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

Thoughts of a Jellicle Cat

("Do I actually see with my own very eyes, a man who's not heard of a Jellicle Cat?"
Cats, London's West End 1998. Image from deviantart.com)

For the sake of amusement and a bit of good cheer for the festive season (Bah humbug!) I realised there is one individual in my life who’s viewpoint does not get an airing.

Enter Her Most Furry Whimsicality, who’s taking over the blog for the week to give you a cat’s eye of view of life with a Spoony on your staff.

Day one

It is the weekend and the humans have been asleep for far too long, it is past my breakfast time. Mum needs to sleep a lot, but this is unacceptable.

Apparently my walking up Mum and sticking my claws in every so often isn’t something she enjoys. You would think they would appreciate my taking over the duties of their alarm which failed to go off as it usually does.

  

Day two. 

The humans are watching Doctor Who. I approve of this episode as there are cat people. However I am not sure what is going on with their headwear, or why they insist on walking on their back legs alone.  If the Doctor and his companion were my staff there would be none of this running off to save the world nonsense. It is our duty as superior beings to keep our humans in line. Their failure to do so is disappointing.

Mum is sitting under a blanket again. She doesn’t seem to understand that blankets are for sleeping on.  If she grew fur she wouldn’t get cold.

Day three 

Mum is not well again. Even for a human she is sickly; I would think about acquiring new staff except she’s been around for a while and she isn’t entirely without merit. Dad asked me why I hadn’t been looking after her. The fact I was asleep in the chair moments before is entirely irrelevant. He was not around to see the events of this afternoon.

I spent a good hour defending Mum from the Red Dot of Doom. Someday I will figure out why she was waving the grey stick in her hand whilst this was going on. This is why cats are superior to dogs – dogs bark at an intruder, we are cunning enough to sneak up on it silently. One day I will catch it!

Day four

Dad is out and there is only Mum in the house. She has the nerve to ignore me in favour of the light box on her desk, with the rows of buttons and “mouse” attached to it (it doesn’t look like any mouse I’ve ever seen). This is something she does every week on the same day, and this is perplexing. 

I will trick her. She is always cold so I will jump on her lap in pretence of a cuddle, within easy reach of the rows of keys which I will then sit on. I don’t understand why this provokes exasperation – she should have been paying me attention in the first place and I am merely arranging things so she doesn’t have to move in order to do so. I am entirely considerate of the fact Mum is not a human specimen at the peak of their already limited capacity. When it suits me to be.

(Naturally!)

Day five

Mum is exercising. I do not understand why humans do all this moving to and fro and on the spot, getting sweaty and out of breath. When I want to exercise I sneak up on and chase something I want to eat. Now she is bouncing on one foot and kicking the other behind her. How strange.

I really like the look of that spot by Mum’s left foot. The pipes are under there and they are warm. I think I’ll go sit there. Surely the humans do not need me to announce my presence for them each time I want to sit somewhere else.

.... she fell on me. There are no words in Elvish, Entish or the tongues of cats for how embarrassing this is.

Day six

The humans are playing a with some sort of board, and Mum is wearing the the gloves that feel funny. Apparently they keep her hands warm (as if I have not already expressed that fur is the answer). There are tiny people on the board and the humans keep moving them.

.... my joining in was not appreciated. Apparently "it messed up the game". If one of them had explained what "chess" is then the confusion could have been avoided. When I chased one of the offending little people across the carpet, Dad said "Give me the rook back!". It looks nothing like a bird, silly human.

However, I have my chair back!

Day seven

Both the humans are using the light boxes again. This seems to be what they do when they are too tired for other things. This is most perplexing. I will have a look at the boxes up close; I need to see what all this unnecessary behaviour is about.

Mum’s box has something to do with a ring, a made up land where there are clearly not enough cats and something about not simply walking into a place called “Mordor” on it. I fail to see the entertainment value in this. I shall inspect Dad’s.

Hmph. This is somewhat similar. There are lots of little humans running about with fancy swords and talking about “guilds” and something called “loot”. My staff are very stra-

.... that creature on the light box just tried to run away! You leave me no choice, box creature. Your doom is at hand!

... there is an invisible force field stopping me getting into the box. My nose hurts.

Eight out of ten, Misty. Back to the day job!

This is my last post before the New Year, so I wish everyone a lovely Christmas and New Year, and as always many spoons xxx

Hips Don't Lie

I thought a follow up to Shut Up and Dance was in order now that I’ve been using the workout DVDs for a couple of months. I appreciate exercise is not the answer and indeed not even an option for everyone, but for those who are interested and able a bit of a first hand review can’t hurt.

