wheel, depending on how you like to think) keeps turning regardless of how engaged you are with it, why not step off every so often? A little “me” time and relaxation certainly never made anything worse.

To fellow Wheel of Time readers, I will add just one more thing. Dovie'andi se tovya sagain.*

Do you find it difficult to take evenings/days off? How do you approach it?

Wishing you all many spoons. xxx

  

*Even a love-hate relationship won’t stop me remembering trivia from anything I read…

Let the wind carry you home...

Let the wind carry you home

Blackbird, fly away

May you never be broken again.

Beyond the suffering you've known

I hope you find your way

May you never be broken again.

Blackbird - Alter Bridge

I'm sure many of my readers have pets of some description, and I'm sure many more have heard about therapy animals and that sort of thing. Whilst having never experienced the official thing, I've always been a firm believer in the fact that animals are often very soothing and make for wonderful companionship.

For some background, I grew up with a German Shepherd. He was six months older than I was and despite the fearsome reputation of the breed he was a true gentle giant. Whilst he pulled my Dad's arm from his socket on walks, when I was given the lead he walked as quietly as a lamb, and in the end he reached the ripe old age of 13 (excellent going for a pedigree Shepherd).

Now, as you all know I have a cat. Or should I say I am part of the staff of a cat - the more years I spend with her I become further convinced that nobody truly owns a cat except the cat in question.

(Whimsical, independent and partial to the occasional RPG)

Despite the fact going out, driving and the like is essentially tiring and a recipe for flares, fatigue and frustration when I do get out one of my principle loves is to visit animal centres. When I was younger our family holidays were mostly in Devon, staying on a farm and day tripping about. Two things were always on the itinerary - heavy horses and birds of prey.

I've spoken before about having to give up horse riding, first for financial reasons but once the finances were back in place I started to suffer with ill health, and with the joint problems and diagnosis of Fibromyalgia my last few hopes were set aside. At the end of the day even on the quietest of school masters the very nature of horse riding puts tremendous pressure through the joints, particularly in the back and legs. Given my knees and hips in particular are terrible, it would be beyond stupid for me to try and return to the sport. However, I've always loved horses and they are wonderful animals to spend time around even when participating in riding isn't an option. They're intelligent, sociable and I find their presence very soothing. Donkeys have a similar effect - they may not be anywhere near as pretty but I've always found them very calming.

Birds of prey however? Now they are something still well within my power to fully enjoy.

Before Christmas a friend spotted the York Bird of Prey Centre* on a Groupon offer - their hawk walks and half day falconry experiences were reduced by 60% in price. I'd visited the centre earlier in the year and had been very impressed by their healthy and happy birds, and in particular their adherence to the art of falconry as it would have been in medieval Britain - no tagging, no telemetry and no gadgets, just pure training and handling time with their array of birds. Needless to say, we snapped up the opportunity.

(Shadow the Golden Eagle. Clearly finding me nowhere near as interesting as I found him....)

Last week we went for our booked in half day experience, only to be met with typically British weather. Rather than being sent away and told to rearrange, the centre put on something of an ad-hoc afternoon of talks about some of their various birds which included the chance to handle them for the whole group - including to our surprise their stunning Golden Eagle. As I said above I've been going to falconry centres since my childhood, and I don't know of another with one of these magnificent birds which is suitable to be handled. Whilst the opportunity was a wonderful thing, the staff and volunteers did not shy away from the fact the eagle is a fearsome predator, dangerous not only because of its power (2000 PSI of pressure per foot, no less) but also for its intelligence. It provides an instant mixture of awe and fear to be told the bird on the end of your arm can hear your jugular vein. Ick.

We also had the opportunity to hold a Barn Owl, a Red-tailed Hawk, a European Eagle Owl and a Peregrine Falcon, which I think is still probably my favourite bird of prey. If you ever have the chance to watch a Peregrine working on a lure I recommend you take it as you are in for quite a treat.

So how was I after this trip?

Extremely sore. As beautiful as he was, holding a 10 pound bird on my weaker arm was never going to amount to anything but an unhappy shoulder. Despite spending most of the day sitting my hips and knees were as they always are and I was absolutely exhausted.

The situation wasn't helped by driving our courtesy car (I had a minor bump a couple of weeks ago) - it was the new model Fiesta and I hated it. Disproportionately heavy to drive and the ride was very uncomfortable - it almost felt like being back in my old Ka. Long live the Tardis car!

(Tardis car....  from the planet Gallifrey in the constellation of Kasterborous, the oncoming storm, the bringer of darkness.... and it's basically just a Hyundai i10 isn't it?)

