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

Love is for Suckers

(It’s a great song and I can’t take myself seriously writing something even slightly soppy unless I've taken the mickey just a bit.)

One of the things I read a lot about across the communities and pages I frequent is people who feel cut off from their partner by their illness, or who feel they’re not understood and supported for whatever reason. I’m drawn to genuinely offer support because reading such things makes me very sad indeed, because your partner is the one person you should be able to tackle a large hurdle like long term ill health with.

It also makes me powerfully aware of just how lucky I am.

Alex and I met in a field.

As much as I’m tempted to leave it there for entertainment value, I’ll clarify that this wasn’t just any old field and was in fact the Bloodstock Open Air festival which regular readers are probably a bit fed up of me mentioning by now. We’d talked a bit online before that having hit it off as friends over the festival’s forum, but that was the first time we met properly.

All he did was jump up and down like a child at Christmas and shout “Hannah, SAXON!” at me for about 30 seconds (Saxon had just finished playing; he’s not quite that much of a raving lunatic).

If anyone was looking for any tips on flirting, for whatever reason it would seem this approach works rather well!

We got together at the end of that year (2009) and started to live together in February this year. Somewhat surprising to him at least is the fact I haven’t murdered him yet (That’s a self-deprecating reference to some of his more annoying tendencies and not a hint that I’m a psychotic axe murderer, I promise.)

(An old one while I was still well. I'd say I was completely sober here, but it's a lie and you all know it.)

The biggest point I wanted to make here is that for well over eighteen months he had a perfectly healthy girlfriend.

I’m not for a moment suggesting that starting out with someone with long term health issues isn’t just as daunting, but I can’t imagine that suddenly being thrust into the new reality of me not being anywhere near as able was an easy thing to deal with, especially coming out of nowhere overnight the way it did. It can’t have been any easier to watch the situation deteriorate over the next twelve months either.

You really wouldn’t know though.

I’m not that easy to live with, particularly in the winter months when I’m at my worst. I’m awkward to plan around, can’t always pull my weight with jobs about the flat (and even when pulling my weight it’s still weighted somewhat against him) and particularly when pain levels are running high I’m cantankerous and extremely short of temper. If pain and allodynia or sensory overload combine then I’m impossible and should probably walk around with “Danger, do not engage” branded somewhere about my person.

I never feel like me apologising or any amount of understanding that things are difficult takes the sting out of me being a bit of a cow, but luckily for me Alex is very good about it all. It’s also a big lifter for me that even though he’s the first to admit he can’t really understand to a full extent what Petunia’s doing to me, he reads this blog and takes an interest even when I’m waffling on and musing aloud.

With the amount of musing aloud I do about anything and everything, you’ll just have to take my word for it that he has nigh-on the patience of a saint.

I’m a hugely sensitive soul, and the person I get most upset with most often it myself. I still get frustrated with things I can’t do, and particularly with the amount of times I get muddled up or forget things. As a highly intelligent person this gets to me more than anything else. Not only does he listen, but he tells me off when I need it too. So not only has he had my back in the couple of instances where someone else has had a go about my health, he even defends me against myself on occasion. That’s a skill.

The first thing he’ll do when he reads this of course is tell me I’m not that bad (I’ll come back and confirm, but I’d lay a substantial amount of money on that being the case).  

I often feel like the role of your significant other doesn’t get the attention it deserves in respect of chronic illness – they might not be suffering the plethora of symptoms, but in some ways they do suffer with you and it’s hardly an ideal situation for them either. Naturally all he wants to do if I’m upset and sore is give me a cuddle – if my allodynia is awake, he can’t so much as touch me let alone put arms round me. I also don’t like thinking what a psychologically horrible thing it is to have to help your girlfriend who was completely fine yesterday up off the floor where she’s gotten stuck today.

So, in summary Alex deserves a huge amount of credit, and we really have a lovely life in our little family (us and Madam Dovakhitty) despite everything.

If love is indeed for suckers, at least we’re suckers together.

(And now.)

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

Fate is Inexorable

So says Merlin in Bernard Cornwell's The Warlord Chronicles, which I'm currently re-reading. 

As such I've been thinking about it quite a lot recently.

A warning as we start - this post begins with a bit of a moan. Sometimes unpleasant things happen as a result of being ill and I don't see anything particularly beneficial in cushioning that fact by surrounding it with rainbows and pixies. Whilst this blog is a place of positivity, I'm firmly against the idea of it ever becoming unrealistic.

Part of my new job is scribing for meetings anywhere in the country and this week's particular meeting was about 100 miles away. My hometown of Sheffield sits bang smack in the middle of the route so I decided to break the first leg of the journey up and take the opportunity to spend an evening with my Dad. I thought this would be a sensible move and would make things easier for me.

This turned out to be a bad move. Unbeknownst to me there was a huge incident on the motorway and so a huge of delay of at least four hours right on top of my junction of choice. The tail back reached some three junctions back northward and I escaped at the first opportunity hoping to approach Sheffield the long "back way" round.

As a plan this had little wrong with it - except the fact that most of South Yorkshire had the same idea. A journey of usually just over an hour ended up taking nearly three. It was 28° in my car which doesn't have air conditioning and the crawling progression allowed virtually no breeze to be built up via movement. The main problem however was that my legs, used to a routine of stretching and exercise each evening, locked up. The muscles burned and my knees and ankles started to feel like someone had taken a sledge hammer to them.

