Wrecking Ball

We know that come tomorrow

None of this will be here

So hold tight to your anger, hold tight to your anger

And don’t fall to your fear.

Bruce Springsteen – Wrecking Ball

I wrote not so long back about my new fitness regime and how it had begun to help with the various Fibromyalgia symptoms. I’ve been ill for too long to have expected lasting improvement – chronic means chronic, after all – but I would have liked things to have lasted a little longer than they did.

The frustrating thing is just how much better I became. I had more energy than usual and whilst the usual pain symptoms were still present I certainly felt the sense of well being that comes with being generally fitter. Though still ill and having rough days I was significantly more bright-eyed and bushy-tailed for want of a better phrase.

However, for the last couple of months I’ve barely been able to exercise at all. The workout DVDs are gathering a fine layer of dust in the living room and don’t look like moving soon. I have attempted to break the cycle a couple of times, but on both occasions ten minutes into the workout I was overcome with the feeling of needing to be violently sick. This didn’t happen but it would be idiotic to try and push past that sensation.

I’m not completely immobile – I’ve still been getting to work and pottering about in the evenings and at weekends but I miss the sense of structure and purpose. Taking up something like the 30 Day Shred again would be so ridiculous as to be laughable at the present time. I just don’t have the energy and attempting to fight this, as I’ve covered, does not lead to pleasant results.

I first noticed this oncoming phase when we went on holiday to Wiltshire at the end of June. We were blessed with sunny and hot weather but I think this further highlighted the problem – it was the sort of muggy heat that saps energy. Whilst we had a lovely time and went to some really lovely places – we’re both history nerds, and Wiltshire is the sort of old the dinosaurs had already forgotten about - I struggled with energy constantly. In hindsight I managed to do quite a lot considering, but it was never without the feeling of needing to collapse in the shade fairly regularly. Still, it was nice to get away and I’d go back to the area in a heartbeat.

(Not giving a monkey's at Barbury Castle - right up until my knees gave up a couple of hours later anyway.) 

So, the break did not improve things as you would usually expect it would. I’ve then been in the process of changing jobs again due to circumstances beyond my control and I suspect this has piled on the pressure on top of my already depleted resources. It never rains and all that.

So, at the moment I’m walking eight miles a day with a couple of train rides in between to get to work. I probably don’t need to illustrate the fact I’m back on the routine of come home in the evening, eat, sleep and repeat. The walk will have to do as my exercise for the foreseeable future because short of a miracle I will be summoning neither the energy nor the will to do anything further. For now, I give up.

Giving up. What an unpleasant phrase. However, there comes a time when you have to be sensible and recognise the difference between giving up because you can’t be bothered and conceding defeat because it’s the most sensible and healthy thing to do.

I am slowly coming round to the idea that I think my general health and fitness will work in cycles like this. For every phase of relative good fitness and energy levels I’ll have a corresponding low period. It’s undeniably frustrating because it means I can’t build fitness beyond a certain level before I have to let it slide again, but hopefully with perseverance it will creep up a little each time.

I really could moan about this, but on reflection I think the important thing to remember is that I could be without those good phases at all, and plenty of chronic illness patients are. Right now, it’s a bad patch and doesn’t look like letting up any time soon. Maybe Petunia didn’t like Stonehenge and Avebury very much (tasteless swine).

However, I had a phase of a couple of months where I was unusually well preceding this, and they’ve occurred infrequently before. That means with any luck it will reoccur again. I’m hopeful that once the situations of the job and the new house are sorted out I might settle down a little bit, but if I don’t then so be it. Petunia is as Petunia does after all.  

So in terms of my fitness, slow and steady will jolly well have to win the race, and as for those elusive "well" periods, they provide something (however tenuous) that can always be looked forward to. I'll take my small victories gratefully.

What do you do in your corresponding good/bad phases? How do you approach the fact that your health never stays the same?

Wishing you all many spoons xxx

Where words fail, music speaks.