However, nearly four hours with a group of incredibly knowledgeable people and the chance to get up close and personal with utterly beautiful animals? I could never question the fact it was totally worth it.

A conclusion I'm coming to in general is that some things are more important than the pain and fatigue. The enjoyment gained from some experiences outweighs the resultant reaction of my crooked immune system. For me, animals of all kinds are a wonderful distraction and have been a burning interest of mine for as long as I can remember. I visited Chester Zoo last year and I felt the day of walking round it for a good few weeks afterwards, but again it was completely worth it.

My advice? Find the things that work for you and take every opportunity you can to engage in them. It doesn't matter if it's relatively infrequently - once is always going to be better than nothing.

Some things are more important than pain and exhaustion.

I for one am incredibly grateful for that.

Wishing you many spoons xxx



*For anyone who is interested, the York Bird of Prey Centre lives here

The Road goes ever on and on...

The Road goes ever on and on

Down from the door where it began.

Now far ahead the Road has gone,

And I must follow, if I can,

Pursuing it with eager feet,

Until it joins some larger way

Where many paths and errands meet.

And whither then? I cannot say.”

JRR Tolkien, The Fellowship of the Ring

On approaching the topic of looking forwards and not back, it appears my brain is far too mired in all things Middle Earth to not go straight to the above. What the heck, it's a nice song.

What I get from this verse – and notice I didn’t say “what the author meant”, because there’s nothing irritates me more than assumed knowledge of literary intent – is the importance of looking and moving forwards. I figured that makes a reasonable post for the beginning of the new year.

It’s not an unreasonable philosophy for life in general but I think it’s even more important in the context of long term ill health. There’s always a temptation to study the past and attempt to figure out where health took a turn for the worse and why the immune system was led astray (the fickle swine).

The problem is that looking backward is the bane of acceptance. Having one eye over your shoulder will not make you well, will not provide the answers you wish for and will not bring any sort of peace.

One of the questions in Invisible Illness Awareness Week’s 30 day challenge was why you think you have your illness/es. Personally I gave up searching for whys and wherefores a long time ago, as it’s pretty counter-productive and leads nowhere. Things happen if and when it is time for them to happen, and I don’t put any further thought into it.

Something threaded throughout this blog over the last ten months (I can’t believe it’s nearly a year old!) is my belief that only in acceptance can there be any sort of recovery, even a recovery marred by lack of a known cure. I’ve just realised that’s an inadvertent Albus Dumbledore quote, but who am I to fly in the face of a good piece of advice however I come upon it?

(I never said he got it right all the time... image from reddit.com)

Part of this process for me was understanding as much as I could about the conditions I was diagnosed with. The community of Chronic Illness Cat which I help to admin has been invaluable in this regard, as it’s often difficult to know what to file under the already diagnosed headings as opposed to anything new. More than all that it can be a tremendous comfort just to hear somebody else with the same condition go “Yep, me too. Rubbish isn’t it?”

I still have some things which I think are separate, but until they either settle into a pattern or occur more frequently I’ve accepted I’m just going to have to leave well alone, because the only option is another painful round in the ring with Gastroenterology. I will go down that road again only if I feel there is no other choice.

The attitude of looking forwards helps in another way also. Retracing steps usually only serves as a reminder of all the things you have given up or had to miss out on, sacrificed upon the altar of your damned unpredictable illness. I’m not saying this is an entirely pointless exercise, as it can always add another flavour to your appreciation of the here and now and for the things you have held on to and that’s nothing to be sneezed at.

However it’s so much more productive to appreciate what’s coming up ahead, both what you know of and what remains to be discovered. Alongside the things outside of your capacity to achieve, there is so much potential for what you can. You don’t have to move mountains or make paradigm-shifting discoveries. You don’t even have to do anything that anyone beside you will appreciate. Striving to delight only an audience of one can be a most rewarding experience.

In writing this I obviously had a think through what is coming up for me in 2014, and there’s plenty to smile about. The night before I turn a quarter of a century old I will be fulfilling a lifelong dream in seeing the beautiful Lipizzaner horses and tremendous riders of the Spanish Riding School of Vienna perform, and I’m incredibly lucky to be able to say I will be watching from the front row. The fact it’s in my hometown makes it just that little bit more special. 

(Image from talktomeaboutaustria.com)

In my continuing refusal to give up on music, I’ll be seeing Trans Siberian Orchestra again. The first time was for my twenty first birthday and it was the first time they’d been to the UK so I am very excited to repeat the experience. A little bird tells me my favourite band will be back on our shores so myself and the partner in crime will be off to find them, and I’m also heading to see The Lion King stage musical for the second time (I couldn’t resist!)

