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

Icasaracht

“…To the frozen north these heroes would come, drawn into a twisted maze of shared destinies that would lead us all into the cold and terrible Heart of Winter.”

The Gloomfrost Seer – Icewind Dale: Heart of Winter

Now do come along, you can’t seriously be surprised at a D&D reference after all this time?

I’ll preface this with a bit of an odd statement: I love the idea of winter. For whatever reason I always have an attachment to books, films and games set in the stereotypical “frozen North”, there’s something about those settings is instantly captivating for me. This was a factor that led me to pick up Icewind Dale, my first Dungeons and Dragons game – and lo and behold I became the sort of person who can happily lose hours waving a big sword at a dragon until said beast is kind enough to fall over.

Maybe it was all those years of alpine skiing when I was younger. When Bilbo says in The Fellowship of the Ring “I want to see mountains again, mountains Gandalf!” I can empathise whole-heartedly. There’s still a pronounced tendency of mine to revert to being a giddy six year old when faced with snow, but then it’s quite a novelty to get a decent snowfall in the UK. The photo below was one I took about a mile from where I used to live in Sheffield during the last heavy snowfall.

(Taken back in my pre-Fibro days where I thought a four mile round walk in the snow for a cup of tea was a good idea.)

Since contracting Fibromyalgia my love for the reality doesn’t quite match that of the idea any more. The reality of winter in the UK is that it’s cold and wet, and wet is definitely the greater of those two evils for me. We had a long and relatively dry spring and summer last year and I think I may have gotten carried away with how much “better” I seemed to be throughout this pleasant weather. Autumn brought a return to the more severe aches and stiffness, and winter rolled in accompanied by soaring levels of fatigue. I could definitely be considered grumpy at this stage.

Winter also plays havoc with everything I would usually do to feel better, as it transpires. On days when I can work up the energy to attempt a dancing session, I’m finding I can’t do half as much as I’m usually able to. Irritatingly Petunia isn’t polite enough to inform me that exercising is a bad idea until it’s been firmly established for at least half an hour that I am indeed exercising – then she throws her toys out of the pram. This has led to a few less than pleasant evenings where I have got this wrong, but the reprieve it can offer on a good day is worth the risk. Also, I just feel better in and about myself when I can exercise.

I’ve been spending the last month or two perpetually unable to get warm whether at work or at home, despite multiple layers and in the case of work sitting virtually on top of a portable heater. If I had it any closer I would probably be set alight, but for all the difference I can feel it may as well not be there. This manifests into a reluctance to go out when I’m already cold inside, which in turn leads to the frustration of cabin fever which it never takes me very long to start feeling.

I very much look forward to it warming up. It would be nice not to walk from one end of the flat to the other and feel the need for a sit down, and to not feel faint after something as simple as peeling potatoes for dinner. I know it can’t be helped and I need to just accept that for this part of the year this is the way things will be, but I think having the reprieve through the summer and for there to be such a striking difference actually makes acceptance more difficult.

So, the title?

Well, here’s a spoiler warning. Hereon there will be spoilers of good, neutral and evil both of the lawful and chaotic variety. You’ve been warned.

(Icasaracht in-game not obliging to fall over. Image from forgottenrealms.wikia.com)

Icasaracht is the eponymous “Heart of Winter”. She’s the final boss of the expansion, and the reason for all the woe and horror brewing. Put simply she is a very bad tempered white dragon with mortality issues, and if you were paying attention in the original game you may also have twigged that she’s the dragon matriarch whose body lies on the bottom of Lac Dineshere near Easthaven. This is assuming you talked to Elisia the sea-elf – and you should.

So, as a representation of the “cold and terrible” winter, she works well as a somewhat whimsical metaphor for the object of my frustrations at the moment. That and when you finally meet her in-game she’s so irritating that you’re just itching to clonk her on the head with something heavy and be done with it.

Not that I’m one to hold a grudge, you understand…but I have another few months of inclement weather to make it through yet, and with my constant poor energy levels kicking Icasaracht up hill and down dale seems a rather fine way to pass the time.

To quote something a friend of mine often says….. If not back, avenge death.