A Hans Christian Andersen quote for you - let it never be said that I settle for predictable post titles!

I've been meaning to write a post about music as a form of relief for quite some time but I could never find a frame in which to discuss it. Music is what it is, after all. It's often a deeply personal experience and so it can be difficult to define to another what a particular piece can make you feel.

I attended a concert I was busy getting excited about in my New Year post last week, and this crystallised exactly what I've been wanting to say.

Music is a relief because it can be a complete emotional catharsis when you find the right pieces and songs.

The concert was Trans-Siberian Orchestra, in only their second ever show on British shores. In 2011 they graced London with their Beethoven's Last Night show, and this time they were returning for two dates with a "never before seen Europe-only show" which promised to reunite elements of the band's past, present and future.

(Granted this is at a much bigger show in the USA, but I'm sure you get the gist...

Image from blogs.tennessean.com)

For those unfamiliar, TSO's past is most notably the heavy metal band Savatage, who have remained on permanent hiatus since their final summer festival appearances in 2002. The partner in crime and I spent most of our journey over to Manchester trading off which Savatage songs we thought would be played - whilst I love the Savatage I've heard, I'm not so well versed as he is as my first love is given to the TSO project. At heart I'm anyone's for big silly stage musical-esque goings-on. We were also meeting friends there, so it had all the makings of a very enjoyable night.

In describing exactly what TSO is I come up against some difficulty. Put as simply as possible it's a five piece rock band, a lead violin virtuoso, an orchestra and a choir of exceptional singers most of whom also take solo spots during the show and wouldn't be out of place on the West End or Broadway (where some have actually performed). There's also a narrator in the form of the wonderful Bryan Hicks, and it's all performed in the manner of an Andrew Lloyd Webber musical. Oh, and there's classical pieces played as a mixture of the band and the orchestra. And pyrotechnics. And lasers.

They provide the perfect example of catharsis for me. It was fortunately or unfortunately dependent on view point a fully seated gig, although not without plenty of attempts by the band to get everybody on their feet. Some of the Savatage lends itself to nothing better than hair-whirling dancing, while plenty more of both theirs and TSO's back catalogue calls for singing along at the top of your lungs. At the other end of the scale was the heart-rending ballad Believe, performed with astonishing emotion by Robin Borneman. That marked the point in the night when both myself and Alex were reduced to tears.

He'll tell you the room was full of sand and someone in the row in front was chopping onions, but you should never believe anything he says!

(Robin "You-don't-need-those-heartstrings-anyway" Borneman, making Believe just that little bit more magical for me at least. Image from Youtube.com)

After that potent mixture of emotion throughout the night I felt almost scoured clean and completely drained, but in a rather more wonderful way than I would usually mean with that word. Seeing Bruce Springsteen (a childhood dream) in the summer of 2012 was a similar experience, as was watching Les Miserables in the West End for my eighteenth birthday.

That's the ultimate power of music for me - or a mixture of music and words in the case of songs - in the hands of the skilled it shines and can touch most everyone in some way, be it big or small. What's not to love about that?

On that note, without realising I've been slowly collecting a bunch of songs together over the last few years into a playlist on Youtube. I stick it on in the background when I'm writing for TRB, pulling admin duty for the brilliant Chronic Illness Cat page or just generally mucking about doing anything on the computer or in its near vicinity. I won't list everything in it, as it currently stands at 66 videos, but without consciously deciding to I've essentially put together my own emotional range of songs and I'll give a taster below.

• Objects in the Rear View Mirror May Appear Closer Than They Are - Meat Loaf

Score one for the "tears" category. I don't mean it makes me sob every time, but it's just in that area of emotion. More a close-eyes-and-listen song. 

• Nord Mead - Miracle of Sound

Because everyone wants to be a Companion, "drinking mead in the halls of Whiterun". A silly offering from Miracle of Sound inspired by Skyrim - I actually tend to stop and watch the video for this one, just for the bloke at the beginning dancing about next to the dragon skeleton. If you're a Skyrim fan, I highly recommend this as a bit of fun.