As a result of the discoveries and successes documented in With Strength I Burn, I’ll also be returning to Catton Hall to see my Bloodstock family again. 

More generally though, I’ll have lived in York for a year in February and it’s been wonderful, and returning to full time work has been more successful than I expected. It’s still exhausting and my sickness record will never be perfect, but all in all it’s going well. Now I’ve got this exercise routine sorted I’m looking forward to what next summer will bring. I never expect miracles in the winter but there are certainly some improvements despite the cold, so I’m looking forward to the place I’ll hopefully be in once it warms up.

I've posted on here before about the new-found necessity of a car which I hadn't anticipated before spending my first winter in York. Well, in the New Year it will be time for me to say goodbye to KvltKa and let her go to the great garage in the sky. For all her foibles and problems she's been a good car in many ways. I do get oddly attached to my car for reasons as yet unknown to me, but even so we've reached the point of no return in which the cost of keeping her roadworthy just doesn't stack up as a good investment any more. At the end of this week I'll be greeting her replacement, an alpine blue Hyundai i10 which we've already nicknamed the Tardis for the colour and the deceptive chasms of space inside for what is still a small hatchback. My initial test drive was full of the hilarity of kangaroo petrol and nearly sending myself and the salesman through the windscreen with over-enthusiastic braking, so I can't wait to get driving properly.

Something that has been in the back of my head for some time is the idea of taking on a walking challenge in aid of a Fibromyalgia charity, probably FMA UK. I'm limited as to what build up I can do in the colder months because, stubborn creature though I am, it would be unwise to push my limits in the winter when it won't really contribute and is more likely to cause injury, flares or both. 

However, Alex and I have spoken about starting slowly once the temperature starts to warm up. I won't be doing the challenge in 2014, and it may not even be in 2015 but it feels good to have a vague start date in my head for when to begin the gradual process of working up to it. Having accepted that the more famous Yorkshire Three Peaks walk is going to be beyond the limits of both my health and my fear of heights, the particular one I have my eye on is the White Peak Walk - twenty six miles through my old haunt of the Peak District.

Am I mad? Probably, but it's always been my belief that those who can, should. I'm not entirely sure yet whether I'm in that category but I'm prepared to give it a damned good try to find that out. There are plenty of people with such severe cases of Fibromyalgia that they are completely bed ridden, registered disabled or at least unable to leave their house. I feel I should try to put my relative good fortune to some sort of productive use.

(The view from Monsal Head in the White Peak - with views like this, can you blame me for my choice?
Image from dphotohrapher.co.uk)

In February The Retired Bridgeburner will be a year old. I’ve enjoyed writing but more importantly I’ve enjoyed interacting with all the amazing people who’ve been kind enough to read in the first place and then foolish enough to stick around. Thank you all, and I look forward to continuing our conversation.

So to round up on the theme of looking forward and appreciating what you have and what is yet to come, I’ll quote a different musical.

Enjoy your new year, stay safe, save spoons and dance like it’s the last night of the world.


Happy new year everyone! xxx

In the bleak midwinter

I hope you all had a lovely Christmas!

I have had a relatively quiet Christmas at home. My Dad kindly came to us to save both travelling and re-housing Dovakhitty for the holidays, and despite being low on spoons in the cold I managed to cook Christmas dinner predominantly by myself - and made Yorkshire puddings for the first time only to get them nigh on perfect.

Yes, I know. 24 and from Yorkshire, and that's the first time I've made them. You'd think they'd have thrown me over the border into Lancashire by now really.

Mostly I combatted being tired by doing everything in small stages and setting up as much as possible in advance so all I had to do at each time interval was put something already prepped into the oven. Never has a pseudo production line been so chaotic, but somehow it all worked and we can call my first Christmas dinner under my own steam pretty successful. I still wanted to fall asleep when I sat down to eat, but I'm one of those people who doesn't like sharing the kitchen space when I'm cooking - approach me whilst I'm armed with kitchen utensils at your very real peril!

We were essentially very British for the rest of the day - we drank lots of tea, watched Doctor Who (the less said about that the better) and sat up until very late by my standards setting the world to rights, all the while fending off our resident four legged mischief maker who had smelled the turkey and was determined to relieve us of it at all costs. I have definitely had too much tea and I am receiving just payment with my first IC flare up in a fair few months, but every now and again a little indulgence is good for the soul.

Boxing Day saw the traditional and much spoken of "bracing walk". My Dad hasn't actually seen much of York so we took him round the university campus which is an RSPB designated reserve. Having spent much of my childhood teaching me to identify all sorts of birds whilst we walked our German Shepherd in the nearby woodland every day, this was right up his street. We attempted to take a route along the river, only to find it had burst its banks in the recent storms. Welcome to York, Dad. 

