"Just One"

This year's Invisible Illness Awareness Week campaign was "Just One". We are all "just one", but as a chronic illness patient you are one of over one hundred million sick people the world over. You are someone, and you matter.

I missed the week this year with everything going on (as detailed in my last post), but although a little late (which is better than never) I wanted to show my support regardless as the campaign is a wonderful one and raises awareness and community spirit every single year. 

(http://invisibleillnessweek.com/)

I am Just One. There will only ever be one of me. There will only ever be one of Petunia.

My chronic illnesses are fibromyalgia (with associated infrequently active costochondritis) and interstitial cystitis. Together they make up Petunia, a joke run amock comparing them to a stroppy teenager living inside me who inevitably ended up with a name which stuck.

They present difficulties. There are activities I had to give up or restrict, there are plenty of things I have to turn down on the basis of being too tired and in to much pain. I don't drink, I have a restricted diet and many every day activities are far more difficult than they should be. Sometimes they are impossible. My sickness record will inevitably never be perfect. Sometimes I am entirely housebound.

So, in some ways I am "the one who's ill". I am the one who is tired a lot and leaves every event early. I am the one who is sometimes unreliable and doesn't show up at all. I am the one viewed as awkward when I raise concern about what seem to be normal, commonplace things. I am the one with the funny diet who doesn't drink. I'm the one who has far less energy than is normal for a mid-20 year old. I am the one who sometimes can't stand the most common place of noises, and yet other times is completely fine.

Sometimes I am the one for whom existence can be painful and exhausting to the point of tears.

However, that is far from all I am.  In being "just one" we can all be far more than our illness.

I am one of the ones who is an administrator for the Chronic Illness Cat community, where we are all far more than just one. We're a community and we endeavour to laugh and poke fun just as much as possible at the colourful array of difficulties life with chronic invisible illness presents.

I am the one who creates. I am currently doing some of the artwork for a frined's table-top RPG (I promise to stop blogging and get it finished soon!), I make things for those I care about and I most recently re-created the map of Middle Earth for our new house. No matter the energy this takes, I still continue to do it.

I am the one who strives against Petunia for the things I enjoy. I am a fan of music and theatre, and we are regularly at odds over whether attendance is worthwhile. I love animals and go out of my way to spend time around them in some way shape or form. I still firmly believe that some things are worth the price inevitably paid. I am the one who makes that decision time and time again to fight and to not give in or give up.

I am the one who feels things very deeply. Instead of being embarrassed by my emotional attachment to books, films and other media and listening to the cynicism which would present this as "wrong", I have embraced this as part of necessary and healthy catharsis in my life. I am the one who has shed tears over The Silmarillion with each new re-read, and who wept for the last thirty pages or so of Steven Erikson's The Crippled God (and not for the first time in that series). I am the one who will never be embarrassed by this again.

I am the one who conisders herself lucky enough to know some of the best people in the world. I am blessed with some truly wonderful friends who make everything more bearable, both near and far. I am fortunate enough to have an incredibly supportive family.

Lastly, I am the one who strives to make her small corner of the internet a helpful, informative and cheerful place for any of that one hundred million who want to drop by and read. I am the one who will continue to do so for just as long as I can, in the knowledge that if I can comfort even one person then all the spoons which go into the blog are worth it.

I am "just one" wishing you all many spoons xxx

Adventures in Adulthood

(Casually rejecting adulthood in all its forms)

There are some things in life you can never avoid. There are other things that are worth it in the end but come with a list of inevitable side effects and unpleasant aspects you wouldn't wish on anyone.

I found this to be one of the earliest lessons of life with a resident internal prankster. You rather quickly end up in an endless cycle of analysis and decision making about what is or isn't worth the predictable side effects and the necessary days of recovery.

Most things in life you can apply this to. Nobody likes to miss events like birthdays, weddings and family occasions, but sometimes such things are necessary. We all have different things for which we are most prepared to throw caution to the wind.

However, some life events answer to nobody's schedule, analysis or planning. This I have discovered in the process of buying our first house.

Firstly, we're about to exchange contracts so we're almost there. The conclusion cannot come swiftly enough for my liking, and despite having the chance to party I would hazard a guess that even Her Tempestuous Majesty wouldn't say no to a bit of a well-earned rest.

Secondly, the whole conveyancing process has revealed some control issues I've successfully kept hidden up to press. I do not do well when things which have a huge impact on me are completely outside of my influence.

What has become apparent is that we don't have the best legal representation in the world. I won't bore you all with the details but plenty of things have been less than confidence inspiring. It also transpires that no amount of coercing makes said legal representation better. We haven't hit threats of impending doom yet, but I'm not convinced even that would raise so much as an eyebrow.