• Gutter Ballet (live, from Ghost in the Ruins) - Savatage

Because it's wonderful, that's why. Score for the "Oh dear lord this is ridiculous" category.

•  Carmina Burana - Trans-Siberian Orchestra

You didn't seriously think they wouldn't make the list did you? Carmina Burana, possibly more easily recognised as the O Fortuna chorus, and one of my favourite pieces of music ever written.

• Icewind Dale Main Theme, Skyrim "Dragonborn" Theme - Jeremy Soule

Both excellent games and both pieces of music I love - what a pleasant combination. 

• We Take Care of Our Own, Born to Run (Live in Madison Square Gardens) - Bruce Springsteen (and the E Street Band)

If you need me to explain why, you haven't been paying attention to the rest of this blog. Correct this immediately!

• Into the West (The Return of the King OST) - Annie Lennox

Tears. I don't care a bit.

• Jerusalem - Bruce Dickinson

A stop, close eyes, and if alone belt out at the top of my lungs sort of a song (so potentially draining in more ways than one!)

• Nessun Dorma (live) - Russell Watson

I don't like everything Mr Watson sings, and obviously it' not the definitive version, but it's a beautiful song and a rather cracking version in my opinion. 

• Time to Say Goodbye (live at London's Colosseum) - Il Divo

Because I gave up having any sort of street cred a very long time ago. It's another of those songs that if I'm in the right mood and can make me well up a little.

• Fighting Trousers - Professor Elemental

I actually don't like your tweed Sir, as it happens. Perfect when I'm in need of a good giggle. 

I recommend this, if music is something you find relief in. Find the songs that make you laugh, the ones that make you cry, pieces of music that make your soul soar even if you don't know why, and the odd thing that just makes you stop and think. Stick them all together, press shuffle and enjoy!

In further music related tomfoolery, I'm slowly teaching myself to sing. Slowly. The ability as it turns out has probably always been there, it's just never had any work put into it as I have spent many years soundly convinced by others that I was hopeless. With some kind reassurance that I am in fact not so, I'm getting there. Let's call it my pet project for this year. 

My main problem at the moment is letting go of my inhibition to sing loudly enough to not fall slightly flat of the notes. It's getting better, and I'm beginning to find where my voice comfortably sits, although I'll be damned if I give up practising to the likes of Kamelot and Serenity just for the sheer fun of it. I'm currently teaching myself Nightwish's Eva, for those who know it. 

The point that I've come to realise is that you don't actually need to be a good singer to enjoy the release of singing along to your favourite pieces, and whoever can hear you can go whistle. I'm finding that singing, rather like dancing, is an incredible release of any pent up emotion and perfect for de-stressing. You don't need to be hugely talented in order to enjoy that release, and you don't owe it to anyone to meet an invisible standard.

And don't let anyone ever tell you otherwise. 

Does anyone else have specific "go to" music, or do you use music as a form of relief in any way?

Wishing you all many spoons xxx

The highway's jammed with broken heroes....

Excuse me while I casually hum the rest of Born to Run before I think about completing this post.

If you hadn't figured out I'm a huge Springsteen fan yet, then you either haven't been reading enough of the blog (disgraceful) or haven't been paying attention (only marginally better).

I've been thinking about the practicalities of driving and the need for a car in terms of a post for The Retired Bridgeburner after discussing the topic last weekend. My original plan on moving to York was to let the car go - I thought I could get along well enough without it and it would be saving plenty of money on insurance, tax, petrol and unsightly repair bills. The lack of those unsightly repair costs alone would probably also have done wonders for my nerves.

Yup, KvltKa is nearing the end of her road life. Fairly obviously she's a Ford Ka, and she manages to be a particularly fine example of all the things wrong with the model. Being the bottom of the hierarchy the parts are comparatively cheap but don't last, and at ten years old she's very definitely succumbing to the model's infamous issues with rust. However, I grumble affectionately. I really do love that car.