Wondering how this mage malarkey works anyhow, and wishing you all many spoons xxx  

Screw your courage to the sticking-place

("Positively primeval." Image from fanpop.com)

An aside: the title is part of a speech from Lady Macbeth – it also turns up in Disney’s Beauty and the Beast in the song “Kill the Beast”. There you go, a completely irrelevant fact for you. You can't say I never tell you anything interesting (read "useless").

Courage and bravery are ideas I often see discussed and opined upon in the realm of chronic ill health. A few people have kindly told me they think the writing of this blog is brave, not only in openness about grim details on occasion but also in being willing to tackle difficult subjects, from time to time taking the road less traveled by in terms of approach to them.

It’s a concept I find horrendously awkward.

I don’t see myself as a particularly brave person by nature. I’m just a bit too quiet and mild-mannered for that, and for a practical example no matter what anyone tells me about “facing up to your fears” nothing under the sky would compel me to get close to large spiders. I’m not an unusual individual in character really and in writing this blog I’m not creating the textual equivalent of rolling high fortitude saves against life.   

In discussing this idea recently I countermanded it with the fact that I’m not always open about my health. There are plenty of occasions where I don’t talk about it when I perhaps should, times when I’ll smile and say everything’s fine when I actively want to scream, and rarer occasions where I’m faced with ignorance and I simply don’t have the energy to match it.

There’s problem number one – the idea that to be brave, you have to be the same all the time.

The second issue is the idea many are conditioned towards that bravery manifests in one set way. It’s bold and makes itself heard; it batters down any and all doors closed against the cause it champions. It never, ever pauses or falters.

In this guise therefore it is essentially a somewhat inhuman characteristic.

Within the sphere of chronic illness there are plenty of examples of different forms of bravery. It doesn’t have to be flashy or worthy of recognition and it could be entirely personal and appreciated by an audience of one.

Making it out of bed for the first time in a week after a flare up, facing numerous and sometimes fruitless hospital procedures, speaking about your health to someone new, agreeing to a trial a new medication – they’re all courageous acts in their own way. They might not gain the recognition they deserve for being so, but that makes it no less true.

(Poignant. Image from spirituallythinking.blogspot.com)

The one characteristic of mine that I would allow is possibly a brave one is that I've never very often been afflicted by the need to belong to a group, and so I've always had the ability to stand aside from behaviours or ideas I believe to be morally wrong despite of what anyone might think of me because of this failure to conform. This I think has manifested in a tendency for some posts on this blog to be a little apart from the norm of what a reader would maybe expect from a blog about illness. 

I’m not here to tar all healthy people with the brush of ignorance, and I’m not writing from the position of believing all sufferers of chronic ill health behave impeccably and are always right in what they do and say. That would be an easy enough path to travel down, but it’s not the one for me.

I didn't start the blog because I thought it would be a brave thing to do – I started it because I thought I could help. I wanted to show the reality behind all the romanticised or conversely demonised notions about chronic illness and those who suffer with it. I hoped to show that it was normal to struggle and to have bad days, just as it was normal to have better ones.

In summary then I’m going to offer an unpopular idea about the concept of bravery within the realm of illness, because I don’t believe that the loud and brash archetype of courage is the correct yardstick to apply.

Perhaps courage lies in making peace with the situation; accepting that good days, bad days and everything in between are a part of being human.

Maybe the greatest bravery of all is in accepting that you can’t always win, and that in not winning it’s fine to pull off the Boots of Anti-Ignorance (+5 these days, because +3 wasn't quite enough!), hang up the Helm of Brave Face* and live to fight another day.

*In case you wondered, no, it’s unlikely I’ll run out of Dungeons and Dragons references any time soon. 

Whilst I’m talking about recognition, I’m incredibly honoured to say that The Retired Bridgeburner has been nominated in the WEGO Health Acitivist Awards! Nomination are to my knowledge still open and you can find out about the categories and when voting will begin on the link  here.

Wishing you all many spoons xxx

30 Day Chronic Illness Challenge Day 3

Day 3: How did you get a diagnosis?

