The Things We Believe In

Shine a light 'til the dark sky is burning

Wolves are howling, fortune is turning

Orden Ogan - The Things We Believe In

I return from further intrepid adventure!

I wrote around this time last year about my experiences at Bloodstock Open Air 2013 and mentioned I would be heading there again due to the booking of Emperor. Well, just less than a month ago I made the trip again, although this time only for a day. It doesn't feel like a full year has passed.

Now, before anyone decides to try and be clever, I am well aware an outdoor music festival is not the most sensible of environments when you are perpetually unwell and I do take sensible precautions. I don't camp any more - I stay in a hotel nearby and as I drive anyway it's only a short hop there and back. I am usually to be seen with a backpack the size of a bungalow containing clothing for every eventuality (I'm British - we're good at changeable weather!), painkillers and all sorts.

Even with all of that I'm aware it's still a bit silly. The fact is music isn't about being sensible - passion for anything is never sensible, or it wouldn't be passionate.

There is something about the atmosphere of a festival that is incredibly difficult to explain to anyone who has never experienced it. Bloodstock Open Air is small enough to still feel very much like a friendly community affair, and that's a large part of its appeal for me. I've little interest in attending festivals much larger.

I believe I've spoken on here before about the need to do the things you love in spite of your illness where possible and my belief that this is a key part of mental well being in the fact of chronic illness. It doesn't have to be anything big, and it doesn't have to happen often. Once is better than nothing at all - but every little helps. Every little piece of rebellion is a poke in the eye to your condition, and I say more power to you.

I love Bloodstock. There have been times when I've wondered about whether to continue going, but upon attendance at each year's event I instantly remember all the reasons I go. I'm fortunate to have a lot of friends who attend each year so it becomes in large part a chance to see them all as well as a live music experience. The festival is something I believe in, and I believe in the sense of community I described.

(Seeing this in its entirety is something I won't forget in a hurry. Image from metal-archives.com)

This year I was lucky enough to see Emperor - a band I'd always assumed I'd missed my last opportunity to see with their 2006 London show. I could spend a whole post talking about how incredible I thought they were, but saying that they were well worth a long wait for will suffice for now. My very talented friend from Blazing Scarlet Cosplay made me an incredible cloak with the Emperor shield and lyrics from With Strength I Burn painted onto it which I think I might have threatened to sleep in had it not being for the pesistent rain during the set. Next time eh?

Compared with last year, the single day took a lot out of me. I'm not sure why this was so compared with the more successful full three days last year. I spent a lot of time sitting down - there are great grandparents who are regularly more sprightly than I was all day. However, given my feelings about seeing Emperor it was really a case of saving my spoons for their headlining set to close the day. Nods must go to Orphaned Land, Old Corpse Road, Conquest of Steel and Carcass for being entertaining in the mean time.

This is where sensible kicks back in. Each small bit of rebellion against the ever-present illness comes at a cost. For the moment, I think my attendance at Bloodstock is worth that price and more. I ensure to book time off work around it to help, but I am also aware that one day the price might be too high. For the moment I intend to enjoy it each and every time I am able to do so.

I have limits though. Next year's Wacken festival in Germany features Savatage and TSO - a combination I would give limbs and vital organs to be able to see. However, despite that hyperbole I won't give my overall health and that is the reality of a long festival and lengthy travel either side in another country for me. The price is just too high.

I'm devastated, particularly because I know so many people who managed to get tickets. You begin to understand however when living with an incurable illness that however large the benefit to mental well being, you must always balance pushing too far and too hard. As much as I joke, sensible is necessary. It's the thin line between coping and not and it's there to be ultimately respected.

In short, we all have limits. Chronic illness just means different ones to usual sometimes, and sometimes it means missing out on the things you love.

So, come next August I will sit at home with Wacken's livestream, a mug of tea and our future cat (who will be ruling the roost by then) and settle for being there in spirit. It's not the same, but it will do.

No matter the things we believe in most powerfully, until someone invents a means by which to obtain infinite spoons (hurry up, would you?) then this is the reality for the chronically ill. I don't point this out to garner sympathy - I've just spent most of this post talking about something I love which I'm lucky enough to still be able to do after all - but merely to illustrate.

No matter how positive an outlook, our limits are very very real.


Does anybody else have events/activities that they are willing to pay a price in health for? What are yours? 

Wishing you all many spoons xxx

The Ancient and Most Noble Art of Spoon Counting

An art which has been proving since time immemorial that no matter how well figured out you think you have your personal demon of choice’s energy limits, it will wake up one day and kick you for such bare-faced temerity.

It’s warming up as we head into summer here in the UK so this is my best time of year symptom wise. I’m never symptom free but I’m as close as I will ever get during the warmer months. As such I push the boundaries just a little further and for the most part tend to get away with it relatively well.

I think we can safely say that Petunia heard me thinking about this and was not amused. As we know she disapproves of most things which fall under the category “fun” and would much rather I didn’t try and participate in any of it. However, she seems to particularly dislike nights out of the rock music persuasion. She clearly has no taste.

Even if I don’t make general nights out I always like to at least show my face for a bit at birthdays and I’d been looking forward to this one for a while as a chance to see friends from Sheffield for the first in a few months. So, we gave battle with the M1 on Friday evening and braved the wilds of South Yorkshire.

 

(Note: I was born there so I’m allowed to mock it. Others however are not.)

 The weather stayed relatively warm (if wet) and I purposely didn’t do a great deal during the day on Saturday so as to conserve spoons. The night itself was a great deal of fun and I think we headed home at about half past 1, which is not bad going for me at all.

Sunday passed mostly uneventfully aside from general tiredness. Monday morning however was something else entirely.