(KvltKa: raised by wolves in deepest darkest Norway, master of all things ice and snow.)

Upon moving to York in the middle of what proved a long winter by British standards I soon found that the car was a necessary evil. Whilst I do relatively well throughout the months when it's warmer, the Fibromyalgia does not enjoy the cold. Even a fifteen minute walk to the shops for supplies was beyond me on far more days than I'd like to admit to. I forced myself outside as much as I could (stubborn Northerner that I am) but I was painfully aware that certain necessities would have been impossible had I not kept hold of KvltKa.

As I'm sure many readers will be aware, the act of driving itself can be fraught with issues. If I'm completely honest I have the potential to be a proper petrolhead - I love driving. That is, I love driving when I can drive properly. I crave nothing more in the world than a great big windy 60 road with nobody else on it. As many of us have complained and will do so again: other drivers tend to take the fun out of driving.

However, I'm now far more reluctant to drive alone than I ever was before. I've had a couple of very painful episodes whilst driving - mostly due to being stuck in traffic and unable to stretch already overworked muscles, but it makes me tend towards having a passenger where possible. I'll drive familiar routes alone - between here and both parents' houses, for example, because I have all the places I can pull over and stop if necessary memorised. The necessity of travelling on new routes tends to find me sitting around doing much Googling and much reading of the Ordnance Survey to try and alleviate the necessity for panicked searches for stopping points.

Sudden movements by other cars can set the edges of my sensory overload off - I err on the side of caution and I'd rather cover my back in case the idiot *is* going to pull out without looking than choose to not react and suffer the consequences. However, whereas this is all normally a part of hazard perception and nothing to get excited about, these things can now make me jump and I remain jumpy and on sensory-overloaded edge for the remainder of the trip. I've never been a perfectly even-tempered driver, but this sort of thing certainly tends to make me more irritable.

I have been known to utter a few of the sort of "GET OFF MY ROAD!" curses which would make Jeremy Clarkson proud.

I try to combat this by leaving sufficient "non-driving" days in between necessary longer trips. Generally the worst of the overload comes at the end of long journey when I'm starting to get fed up and a little tired. I know my own energy levels well enough to know the difference between this sort of tired and the tired which requires me to pull over, but the former does tend to be the forerunner of jumpiness and a feeling that the cars moving around me are coming too close too fast.

I'm learning to recognise this and  combat it slowly. I'm quite proud of my driving and it's something I like to feel I do well, so I treat this as a new obstacle to learn my way around effectively - it keeps me on an even keel with it rather than becoming upset at the problem.

(Current favourite driving music... and the windows mean that nobody knows how ineffective my singing along is.)

I try and remember to always have something to drink in the car (lesson learnt from my disastrous trip mentioned in Fate is Inexorable) and I'm fond of driving with music on. Whilst it doesn't distract me from driving (I rarely change CDs whilst driving, that's what passengers are for) it can distract the sensory build up a little bit. It's not for everyone, but I've found singing along to something (thank heaven nobody but me has to listen!) can not only interfere with the build up of overloaded senses, but can also prevent you from getting too worked up too.

However, following a particularly sluggish trip back down the A64 this morning due to traffic, the next dozy fool who doesn't pay attention to what's happening in front is in danger of receiving the sort of language my parents (and many friends) don't think me capable of.

There's also the fact that lots of driving leads to lots of arm and leg ache. It's a sad inevitability (and believe me, my car steers very lightly indeed) but it's very much the lesser of two evils on a day when walking would prove just as problematic if not more. In my own experience I've never had the episodes of disorientation while driving that I know others have experienced, but if they ever do start to happen then it's going to require a lot of thought as to where we go in the future on the subject. Long may the lack of such continue.