(My very warm winter hat, which I certainly did not buy with the resemblance to Fievel's hat from An American Tail in mind. Don't be silly.) 

Working our way home via Museum Gardens and the famous Minster I started to suffer the sort of aching, stiffness and all over nauseating weakness my fellow Fibromyalgia sufferers will be familiar with. The thing I still haven't gotten quite used to yet is that because I walk at a decent pace and wrap up I don't feel cold - but that doesn't stop it being below freezing and Petunia taking note.

You see, when I moved up to York I failed to consider something fairly consequential in terms of my weather sensitive immune system, and that was the nature of the area in terms of weather tendencies. Native of Sheffield which benefits from the protective barrier of the Pennine hills, it's something of a logical fallacy that I moved further north to the very bottom of the Vale of York - as it turns out, a notorious cold spot. If there was a prize for accidental poor judgement, I'd be sweeping the board. 

So tonight I have done very little except watch the new Nightwish DVD (serious girlfriend points accrued by me in the present buying department!) and have a long soak complete with my body temperature's version of what my driving instructor used to call "kangaroo petrol". I'm back at work tomorrow so I think I will need something of a quiet weekend to recover, but it's been nice to have my small cookery triumph and to get outside in our beautiful city, even if it was very cold and as far as I can tell has wreaked some havoc on my joints and left me to quietly sit out the weakness in my legs.  

All things considered though I'm not upset with the inevitable bodily reaction. I've had a lovely couple of days and it was really lovely to have my Dad with us. In spite of everything there has been much laughter and good cheer, and that's what Christmas is really all about. We've just managed to get in touch over Skype with Alex's family in Australia before bed too, which was an added treat.

Also, I'm sure some readers will agree that there is something to be laughed at when your Fibromyalgia-riddled hands and wrists make it even more tricky than normal to unwrap presents. If anyone had witnessed my Mum's wrapping skills, they would understand the "more than normal" reference. Having witnessed it on several occasions, I remain pretty convinced she wraps presents with the sole mission in mind of it taking you until the following Christmas to work you way in!

Regular readers will have no doubt noticed a tendency towards references of the geeky persuasion throughout the blog. Alex gave me a canvas Westeros map for Christmas.

I tell you all this as fair warning that I will lay much of the blame with him for leading me astray and encouraging me to stay there.

(Yorkshire, God's own county. And some other bits nobody cares about.)

Whether your celebrations at this time of year are indeed to mark Christmas or any other festival or holiday, I wish everyone the gift of as good health as possible with which to enjoy the festivities, and I shall be back on New Year's Eve with my thoughts on looking forward into the next year of my chronic illness story.

Wishing you all many spoons xxx

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

The most unkindest cut of all

Anyone involved in any of the chronic illness communities on the internet will I’m sure have seen the controversy surrounding the 60 Minute segment of CBS news which aired on 6^th October 2013 in America. The topic was disability. 

Commenting on the severely overstretched disability benefit system in the country, Senator Tom Coburn (a qualified physician) commented that twenty five percent of the files he reviewed at random should never have been granted disability payments, and another twenty percent were “highly questionable”.

Comments were passed on the rising prevalence of disability lawyers, with eighty percent of claimers now having legal representation compared to the twenty percent represented in 1971.

Lawyers Jessica White and Jenna Flizsar were then interviewed about the new onrush of cases flooding the Courts, and the sticking point for many ill viewers came when one of them flippantly declared that many of the cases were for conditions with “subjective symptoms like backache, depression and fibromyalgia.”

Let’s look at that for a second:

Subjective: based on or influenced by personal feelings, tastes and opinions.

So, what they actually came perilously close to saying is that the symptoms are all in sufferers heads based on their “personal feelings”.

(Food for thought. Image from izquotes.com)

Well gosh; we spoonies have certainly never heard that one before. Oh, wait….

Jenna Flizsar (notably not a physician or doctor of any kind) then went on to comment that there is “really no diagnostic testing for it [fibromyalgia]”. The correspondent Steve Kroft stated that it was therefore “hard to deny you’ve got it” and she replied “Correct”.

I’ll start very slowly shall I, for the benefit of their ignorance?

If you bothered to do any research at all - and the fact that you’re a practicing lawyer in the field and you clearly haven’t done should not fill your clients with any confidence in your professional competency – you would find that there is a very real diagnostic for Fibromyalgia. There is no one specific test, granted, but since when has lack of that meant that nothing is wrong?