(No, really? If you hadn't clarified that I certainly wouldn't have noticed the miles of stationary traffic. Image courtesy of petrolblog.com)

When I eventually arrived my Dad had to lift me out of the car and carry my inside. To put that in some perspective the last time he had to do that I was 12 and had acute appendicitis. Having it be necessary again at 23 made me feel less than spectacular, it must be said. Thankfully with rest and heat the problem subsided enough to be bearable for the rest of the night. 

The point of this anecdote? An illustration of the truth behind the old adage: the more you plan, the more room you have for things to go wrong. 

Understandably as a chronic pain and autoimmune patient I do a lot of planning before undertaking anything particularly momentous or complex, and in essence that is sensible. That way I have more time to think through potential problems, weigh up risks and make a mental list of things I might need to have with me. Despite said aforementioned adage I generally feel better having done all that. 

The spanner in the works is that Petunia is a spiteful hag, and can and will play up whenever she feels like it and care not a whit how much planning I may or may not have done. 

I'm sure other sufferers will recognise this concept - the cold hard truth of these illnesses is that not only are they invisible, they are capricious and unpredictable to a fault. No matter how careful you are, this truth will eventually prove your undoing at one point or another.

My question to readers therefore is this: do we allow our lives to be put on hold as a result? Do we sacrifice all the things we'd like to do against that intangible possibility?

My answer? 

Over my dead body. 

I've said this before in previous posts, but I'm a firm subscriber to the school of the thought that, illness or not, life is for living and not just existing. If you never did anything which carried an element of risk, then sad to say you would never do anything at all. Obviously everyone's capabilities will differ because their conditions are wholly individual, and despite what I've just said everyone will inevitably have things which are completely beyond their health's capabilities. 

Regular readers will know my next big step coming up is attending Bloodstock Open Air - I don't want to come across for even one moment as if I'm assuming that sort of thing should be a standard for other patients. 

Generally speaking though, each morning you wake up with chronic ill health you could possibly have a flare up that day. You could also be hit by a bus, or win the lottery. You will never know until you try. In my eyes it's better to meet the likelihood of a sudden flare up with equanimity - these things happen, as we know - and continue on with whatever you set out to do. 

There are no standards except the ones you set for yourself. In some ways what I say and what one hundred other patients say is all just so much expended oxygen. 

On a related note, a girl approached me recently to give me her opinions on the blog. I've always welcomed feedback both positive and negative, particularly the latter as it gives me scope to improve. The girl was a complete stranger and suffice to say that her opinions were poorly informed and her manner quite rude. Her main point however was that I make a terrible spokesperson because "You have to be a damned sight more attractive than you if you want people to pay attention to anything you have to say."

Now, if I let her words be the standard I could let the risk of her being correct stop me writing The Retired Bridgeburner. Taken a step further I'd end up never leaving the house for fear that whatever I set my hand to my efforts would be completely wasted because I don't look like a model. 

However, I won't do so.

Sorry my dear, but I have a festival to get to!

(Metalrecrusants.com)

Do you have any thoughts on how you approach the inevitable unpredictability of your condition? Feel free to open discussion with comments below. 

Wishing you all many spoons xx

30 Day Chronic Illness Challenge: Day 4

Day 4: How have your friends and family reacted to it?

Honestly? I've been extraordinarily blessed.

Yes, there have been negative experiences but this illustrates the mistake I made and I've seen many others make - anyone who would cast you aside over an unavoidable health problem is not a "friend", so let's stop dignifying them.

They have no place here.

My family shared all of my frustration - they worried with me about time off work, ranted with me when I'd yet again come up against an obstructive doctor, and held my hand when I just needed to cry. More importantly than that they reassured me that it was in fact perfectly acceptable to cry. It still makes me cringe thinking about how many days of work my self-employed Dad lost through that first year.


Dad was living with me so saw the best and worst of all of it, and I am very grateful for his patience and forbearance even when I was undoubtedly being a pain in the neck.

My Mum has been there in spirit all the time, although living in a different city caused its problems. She has an astounding ability to say the right thing at the right moment and puts up with all my ups and downs.

My partner is a hero. Because he sees it all - all the different facets and all the punishing trial and error, all the times I don't know where to go next or what to do - and never flinches. And I'll be the first to admit I am not the nicest of individuals when being in pain and lack of sleep combine. Hell hath no fury like a lady who's fed up.

(On a recent reconnaissance mission to scout the "outside" - posing as a wedding, naturally.) 

"Immeasurably blessed" was not an overstatement. My friends are incredible - whether it's talking about the problems, accepting I don't want to talk about them, asking the right questions and not asking the wrong ones or just purely being there if and when needed, they are a treasure utterly invaluable.

One of the huge positives of my situation - and I am aware that seems an odd thing to say - is the friends I've actually made as a direct result of being ill. Some I already knew as acquaintances and the friendship developed through the common ground of ill health. Fellow bloggers Jenny and Shane are two such examples - and I'd ask anyone who has taken the time to read this to have a look at their blogs too. There are more and I'm grateful for each and every one. Through writing this blog I am constantly coming into contact with new people and it's been a very uplifting and cathartic experience.

To finish - you'll no doubt have noticed the talk of Bloodstock Open Air in So Say We All? Well, one of said friends and I have a pact to fight (or maybe enlist help!) our way to the front on the Saturday evening for Avantasia's first UK appearance.

(Challenge accepted.

Image courtesy of powermetal.cl)

Because the best companions are the ones who join you in hair-brained schemes.