I might not be over fond of the need itself, and it causes problems of its own also, but I found personally that a car was an invaluable ally in my independence and being able to still do as much as possible. Even if it is old (er, "experienced"), was raised by wolves and doesn't understand clouds.

(Full marks if you clocked that reference! Image courtesy of hayabusa.org)

Has anybody else found themselves in a similar position? Do you have any issues with driving? Feel free to open up discussion!

Wishing you all many spoons

....part two.

So, my post this morning attempted to put into context exactly what suffering from chronic pain can be like in the most extreme cases. I'm not always (thankfully) as bad as the scenario I described, but if you're going to try and make people think I see little point in giving a "best case" scenario. Pulling the punches will not yield the desired result. 

Coping, however? Now there's a thornier issue. How we all cope is as unique as the individual people we are. 

Some days there is literally no other option but to go to bed and try to go to sleep, in the hope sleep will yield relief and be the healer medical science claims it always is. I personally have no prescription painkillers for my Fibromyalgia, and I'm sure I don't need to tell anyone reading this blog that paracetamol and ibuprofen are in no way effective whatsoever. Thankfully though I am sometimes able to sleep off my flares.

Today has been a "recovery day". For me this means I've overdone it the previous day, or possibly it's a general build up over a few days of activity. Today is the result of seeing a friend from out of town for lunch, and then going out a second time to visit another couple of friends and their gorgeous new ten week old kitten (who am I to resist things both small and furry?)

On a recovery day, I do as little as possible. Today has been spent mostly curled up under a blanket with my wheatbag and a book wearing my heat gloves. The pain hasn't disappeared, but forced inactivity seems to have kept it from degenerating to the point of being incapacitating. I've done a little bit of cleaning (followed by a few hours rest) and made a crumble (again followed by rest and my partner cooking dinner instead of me). When I've finished typing I'll be having a soak in the bath (I have the water as hot as I can stand it, this seems to help me a little) and going to bed early.

How to cope with constant pain on a general basis though? I'm afraid I'm of little help in this regard, as I really do just grit my teeth and get on with it - because I'm not at the severe end of the spectrum in which sufferers can be completely bed bound, I can manage this way. In an odd way there's a small amount of gratitude here - I've discovered a situation where my stubborn nature is a help and not a hindrance. Who knew, eh?

I often find myself trying to mask my pain and discomfort for the sake of others, and recently I have been trying to break myself out of this habit. A quote I came across on Tumblr earlier today sums up the reasons I try not to do this any more:

“It’s okay to not be okay. It’s okay to hurt and cry. It’s okay to feel sad and wounded and angry. It’s okay to feel these things simply because you’re feeling them. No matter what anyone says, your feelings are inherently valid. They’re real to you, and therefore they’re important and deserving of being expressed. You’re feeling this hurt for a reason, and in order to heal, you need to give yourself permission to feel your feelings. You don’t have to hide your pain. You don’t have to put on a happy face or bury your tears. You don’t owe anyone a smile or an explanation. But you do owe it to yourself to be true to your feelings. You owe yourself the chance to heal. Don’t let anyone’s judgement rob you of that — including your own."

- Daniell Koepke

I realised I was apologising constantly when I needed to ask someone to help me or to do something for me, or saying sorry if I needed to leave a gathering early or couldn't make it at all in the end. My eternally understanding partner and some very good friends all sat me down and took me to task for this, reminding me that they do know what's going on and that they don't need an explanation or an apology from me. It's actually more difficult than I thought to stop myself - I'm a people pleaser by nature and it seems to be my almost automatic setting to feel I am a burden. I am slowly working my way out of this - trying to once a day just ask for something without explanation or apology, and then build up from there.

There are certain everyday tasks for example which my joints cannot cope with any more. I enjoy cooking and am completely unable to grate cheese - my wrist can't handle the movement even for a short time. I'm quite stubborn about chopping and try to do this myself, slowly coming to accept that it takes me far longer than it used to. I sometimes have to stop myself mid-flow of frustration and remind myself that nobody's going to die if chopping vegetables for my ratatouille takes three quarters of an hour instead of ten minutes. It's OK. No harm done. Occasionally though, I give in and ask someone to help or possibly finish it off for me.