Diagnostic criteria were set down by the American College of Rheumatology in 1990, introducing the inclusion of pain in all four quadrants of the body (both sides, above and below the waist) lasting for longer than three months combined with the presence of at least eleven of eighteen “tender points” – specific points on the body which cause pain when gentle pressure is applied. Diagnosis of fibromyalgia is often differential – if specific tests have ruled out conditions it can be considered to mimic (most notably arthritis and lupus) then these criteria are to be applied.

So not only are you incorrect, you’re a staggering twenty three years behind the times.

It’s not only recognised in America either. The International Classification of Diseases (ICD-10) compiled by the World Health Organisation firmly classifies Fibromyalgia as a diagnosable disease under the category “Disease of the musculoskeletal system and connective tissue” and the European League Against Rheumatism recognises it as a neurobiological disorder. I could go on, but I won’t.

What angers me most is that Fibromyalgia is estimated to affect 1 in 20 people worldwide. That’s a heck of a lot of people (roughly 0.35 billion, in fact) to be casually dismissed in a high profile manner as either conjuring their problems in their head or indeed using these “conjurations” to flout the system.

Comments about backache really make me despair as well. Not only did I suffer with it myself for years after a particularly nasty fall from a horse (the horse fell and I was pretty lucky not to end up underneath her), but I’ve watched my Dad battle with it on and off for most of my life. When I was a little girl he had a trapped nerve which took nearly two years of physical therapy to release, and then more recently suffered with locked muscles around an undetected joint injury. He walked bent over to one side for nearly eighteen months and sees an osteopath to this day. Both times he really should have stopped working but as a self employed bricklayer couldn’t afford to, and besides which he’s far too stubborn for his own good (I simply can’t imagine where I get it from). My Mum suffers with trapped nerves intermittently with accompanying sciatica too, but she never stops going to work either. My point isn't to criticise those who do cease work because of back injuries - what I wanted to illustrate was that in both cases they were advised that they *should* do so.

(Not fun, and yet another example of something which can't be seen being dismissed out of hand. Image from jhenteopengco.blogspot.com)

Not all people with backache are lazy or making it up and it’s highly insulting to assume so. 

Dismissal like this is why so many awareness blogs, websites and communities exist. I’m newly a member of the Fibro Bloggers Directory and there are 83 of us in just that one list. Over on FibroModem’s FCK Directory (of which I’m also a new and excited member!) there are even more. That’s just ONE condition.

Googling the term “chronic illness blogs” yields over two million results. Not all of those will be blogs, but a lot of them will be.

We can’t all be wrong.

Putting the righteous anger back in her box and wishing you all many spoons xxx

I Choose... The Retired Bridgeburner

Invisible illness isn’t a choice, but I choose… to share my experiences through The Retired Bridgeburner.

(The origin of the name of this blog, and a series for which I will know passion unending for the rest of my days as my touchstone. Image form ebookee.com)

I had to wrestle with myself for a fair while before committing to creating The Retired Bridgeburner back in February of this year, and I don’t think I’ve ever spoken very clearly on the blog about why I chose to do so. Given it’s in-keeping with the theme of this year’s Invisible Illness Awareness Week it would seem fitting to do so now.

Firstly, I’m going to try and explain why invisible chronic illness is an inherently lonely state of being, something it’s worth understanding in the context of the origins of my writing. As a patient suddenly struck down with these monstrosities you find yourself surrounded by people who for good or ill cannot really understand what’s happening to you. It’s not their fault for the most part; for the first year or so I didn’t understand, so how anybody else could do is beyond me. For a while I wondered if it was a quirk of my personality combining with the situation to create this loneliness, but on venturing into the chronic illness tags on Tumblr, finding forums and Facebook groups I soon realised this was a problem almost universally felt across the self-named “spoony” community.

Another thing I soon discovered is that outside of these small boltholes and safe havens most patients were quite reluctant and even scared to talk about their experiences – having at some point been on the end of comments along the lines of “You’re just attention seeking”, “You’re just lazy”, “If you’d just exercise and lose weight”, “You’re faking it/lying/your condition doesn’t exist” etc. and naturally had ceased to talk about it. Rather than put up with unhelpful or abusive reactions from others they suffered in silence.

What I soon realised was that suffering in silence was not acceptable. I understood why patients did, but at the same time I became increasingly angry at the general ignorance which drove them to do so. I began searching around for people who broke this mould and wrote open blogs – my search didn’t come up with nothing, but certainly with understandably slim pickings.

One such blog belongs to my friend Jenny, a sufferer of severe chronic eczema currently going through Topical Steroid Withdrawal in a desperate attempt to aid recovery. You can find out more information about her experiences and about “Red Skin Syndrome” on her most excellent page here.

