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