Apologies for a late addition today! I have in fitting fashion been, as a friend of mine rather aptly terms it, "flaring all over the show".

(Diagnoses are a little like dragons to me - elusive, a little mythical but probably hiding somewhere. You're judging me, I can tell. Stop it.
My favourite of the D&D dragons, the Lawful Good Silver. Courtesy of draconika.com)

In my case as previous readers are aware this is in fact "diagnoses". They happened quite separately and in entirely different circumstances. I'll start with the Interstitial Cystitis as it is by far the simpler of the two.

I mentioned in a previous post my time spent under Gastroenterology, and during this time I had a fair few visits to hospital and in routine tests I kept showing up with an apparent water infection. Having had a run of actual ones in the previous couple of years I was a little skeptical - I'd describe the symptoms as similar but with enough difference that the sweeping ten second diagnoses were starting to pray on my mind. It took five courses of antibiotics doing not a damn thing for a previously unseen doctor at my hospital's GUM clinic (I'd long since given up hope with my GP of the time) to raise an eyebrow and write me a referral to Urology.

Which my then GP surgery promptly lost. Now I don't swear habitually, but I think I probably swore more in that moment than I had for the rest of the year up to that point put together. I was not a happy lady.

This prompted a very successful change of doctors surgery to a newer once which opened locally. I find it somewhat amusing looking back at how I approached my first appointment. I probably resembled a tightly coiled spring and was ready to bite at the slightest provocation.

My new GP gave me absolutely no provocation whatsoever. He listened to me recount the symptoms and talk about the lost referral, drew up a new referral request on the spot accompanied by words to the effect of "this nonsense has gone on long enough" and as I left feeling a little foolish he said something so utterly out of character from my experience with doctors thus far that it virtually floored me:

"Don't worry, we'll find out what's wrong with you. You're not going mad. Keep your chin up."

Two months later I went for an initial appointment with Urology, who diagnosed me with Interstitial Cystitis based on symptoms alone in under five minutes. A cystoscopy was considered for absolute confirmation but as I'd just recovered from a run of three internal cameras (all of which had caused problems in the aftermath) it was decided to my lasting gratitude that I didn't need anything else put in places it probably shouldn't go. Also, the rather frank and earthy description given of the aftermath of a cystoscopy rings with me to this day:

"Fair warning, it's like pissing glass for a week."

Remembering that discretion is the better part of valour I beat a hasty retreat.

(Baldur's Gate's Minsc on retreat - "There is no shame in returning another day with bigger swords!" - a nugget of rare wisdom found in the midst of screaming "Go for the eyes Boo!" at every opportunity.

Image courtesy of mmo-champion.com)

Diagnosing the Fibromyalgia which is by far the greater of the two in terms of effect was somewhat more long winded. I don't think this was anyone's fault really as it took a long time for the muscle and joint problems to be looked at in a separate light to the bowel issues. Once that decision was made (again under the new doctors surgery) then a long haul of tests began.

As my Dad has Rheumatoid Arthritis this was first on the list to be checked for. No inflammation markers at all, so onward!

Lupus? Really? But that's a joke on Hou- apologies doc, I'm sure you've heard this one already.

After the round of Lupus antibody tests came back clear along with several others (having five vials of blood taken made me seriously wonder if they were secretly farming it...) my GP seemed a little lost on returning for my next visit. In doing a general search for information on chronic pain she stumbled upon the tender point test which I'm sure fellow Fibromyalgia patients are probably familiar with. My understanding is that a definitive diagnosis is reached if a patient reacts to pain in at least 11 of the 19.

I forget how many the GP had tried when she had to pick me back up having fallen over and curled up in a ball until the pain subsided. She put a negligible amount of pressure on each point with two fingers, and the only description which comes close is like having white-hot fire pushed through the skin and into the muscles and tissue underneath.

Let's just say I never want to repeat the process. However I'm hugely grateful to that second surgery, as I firmly believe I'd be lost in the diagnosis loop to this day if they hadn't stepped forward and been prepared to think outside the box.

Sometimes a fresh pair of eyes and innovative thinking can be beneficial beyond words.