That this situation is unpleasant and stressful is one of the only things Petunia and I are wholly united on. It's also firmly in the category of unavoidable - it will be finished when it is finished and not one moment sooner.

To give the short version, I've been in virtually a permanent flare up for the last month to six weeks. I've just about managed a routine of very early bed times which keeps me functioning enough to go to work, but little else.

Outside of general day to day, a recent wedding was from an illness perspective completely disastrous, but more positively I managed a small corset-laced excursion to an Edguy gig with friends. Tired or not, fun is a must for keeping the spirits up when larger matters are out of your hands. For me there is little in the world a good power metal gig cannot temporarily improve.

(Proof that both corset and outing happened, because at this rate I may dismiss this whole period as a bad dream...)

I've been off my food frequently, bursting into tears with little provocation and my sensory overload symptoms have been virtually unceasing. Every little innocuous noise at home has been almost panic-inducing and it feels like surviving mere existence is exhausting. I am so excited about moving to a tiny country village and wholly ready to embrace the comparative quiet.

The upshot of this is that the outcome will be so worth it. We're buying our first home together, a quirky little house in a beautiful village in the West Yorkshire countryside, and having been checking out the area I can only opine that Yorkshire isn't called God's own county for nothing.

What do you mean I'm biased because I'm from here?

Some things are inescapable, and it's all about how you meet the challenge they present. When nothing will make the stimulus change, it's best to be as positive and health-conscious as possible until it passes.

So, I'm resting a lot and trying to steal small pockets of time for myself with a book as often as possible. Much and more Tolkien has been devoured.

One of those things is gaming nostalgia a la the Forgotten Realms. Most recently it's been Icewind Dale 2, sequel to my favourite piece of nostalgia gaming on this good Prime Material Plane.

One thing though, IWD2?

"Rest until fully healed", you say?

Chance would be a fine thing. The first order of business for our gorgeous Upside Down house may be to make a solid attempt at such a thing.


What life events have inevitably affected your health? How did you cope with them?

Hefting my adventuring gear and wishing you all many spoons xxx

Don't be hasty

"It is a lovely language, but it takes a very long time to say anything in it, and we never say anything unless it is worth taking a long time to say, and to listen to."

Treebeard on "Old Entish" - The Two Towers, JRR Tolkien

That's the sentiment I'm musing on today - nothing worth having or doing is ever easy, they say. Whoever "they" are, their bedside manner needs a talking to. 

I (and other bloggers) often talk about the things you can inevitably no longer do when faced with long term ill health. We also turn this on its head and talk about the things that we *can* still do. However I don't think personally I've ever much talked about the middle ground - the things you can do but which take significantly longer to achieve. 

I think that's worth talking about. Understandable frustration aside, with things like that it's still perfectly possible to achieve your goal even if it takes two or three or twenty times as long as it may once have done. It's very easy to get caught up in the frustration of the process and lose focus on the identical end result. 

For me as a creative person, something I make which has taken a long time is just that little bit more special to me. The difficulty involved makes the achievement greater. 

This is highly relevant, because after many, many hours and much frustration indeed I finally finished my baby this evening: 

(Not going to lie, this was a little bit emotional.)

It's my gift to the other half and to our new house (which we will hopefully be in soon!) and it's the first time in a long time I've made something purely for me, or by extension us. I still have other things going on creatively speaking, but this was well and truly my baby because it was so personal and the source means so much to me. 

However, it wasn't without incredible frustration. I false-started three times with the initial pencil outline. My hands were stiff and particularly un-dexterous the first few times I sat down to begin, even with the aid of my heat therapy gloves. The third time I genuinely thought I'd never get started - I couldn't even draw the outline of the coast. 

Not to be deterred, eventually I managed to get started and in short stints the larger map took shape. The crowded spaces of Arnor and Eriador and then Gondor gave me endless trouble and many re-visits were needed. 

Interesting point: the map of Middle Earth doesn't scale into A sizes. At all. The observant among you will notice the bottom half of the map is actualy proportionately smaller than the top - but then I never claimed to be perfect and I don't create with the goal of perfection. Accuracy yes, but utter perfection is impossible and it wouldn't really feel like something I'd made if it was an exact replica of the source image. 

Some fifteen to twenty hours later, there you have it. The background is very pale because I love the pen colour and felt that it should be left to shine a bit. Mordor is shaded slightly darker and the opposite corner has a burnt umber overtone to it, just to give some depth and variance. I want it to look old after all. 

I will also point out this hurt my hands a lot throughout those hours. However, I accept when I start a project like this that this is inevitable. And yes, it would have taken me about a third of that time at one stage. 