Whilst on the homey subject, ironing has to be done in small bursts with rest periods - believe it or not, even a half full iron becomes too heavy and subsequently painful otherwise. Cleaning can be much the same, although we do now have a very light hoover which I can move with relative ease. It's taken some firm mental re-training (still ongoing) for me because I'm a person who likes to clean the whole place in one burst - that simply isn't possible any more. At the moment while I'm not working I'm setting myself a one room a day target. This is the reverse of a normal target - I don't have to do one room a day, I'm simply not allowing myself to do *more than* that one room if I do any at all. 

I also essentially kick the rule book every so often. I suspect this wouldn't be possible for those more severely affected than myself - according to my doctor I'm about "middle of the road" - but I find it helps from a psychological point of view to pick a good high energy day and:

I have to be careful - this only really works in a small burst and if I have time for recovery days afterwards. It might not be for everyone, and I suspect it isn't for most. Psychologically though, I've found this is good for me. It's a part of the whole makeup of the way I look at my condition. She's called Petunia - an unfortunate comment on my part of "it's like having a stroppy teenager inside you" led to the teenager being named by a friend, and this then stuck. In my own private thoughts I treat it as a game which nobody but me is going to win. I call her names and I direct some incredible sass her way. Each small victory of hers is merely the battle and not the war. With this in mind, "kicking the rule book" is effectively giving her a slap in the face every now and again. She needs putting in her place, after all. 

To this effect I have some touchstones - they can be quotes from just about anywhere, song lyrics or just about anything which amounts to a source of comfort. Some of mine I have never made exact sense of when or how I came to link them to my condition, but if it ain't broke then don't fix it.

One example is the Bruce Springsteen song Wrecking Ball, in particular the following lines:

Yeah we know that come tomorrow none of this will be here

So hold tight to your anger, you hold tight to your anger

Hold tight to your anger, and don't fall to your fears.

Now when all these steel and these stories, they drift away to rust

And all our youth and beauty, it's been given to the dust

When the game has been decided and we're burning down the clock

And all our little victories and glories have been turned into parking lots

When your best hopes and desires are scattered to the wind

And hard times come, and hard times go

And hard times come, and hard times go

And hard times come, and hard times go

And hard times come, and hard times go

And hard times come, and hard times go

Yeah just to come again.

Bring on your wrecking ball

Bring on your wrecking ball

Come on and take your best shot, let me see what you got

Bring on your wrecking ball.

Something now firmly burned into my memory was my being lucky enough to see Springsteen and the E Street Band in concert last year. Having been in A&E all the previous day, making it to the Etihad Stadium was just that little bit more precious - I was fulfilling a childhood dream I had never thought possible. When the opening notes of the song were played, I wept with a smile on my face until the final note died. I didn't care about the fifty thousand other people in the stadium with me - that song was something completely liberating for me. I paid for my exuberance at the concert for over a week afterwards - and every stab of pain mattered not at all. 

The other two examples I will share are quotes from Steven Erikson's glorious Malazan Book of the Fallen. The characters are not talking about illness - they're talking about nothing of the sort as far as I recall. It doesn't matter - the words mean something to me and I often say them in my head to myself when I'm feeling particularly low with the pain. Since when did something have to be logical to serve a purpose? 

First in, last out. 

The motto of the Bridgeburners - the origin of my moniker. 

Ambition is not a dirty word. Piss on compromise, go for the throat. 

From Erikson himself, as I've just been informed. This makes some small amount of sense to me - my ambition of beating this condition isn't dirty at all, and there is no room for compromise.

There you go - a window into the way I think about these things. If you're not now terrified and utterly convinced of my impending insanity, keep an eye out for my next posts!