To set the scene a little, I took a tumble from a horse aged 13 which did some fairly extensive damage to the muscles in my back, and despite being just about fully recovered I never regained previous levels of flexibility. I also have a twisted pelvis - I always rode with uneven stirrups to compensate for the fact my left hip at rest is naturally somewhat in front of my right. It isn't particularly visible and can only really be spotted if I’m lying on my front, in which it becomes obvious that my right hip doesn’t touch the surface I’m lying on.

All in all I haven’t had particularly fluid hip movement for some years and my flexibility is patchy to say the least. Dance therefore does not come all that naturally, not in the least bit helped by the fact I’m easily confused if my feet have to do something entirely separate to my hands and arms.

You only have to bear witness to how many times I walk into things to be assured that coordination is not my strong suit. It turns out that even the rather strong deterrent of severe allodynia cannot help me to be spatially aware of the furniture; in answer to the usual question yes, it is indeed more than big enough to see. Go away with your logic.

(www.hangbag.com)

I picked up the two Strictly Come Dancing exercise DVDs directly from the BBC website for £8.99. Amazon and elsewhere sell them separately for about £5 each.

So, in starting out I swiftly found that if you’ve never done any sort of formal dancing before, then of the two DVDs Flavia Cacace and Kelly Brook’s one is probably going to be the best one to start with. Naturally not knowing this I did it the other way round and swiftly stared my own towering ineptitude in the face. Not to be deterred I kept going for a few weeks with the other DVD (Karen Hardy and Erin Boag) and managed to get three of the five routines into rough shape (cha cha, salsa and jive). Flavia and Kelly’s DVD has clearly been tailored more with non-dancers in mind and in treading the line between aerobics and dance probably falls slightly in favour of the former.

A key point – make sure you have plenty of room. Our living room and kitchen are open plan and so I have the width if not quite the length (Must. Learn. To. Take. Smaller. Steps.)

Is it working? Very much so. It’s a much higher cardio workout than you might think and really does move everything – which is why it’s important to do the warm up and cool down routines, a fact reiterated several times by the dancers and in a recorded disclaimer before the menu screen loads. It was extremely daunting at first but now the steps are starting to make more sense (even sometimes with accompanying arm movements!) and I can remember enough to drop the instructional element most of the time.

(Don't be fooled by the butter wouldn't melt expression....)

One thing I discovered relatively early on – do not have your cat in the room when jiving on pain of near certain death. You’d think after thirteen years of watching me bump into and fall over everything in reach Misty would be wise to the fact that me balanced and levering up and down on the ball of one foot whilst kicking backwards at waist height with the other is far too precarious a situation to venture close.  Feline logic clearly leaves a lot to be desired and the situation ended with me in a heap on the floor tangled with the cat, who then proceeded to walk all over me wearing a “This is entirely your fault!” expression.

Pleasantly my flexibility is also improving a fair bit, including my hips which now occasionally manage normal human function. A secondary concern though it may be for me in terms of exercise, I can’t complain that jeans I bought fairly recently are starting to be a little roomier too.

The biggest recommendation I can give though is that it makes me smile. Having never danced like so many of my contemporaries as a child, I didn't expect to pick it up with ease. More surprising still was just how much I enjoy it. The dancers on both DVDs call salsa “feel good” and it really truly is.

And then there’s the music. I’m not generally a fan of pop music, but the tracks for all the workouts are brilliant choices to suit the dance routines. I never thought I’d find myself writing in praise of Black Eyed Peas and Shakira, but credit where it’s due – they’re brilliant songs to dance to.

All in all I’m really pleased with finding these DVDs. I can foresee this taking quite some time to start feeling stale (despite my doing the workouts about three times a week) and I’m so pleased to find that the potential for flexibility and full movement was there in my joints after all, they just needed the right exercise to encourage it.

Hips Don’t Lie, eh Shakira? It appears mine do.

(What I lack in technique I make up for with enthusiasm!)

Wishing you many spoons xxx

Bad Wolf

(www.walesonline.co.uk)

Some quick context: the other half bought the box set of Doctor Who containing all the episodes of the Ninth and Tenth Doctors. Before said box set's arrival I'd seen a little bit of David Tennant's Doctor and the odd episode of Matt Smith's but never really sat down to properly investigate the show any further.

All I can really say about the transformation from uninitiated to Whovian since then is that I'm so pleased I discovered it in time to fully appreciate the 50th anniversary special The Day of the Doctor, which was just an all round amazing piece of TV. A tip of the hat, Mr Moffatt.

Discussing the show with a couple of colleagues at work prompted the question of what the one thing would be that you'd go back and change in your life if you had a TARDIS. Whilst I sat listening to others suggestions and not commenting, someone asked "Well surely you'd make yourself well again?"

After a little time I answered "No I wouldn't."

The thought process of why took significantly longer to piece together, but I was completely certain nonetheless that given the opportunity of such a course of action I would refuse it. Politely, but refuse all the same.