It was definitely one of those “kick me” days. I was the sort of tired I would expect to correlate with running a marathon. Three times. In lead boots and carrying sand bags. I ached in places I’m fairly sure it’s been scientifically proven do not exist.    

All that because you don’t like Iron Maiden, Petunia? Really?

I have no idea what the difference was. Possibly the new high heels didn’t help matters as until I’ve had a pair of heels for at least three years I do a remarkable impression of Bambi in the ice-skating scene. “Kinda wobbly, aren’t ya?” would be something of an understatement. Wobbling is a surprisingly spoon-heavy enterprise.

Maybe maxing out your nerd credentials results in a detriment of spoons? Perhaps Petunia just can’t handle the kind of awesome only a Marauder’s Map dress can bring?

(If you were wondering – yes, the dress is exactly what it sounds like.)

I suspect however that the heart of the matter is that it’s just one of those things. We can plan for every eventuality and hoard spoons with military precision but sadly chronic illness is not so exact a science. The same event or occasion can be fine one week and a disaster the following one. A particular activity can be problem free for months on end only to revert to type out of the blue and become troublesome.

Speaking personally this still leads me to decline some things because I can foresee my commitment being an issue further down the line. Despite the circumstances we live in most of us don’t actually enjoy being unreliable, and for me at least sometimes preventing reliability from becoming an issue is better than trying to run with it and getting myself into a bind with “not letting people down” at the expense of my health.

Of course this means you miss out on things, and nobody said that was ever going to be easy. However were you completely healthy you would still miss out on potential experiences. Pre-existing commitments could make you too busy, not everything is financially viable and we all have accidentally double-booked ourselves and no doubt will again. So whilst it’s a negative it isn’t one that’s solely to be laid at the feet of chronic illness and nowhere else.

Sometimes, life is just like that.

Other times, you just need to kick your illness in the face for *its* temerity and enjoy a good night out regardless of the consequences. This weekend was one of those times.

After all, Petunia’s seeming hatred of my music taste needs correcting just as soon as possible. Maximum exposure must therefore be the way forward.

 

Listening to all the Iron Maiden, and wishing you all many spoons xxx  

With Strength I Burn

I return from intrepid adventure!

For some five years almost without exception I've made my way to Catton Hall on the second weekend of August for the Bloodstock Open Air heavy metal festival. I went along last year still undiagnosed and for the purposes of brevity let's just say it was an unmitigated disaster as far as health goes. Armed with lessons learned, a diagnosis and a new approach I've been waiting for this year's festival seemingly all year for a chance to unwind and spend time with friends I only usually have that once-a-year chance to see.

So, what were my precautions?

To start I don't think I've ever packed so many clothes for one weekend in my life, and as a typically low maintenance sort of person this did leave me somewhat boggled. However the key for me is to never allow myself to get cold, so layers and many of them are the order of the day. I'd also packed for every extreme of our wonderful British weather - sun scream, after sun and sunglasses wrapped up in a waterproof certainly seemed typically British enough to raise something of a chuckle from me. I packed the heat gloves, painkillers, a heat pain relief gel and a few other things in an attempt to cover all my bases.

The strange thing was I never needed them.

(The aviator twins.)

Now I don't want to give the impression that I spent three days bouncing about like the Duracell bunny and somehow came away unscathed. I was in fact exceptionally well behaved and spent a good deal of time sitting down relaxing and taking things at a very leisurely pace. I also cannot express the kind of difference being in a hotel makes. A hot bath and a comfy bed really did solve most of the problems of the previous year, and there's nothing like sitting up until 2am with tea, biscuits and girly chatter to put you in a very relaxed and glowing sort of mood for the next day's festivities.

I have to stress another large bonus was knowledge of a brilliant food stall to go and eat at, thereby avoiding stereotypically questionable festival food. Given how funny my insides can be on a day to day basis, the existence of the Deli Kate stand is and has always been nothing short of a god-send.

More than anything though, I was conserving my energy for the next to last set on the Saturday - the one and only Avantasia. I confess I became very silly indeed for that hour and a half and I'm definitely starting to feel the aches and twinges which precede a flare up as I write. I've said before some things are always going to be important enough to be worth it, and their first UK appearance certainly counted amongst those rare occasions. Their set was only topped later in the night by the announcement of Emperor for next year - yet another band I was convinced I would never be able to see. 

I make quite a big thing on this blog of psychological welfare and the crucial role it plays in the battle with long term ill health. Nothing could have proved this to be true more than my festival experience this past weekend. Not only did it mean spending time with a very close friend I don't see as often as I'd like since moving, but more important still it meant reuniting with what I've increasingly begun to see as my second family. I'm fortunate in that I know a lot of truly lovely people who attend the festival and wiling away hours on talk, laughter and general shenanigans is an incredibly large part of the whole experience for me.

There's no getting away from it, I'll have a flare later this week which will probably be quite a spectacular one, but the fact Petunia held off the spite for three days so I could enjoy myself means it will all be completely worth it. I don't think I've ever been grateful to her before, but there's a first time for everything. Common sense dictates attendance is a silly idea, but I was pleasantly surprised at how relatively healthy I remained throughout the weekend. Even had that not been the case, I adore this festival and it's something I am just not prepared to give up unless it becomes absolutely impossible. As regular readers will no doubt have realised, I am not one to quietly admit defeat, and whether it be fluke, happy accident or in fact a result of all the changes and planning I think I've been proved somewhat right on this occasion.

In conclusion I can say only that planning, caution and common sense will get you so far, but friendship and doing the things you love (and hang the consequences!) can sometimes take you even further.

(Roll on Bloodstock 2014...)

Wishing you all many spoons xxx