A little reluctantly at first I came to the inevitable conclusion that if you want to make a change for the better, you have to be prepared to do it yourself.

The name walked into my head pretty much without thought. A play on firstly being ill, but most importantly a reference to the authority resenting, hard-as-nails band of soldiers who represent one of the last vestiges of the “old days” in Steven Erikson’s Malazan Book of the Fallen series. Why? Partially because they’re some of my favourite characters* but mostly because the series became a touchstone for me in the dark days of numerous hospital visits and seemingly innumerable dead ends.   

Armed with a name I started to think about what I wanted to do. It wasn’t enough (for me at least) to write long posts declaiming all the reasons Fibromyalgia and Interstitial Cystitis are not the most friendly of beings. That wouldn’t give patients anything they didn’t already know and would be likely to kill off any interest from healthy people who wanted to find out more. If I was going to commit to this and put the most vulnerable part of me out there on show, I wanted more than anything to be of some help.

Thus the most simple of ideas – to aim for positivity.

I had to tread a fine line with this – going for 100% positive all the time and refusing to acknowledge the rather long list of negatives would be firstly unrealistic and unhelpful and secondly likely to make me throw up. I’m a cheerful soul but I don’t do saccharine and sugar-coated. I wasn’t aiming to be fluffy, whiter than white and universally liked after all; I was setting out try to do something useful.  

(Dovakhitty - my only allowance for "fluffy")

One of the things which becomes apparent in the chronic illness experience is that you never stop learning, and so I decided I’d share the things I learned and any helpful practical tips these led to. I soon found I couldn’t do so impersonally, and regular readers will know the blog is littered with unashamed geeky references, whimsy and my dry and sarcastic sense of humour. I’ve never been a believer in the concept of presenting an “internet persona” which differs from your true person, it’s dishonest and I neither like it nor have the patience to entertain it. I couldn’t be honest about my experiences unless I went about it being nothing less than myself, warts and all.

Now here we are today. The blog has certainly attracted its fair share of nay-sayers which was always to be expected, but from the intended audience I couldn’t have asked for a warmer or more appreciative welcome. She’s just broken 12000 views and to my delight some of the most popular posts are those in which I’ve mentally said “sod it” and waved my “geek girl” and heavy metal fan flags respectively.

So, why do I choose to be open about my most vulnerable side and write The Retired Bridgeburner?

Because it’s important, and every voice attempting to raise awareness and speak against ignorance is another step on the road to wider acceptance that invisible illnesses are real and just as deserving of respect, understanding and compassion as their more visible counterparts.

"Even the smallest person can change the course of the future."

The Lord of the Rings, JRR Tolkien

*If you’ve read the whole series and Fiddler in particular didn’t rend you into tiny little pieces at the end of The Crippled God, I’m sorry to inform you that you probably don’t have a soul.

30 Day Chronic Illness Challenge: Day 18

Day 18: Do you think you have become a better person through being ill? Explain

I have mixed feelings about this. I understand the way in which the question is meant, but I’ve also seen it tossed about very lightly in the past and so it makes me a little wary.

For example, I once knew a person who had something which lasted a fair few painful months and was thankfully fixable. They said very flippantly to me that being ill had made them a better person, but then continued to be the epitome of lack of compassion and sensitivity to the point of preaching to others how much worse their situation was and had been. Despite their belief to the contrary, I don’t think their period of ill health made them a better person at all.

The point of this anecdote? It isn’t something granted purely by the state of being ill as that individual seemed to think. It's not an automatic diversion onto a different path. To me being a “better person” as a result of being ill is about the way in which you look at the world and the things you say being different.

(Yep, sure. Image courtesy of studioknow.com)

Am I a better person? I’m not sure. Certainly there are aspects of the way I think which are different than before. The main thing I could hold up as “better” is that having an illness classed as invisible has without doubt taught me to be less judgemental purely based on what my eyes can see. If I ever feel like dismissing something as untrue, I find myself stopping and considering what I felt like when people accused me of making the whole thing up. So I suppose I’m a little more open minded than I was.

The example most people seem to give for this question is that they’ve become more compassionate. I’m not sure if that’s true of me or not as I think I’ve always been compassionate and ready to listen. I would say that I’m more patient with things I don’t understand now than I was.

As a person I struggle to call myself a “good” person no matter what anyone else tells me – my aforementioned perfectionist streak sets itself squarely in the way – so I have the same problem in calling myself “better” too. Maybe someone will read this and give me a frank assessment!

30 Day Chronic Illness Challenge: Day 14

Day 14: Give five things you are grateful for.