This summer marked two years of adventures with Fibromyalgia and Interstitial Cystitis, the twin personal demons I've grown to know. Setting aside the positives which have risen from that period of time, just the thought of how indescribably different the last two years would have been without my falling ill is in some ways a terrifying one in itself.

The whole of time and space may not rest on those threads being unpicked, but it would be an incredibly different experience for me. I wonder if this is the mark of beginning to find true acceptance; just knowing I no longer wish to alter things.

(Yep, this was me. I probably should be ashamed of how terrible the pun is.)

Those experiences allowed for the eventual creation of The Retired Bridgeburner, and formed the doorway into a number of truly wonderful communities here on the net. My stint as an admin for Chronic Illness Cat has been something incredibly rewarding and it's a page I'm quite proud to be a part of. There may be no cure and no ultimate answer, but it's good to feel a part of something which in many small ways does some good.

Every second of your life has led to and contributed to the person you are now, just as every instance of mine has done the same for me. I'm quite aware of the fact that those two years, however difficult and frightening they were at times, have contributed positively to me as a person. Part of that experience softened some edges and ultimately re-wrote the song of the way I view so much of what is around me. It might be true that I'm too much of a perfectionist to ever rest easy with everything, but still I rather prefer this new and tempered music.

Granted, I've given plenty up in that time be it people, activities I'd found enjoyment in and indeed to some extent an old identity which no longer fitted the new reality. If I take emotion out of play I realise I'm actually quite lucky, because for everything I lost as a result of Petunia's appearance I have gained something more precious, even if it was just a better appreciation of the things I had.

I found a new joy in my creative outlets be it sketching or writing because I appreciated them that much more for their limitation at the hands of my health. Live music has more impact because of the hard work it takes to hold sickness at bay just enough to be able to attend. Time with friends who live further afield has become much the same also - it's harder to take something for granted when it can knock you flat for a week afterwards.

I've always been a creature of passion and emotion which runs close to the surface - I've poked fun at myself in a previous post already for how easily I react emotionally to books, films and the like - but I get far more pleasure out of those simple things now than I did before, when I rarely took a breather from dashing about at top speed to fully appreciate them. As such, those emotions run closer to the surface than ever, and the attachments are stronger for it.

The new one as I'm sure you've guessed is Doctor Who. It's been wonderful to discover the show and find it to be far more emotionally driven and on occasion infinitely more deep thinking than I ever would have given it credit for. I've shed tears a few times and I cheered out loud at Peter Capaldi's unexpected appearance in the anniversary. Being able to get that caught up in the moment is a real joy.

So, what would I change if I had a TARDIS? 

(It'll be a long time before this is knocked off the spot of my favourite TV moment. Image courtesy of bbc.com)

Nothing, really. Except maybe to pop back and have tea with Professor Tolkien.


If you're wondering at the title, Rose is my favourite companion. And as often as I'm prodded, I still refuse to choose between Ecclestone and Tennant for a favourite. I love them both equally.

Does anybody have any thoughts on this? Would you change your health given the chance, or are there things you appreciate and would want to remain the same?

Wishing you all many spoons xxx

The Silent Force

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

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

With me so far? Good.

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

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

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

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

(Maybe we should all come with appropriate signage? Image from chronicillnessproblems.tumblr.com)

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

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

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

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

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

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

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

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

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

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

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

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


Wishing you all many spoons xx

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

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

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

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

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

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

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

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

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

(Heh, painfully true. Image from booksdirect.tumblr.com)

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

Erikson puts it better than me:

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

Fuck all that.

Well, see what happens when you get me started on this?” 

Tor.com, August 2012.

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

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

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

Long live The Malazan Book of the Fallen.

“And now the page before us blurs.

An age is done. The book must close.

We are abandoned to history.

Raise high one more time the tattered standard

Of the Fallen. See through the drifting smoke

To the dark stains upon the fabric.

This is the blood of our lives, this is the

Payment of our deeds, all soon to be

Forgotten.

We were never what people could be.

We were only what we were.

Remember us.”

Untitled – The Crippled God, Steven Erikson

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

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

Wishing you all many spoons xx

*To my surprise, I received one.

Find the Real

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

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

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

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

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

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

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

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

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

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

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

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

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

(“I’m-going-to-pretend-I-don’t-know-about-the-unachievable-bar-men-and-women-will-hold-you-to-despite-how-much-or-how-little-makeup-you-choose-to-wear-and-I’m-going-to-invalidate-your-choice-regarding-wearing-it-because-what-I-personally-find-attractive-should-be-law!”

Albinwonderland being brilliant once again.)

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

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

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

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

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

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

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

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

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

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

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

Wishing you all many spoons xxx

Unpretty

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

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

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

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

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

(Sometimes even I have to laugh at how British I am. Image from www.panicposters.com)

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

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

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

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

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

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

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

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

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

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

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

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

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

Wishing you many spoons xxx