Thing is though, the end result is still there. I still finished. and still created something I'm really proud of. I think given that it was worth the extra time and flaring up and tiredness.The frustration is a worthy price for the sense of achievement. 

Something that was worth doing in a set amount of time is still worth doing in double or triple that amount of time if you care about it enough. Petunia teaches me little that is useful, but patience isn't entirely without merit. 

So, don't be hasty. 

"Never is too long a word, even for me."

Treebeard - The Two Towers, JRR Tolkien

I promised a blog when the map was finished - now I'm going to go and sleep for about a week. Wake me when we can pick they keys up, would you?

Wishing you all many spoons xxx

Things I discovered this week: The Sequel

Consider this the second in the series of "The Retired Bridgeburner buys a house and gets thoroughly frustrated with everything to do with being a grown up and is now considering coming back as a cat."


1. Conveyancing solicitors are bad for your blood pressure, spoon levels and just about everything else. 

I will be brutally honest and say that I don't think there's a single more frustrating process on the planet than that of conveyancing. I say this knowing full well that as we're a sole purchase it could be a great deal worse were we selling or indeed doing both at once. I cannot adequately describe the sheer number of spoons I would expend dropping our conveyancer from a great height. Repeatedly. I'd make the scene from Sherlock look gentle. The rollercoaster of skidding from "What the hell are they even doing?" to "Everything is under control" roughly once a week is becoming both tiring and boring. Can I just have my house now please?

Mr solicitor, consider yourself weighed, measured and found wanting.

(So much. Image from wifflegiffle.com)

2. My brain does not do "shades".

Specifically shades of wood. My brain was crafted to do many things indeed, but accurately judging furniture in a shop against furniture I already own and have spent many years being in the vicinity thereof for matches of colour seems to have been missed of the list. When purchasing a wardrobe, I was convinced the bed I've slept in for the last eighteen months was *not* that shade (oak, apparently) at all, only to come home with the catalogue, hold the list of shades up to the bed and find that in fact it is that shade, has always been that shade and will likely remain so short of some sort of painting accident.

It would help tremendously if pine, beech, oak and the like meant the same thing across shops - whcih they resolutely do not. I mean honestly, how do people do this? Is this a gift from the magical land of Adult that hasn't arrived yet?

(It's totally this. Image found on Tumblr, original animation from Disney's Hunchback of Notre Dame)

3. My partner and I have absolutely no self-discipline to speak of. 

I have already stated on here before that we are getting a cat when we move. If we were reasonable adult beings with an ounce of discipline between us we would not be looking at rescue centre websites and waxing lyrical about how gorgeous one cat or another is, and Alex would not be planning an army of cats. Alas, we are not and therefore we keep sneaking a look and fervently hoping one cat after another is still about when we've moved in.

The upside of course is that I'm sure the cats who aren't will have gone to good homes, which is the thing that matters. Still, we're allowed to mourn all the wonderful Miniature Giant Space Cat pun opportunities a little grey cat called Boo would have allowed us.

(Fellow Baldur's Gate players, take a biscuit on the way out. Image from giantbomb.com)

4. Choosing a dining room set based on the fact the table extends because you're going to start playing Dungeons and Dragons is a perfectly legitimate reason. 

It's a nice table and chair set as well, but that was somewhat secondary to "Oh look, there's an extendable panel in the middle!" in the list of reactions.

Our starter pack for Fifth Edition arrived last week. We've never played it before, so to test it out I killed the same goblin at least three times, whilst he killed me at least six. I used a pre-made character sheet for a Lorekeeper of Oghma (adventuring librarian at your service!) which stated I was something of an insufferable know it all. This flimsy justification for arguing technicalities did not stop the trainee-DM (Alex) dropping three dragons on me when he got fed up of me explaining oxen wouldn't be scared of the sight of dead horses in the road, but they would certainly be scared of the smell of blood.

What? It's called roleplaying, children.

(So excited to get started! Image from greyhawkgrognard.blogspot.com)

5. I am apparently not allowed to sing the packing song from Disney's Sword in the Stone whilst packing. 

There has been an embargo placed on my "unique" taste in packing music. No Higitus Figitus for me.

I maintain however that "Books are always first you know..." is perfectly sound packing and unpacking advice.

Altogether now! "Hockety pockety wockety whack, odds and ends and bric a brac...."

(Merlin, a wizard who has his priorities straight. Image from cokieblume.wordpress.com)

Watch this space, as the next date will hopefully be when we've moved in to the Upside Down house! And yes, I'm going to sing the packing song anyway.

Wishing you all many spoons xxx

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