1. Friends and family

You don't realise how important a support network is until the moment you need it. I've spoken about the friendships gained through the common ground of ill health (joining in mad schemes and otherwise...) but I don't think I've necessarily given those who have always been there the credit they deserve. I won't sit and list, this isn't Myspace and we're not 12 any more, but you all know who you are and I feel very lucky to have you. I remember a school teacher once saying to me that we have different friends for different reasons - so whether you're a friend I come to for advice, someone I only see once or maybe a handful of times a year or someone I just want to be silly with, it's all a part of that same support system and you're all equally appreciated.

2. Escapism

If I sat and listed all my go-to books, films and games which make up my own particular brand of much needed escapism, I'd be here all week and you'd all be asleep for sheer boredom. More to the point if you've been reading for a while or read back across my earlier entries I'm sure you'll have formed a pretty good idea of what they are. Suffice to say as something of an introvert I have always needed time to myself to "recharge", and this has become an absolute necessity since becoming ill. Contrary to most peoples perceptions on introverts I'm a very sociable person - I just need quiet time to recover afterwards. Working on limited energy to begin with has made this even more important.

3. Comparative luck in the severity spectrum

I'm sure from reading this blog you've gathered life isn't a picnic compared to when I was well, but in the spectrum of the bigger picture it could be a great deal worse. I'm not bedridden, I'm not disabled and I can hold down full time work and a social life of some kind (albeit with a less than perfect sickness record, but expecting anything else would be foolish). I decided some time ago I could sit back and grow bitter over the negative impact on my life, or I could reflect and be grateful for all the things which aren't happening to me that people I know with the same condition suffer through. I don't think it always comes easy, but perspective is a very helpful tool in safeguarding mental well being - as mentioned in the previous day's question and answer.

4. Amitriptyline

The medicine of the gods as far as I'm concerned. That isn't to say it works for everyone and doesn't have side effects (of which I am thankfully free) but after a week or so of building up in my system I had my first full unbroken night's sleep in around six months. When I woke up in the morning with my alarm I could have wept for joy. It wouldn't be true to say I don't have bad nights any more, and I still have days when I wake up without feeling refreshed in the slightest, but for me finding a way to get a full night's sleep was probably the biggest and most important step.

5. The Retired Bridgeburner

A name combining a play on a love of Malazan, a stubborn attitude and medical retirement, this blog came into being in response to a realisation that a lot of people were too frightened to talk about what they were going through because of negative and hurtful reactions from people around them. I've had a share of that, but I realised helping to stop people from feeling alone was far more important than worrying about the opinions of the ignorant and the petty. Writing the blog has been cathartic and enjoyable for me, but also I find it difficult to put into words how happy I am with its success and the overwhelmingly positive response it receives. I said when I started to write that if I made just one person smile or feel a little bit better then it would be worth every bit of negativity anyone could throw at me.

If my Tumblr inbox, comments on here and personal emails are anything to judge by my whimsy seems to have helped far more than that one person.

Knowing that is almost better than everything else in this list.

30 Day Chronic Illness Challenge: Day 11

Day 11: Why do you believe you have the illness? Bad luck, a higher power or something else?

Well, this certainly provoked thought. I can’t say that I’ve ever given consideration to the “why” of my situation. I’ve been too wrapped up in the “what” to do and the “how” to improve things to ever sit down and give it the time needed.

I don’t think there is a definitive answer for me. Around the time I first started to come down with symptoms wasn’t an easy or pleasant time for me, but we’ve all had plenty of those so I don’t think I can realistically pin it to that. Partly this question comes down to your personal thoughts on the nature of your illness – given that medical science has given us nothing conclusive, I’m sure everyone has their opinion.

I always remember a friend of mine, the lovely Hapfairy who lives here talking about the idea that eventually science may find some sort of underlying cause or factor of predisposition which will unite a lot of conditions given that there are so many curious similarities. I’ve always leant towards thinking there is an as yet undiscovered predisposition towards autoimmune problems, mostly due to the frequent hereditary links of both specific conditions and general autoimmune disease in families. There are autoimmune conditions on both sides of my family but none of them match mine to date, hence my addition of a possible general hereditary link.

However, I’m not a scientist and nowhere near arrogant enough to assume there is no possibility that I’m wildly off track and won’t be disproved in the future.

Luck? It’s not a concept I put much store into. To me you go out and make your own luck, and if you sat back and felt everything was down to luck or a toss of the dice of fate I can see that being a downhill slope to never doing anything. Yes, in some ways it’s bad luck to have developed chronic ill health, but I’ve spoken before in this challenge about the positive things which have happened as a result which may not have happened otherwise, so for me it balances and is about the way you look at it as much as anything else.

And as for a higher power, I’m not a believer and neither divine will nor life after death give me much pause for thought. In summary of this lack of thought I’ll quote something my Dad (self-confessed Tolkien nut) once said:

“I may as well believe I’m going to the Hall of Mandos.... because that’d be a nice place to end up.”

(Ted Nasmith's "Luthien's Lament Before Mandos" - based on "Of Beren and Luthien" from The Silmarillion.)

30 Day Chronic Illness Challenge: Day 10

Day 10: What little things make your life easier?

I have a few little things which help, and they clearly demonstrate that my answer to “weapon of choice” would be heat and as much of it as possible.

 

I have a wheat bag (it’s a bunny, naturally) for the microwave which has the added nice touch of being infused with lavender, and it allows a greater versatility than a hot water bottle in terms of getting to wherever the pain is. I definitely recommend them for sufferers who find heat beneficial.

 

It also proved to have an amusing secondary usage – my cat licks a lot and if I’m having a particularly allodynia-heavy day it’s not a pleasant experience. Enter the Wheat Bag of Cat Deterrence!

 

I also have some heat therapy neoprene gloves which are wonderful on days when my hands are stiff and painful. I’d advise to shop around – I settled on some which are thin enough to allow pretty normal dexterity but still have a close fit.

Other than that it’s just the everyday normal things that I’ve always loved and enjoyed. At heart I’m a person of simple pleasures – if I’ve access to a good book, some music and a hot bath I’m usually pretty happy. I recently chased down some books I read as a teenager which belonged to my Dad – Bernard Cornwell’s “The Warlord Chronicles” – and I’m happily falling hard and fast in love with them all over again.

(It's King Arthur Jim, but not as we know it! Heartily recommended. Image source unknown)

 

Continuing with all my old loves as much as possible seems to be a great help in keeping my mental state fairly neutral in terms of my illness, although I’d never be so dismissive as to say that chronic ill health doesn’t affect you mentally. Of course it does, but everyone’s different.

 

And in contradiction to what I’ve just said,my cat is definitely someone who “helps”. She’s a constant joy and an unconditional companion. On days when I’ve been stuck in bed she tends to come and sit with me, but seems to know not to sit “on” me as she usually would, and as any cat owner can attest to they do tend to make for chaos and hilarity on every possible occasion.

 

So, Misty should get a nod. Also known as Her Most Furry Whimsicality (she’s a very fluffy lady) and some of my Tumblr followers recently named her “Dovakhitty” due to her interrupting Skyrim in continually more inventive fashion. The current method is to sit directly in front of the monitor so I can’t see anything.

 

Alduin might not slay himself, but that’s of no consequence when it’s time for a cuddle.

 

(Dovakhitty strikes again.)

 



30 Day Chronic Illness Challenge: Day 9

Day 9: Have you ever tried any alternative therapies, if so what? Did they work?

No, I haven't. The only non-medication relief I have is a rigorous exercise routine.

That isn't to say I'm completely dismissive of alternative therapy though. It's more than possible that no particular one has quite been "sold" in the right way for me yet. I've always believed very strongly in the idea that if something works for you then it shouldn't be the province of others to criticise it. I'm a firm advocate of "each to their own".

Now before I make the next comment, I do want to add the caveat that I think for the most part the chronic illness tags on all the websites I use are fantastic. They offer a sense of community and act as a hub of support and advice.

However, they really do wind me up when they descend into a "what did you post that suggestion for, it doesn't work for me therefore it's stupid?"

Everyone is different. Everyone with the same condition is still different. It's actually one of the things that has so far kept me from doing one of my traditional longer posts about my exercise routine - I know how unpopular an idea it can be. It's in the list of things I have to work on after the end of this challenge and I will put it together eventually.

There seems to be a reluctance to think a little bit outside of our own personal box in terms of treatment - if nobody ever tried anything new, how do you think treatments would be established? Also, expecting a one-size-fits-all answer is somewhat foolish - if we had one, we'd all be cured by now wouldn't we?

I don't subscribe to the idea that treatment is static - in my mind it's a fluid and progressive process built on finding new methods and trying new things under guidance. Just because I haven't found an alternative therapy which has piqued my interest doesn't discredit the many people who have found them beneficial, and neither does it mean I won't possibly find one in the future.

Finally in summary, because it seems to be the one I'm most frequently asked about, I'm just not bendy enough for yoga. Important limbs are likely to snap and come off if I try most of it....

(Nope, I'm sorry but nothing in the world will convince me my legs will ever do that. 

Courtesy of kyrinhall.com)