"Another mug of mead 'til you fall down!"

... I stopped drinking quite some time ago and yet that's a fairly good analogy for what I've been feeling like recently. 

As you can see it's a quote, and it comes from Miracle of Sound's Skyrim-inspired "Nord Mead", which is below if you want to watch it (the answer is yes, you do). 

(Not that I've ever needed alcohol to "drink and sing and shout".... Miracle of Sound on Youtube)

Why you ask? I've had a medication dosage change. 

Nothing major in itself I suppose, just reducing the daily amitriptyline from 25mg to 10mg and there are a list of fairly sensible reasons for doing so, which this doctor was good enough to actually let me discuss and debate with him. He couldn't have been more different from the previous incarnation who only just stopped short of blaming the outbreak of any future world wars on the very existence of said medication. 

Essentially, at 24 I can understand the GP not wanting me to stay on it forever if they can possibly help it. The downside of playing about with it even slightly is that it's altering the one thing that allowed me a full night's sleep after six months of such a luxury being non-existent. So, something of an impasse. 

What we eventually agreed was the small reduction, with the long term plan of getting me on to the 10mg dose every other night instead of every night. We did discuss the possibility of feeling a little rough for a week or so while my body adjusts. 

Well, thought I, "a little rough" can't be all that bad can it? 

Silly girl. Thinking that was rather like inviting a game of "Spot the Stiff" just with happily less finality for all involved.

(British comedians Punt and Dennis - the explanation of "Spot the Stiff" begins at 0:56.)

Fast forward my first 48 hours and "a little rough" transpires to be the sort of exhaustion that renders me little short of murderous. Having an old friend as a guest meant I swallowed the symptoms a bit and went out, only to be greeted with a baby on the next table (probably teething, the poor thing) screaming. Now, I'm a bit sound sensitive at the best of times anyway, and shrill, high pitched sounds are always the worst. That's the first bout of shaking I've ever had in response to a noise though.

However, I resigned to spend most of the rest of the day curled up under a blanket with Jack Vance's The Complete Lyonesse and alternating said very charming fantasy with cat-napping, resulting in the likelihood of me going out axe-murdering reducing dramatically. Sigh of relief all round!

An interesting discovery was the misunderstanding assumption (by both doctor and myself) that the amitriptyline was only solving the sleep issue and not really directly treating the Interstitial Cystitis root cause. 

Wrong. A general increase in otherwise inexplicable pelvic pain and frequency of dashing pell-mell to the bathroom would suggest otherwise. Had I the opportunity this would not be quite the way I would choose to find this out!

The blog is a year old today... and this lack of sleep has left me feeling much like I'm back at the start of my journey again. Hopefully it will be transient and over swiftly, and I'd very much like to be able to update you all in a couple of weeks time saying that the worst is over.

Until then, thank you very much to everyone who has stuck around to read it and for all your tremendous feedback, and I hope to be able to keep you entertained and maybe offer the odd bit of information too. If anyone said they read this blog for the informative content and not for all the silly geeky references then frankly I wouldn't believe them anyway. 

I've had a very warm welcome into the chronic illness world both through the blog and through Chronic Illness Cat, so thank you to all who have made this a happy twelve months. 

Wishing you all many spoons xxx

30 Day Chronic Illness Challenge: Day 5

Day 5: How does being chronically ill make you feel?

I'll share a secret - I've been positively dreading a question like this one.

Frustration is probably the word which best encapsulates the well of new emotion in the wake of becoming ill. No matter how much work you put into positive thinking and moving forwards I don't think you can (or should) avoid the occasional rant or cry. It's human and it's healthy.

It's also particularly reasonable. Who wouldn't be frustrated with new limitations, new boundaries and new impossibilities which they certainly did not ask for?

(Thanks, but I'm sure I'll find it.)

For my own sake I refuse to think in terms of "might have beens". My life reached a fork in the road and fate or an almighty power or whichever idea you subscribe to intervened and I've been on my new path ever since. Sure, I'd love to have stayed on the healthy one, but I'm one of those irritatingly zen people who tends towards thinking things happen for a reason. One door closes and another opens, or so I like to think.

I certainly have my low moments or days when I want to jump up and down and shout that it's not fair - I'm not a saint, I'm a flawed human being just like everyone else. Some days I really do feel like a wide open vista stretching from horizon to horizon has been irrevocably narrowed, but it's wisest I find to have the necessary vent and then to put it to bed.

Anger and upset are normal and indeed necessary, but when you have a chronic pain condition bound inextricably with your mood which responds somewhat violently to tension and upset, it's a good idea to learn to temper things a little. For myself I tend to turn anger into resolve and a "you won't beat me" attitude. I'm starting to be absurdly grateful to the friend who named my inner health demon "Petunia" - it's wonderful having a name to direct my righteous anger at. If nothing else I can at least regress to being ten and call her names, which is surprisingly satisfying.

I'm not a person who likes to cry for my own situation, but I found it was better for me to just accept when I need to (more often than before though it is) and to keep going forwards afterwards. I had to train myself to not think of each bout of upset as a failure, which I had a tendency to do before.

Don't ever let anyone tell you being a perfectionist is fun. It's not. It's demanding and wearisome at times.

One thing I came to realise recently was that I don't respond well to being told I'm "inspiring". It's a lovely thing to say to someone, but I think deep down I'd much rather be a "normal" healthy individual than an "inspiring" ill one. Inspiring feels like a mantle I have to live up to, even on bad days. I'm well aware that's probably a quirk of my personality though.

"Everything happens for a reason" - but I'd rather like to be on the board the next time a big decision is made.

That's a wish unlikely to be granted though, so I'll just go back to being the Dragonborn in Skyrim instead. A majority share in the entire universe, servant of multiple Daedric princes, Archmage of the College of Winterhold, Listener of the Dark Brotherhood and general all around pain in the backside.

(Skyrim - vicarious horse riding and ass kicking all in one Shadowmere sized package.
Image courtesy of comicbookresources.com)

Silliness of the Day

(Sahloknir - not a happy chap)

Otherwise known as "why Hannah shouldn't read medical articles first thing in the morning".

Having a quick skim read of this:

"A Workout Without Working (Much)"

I came across the word "sarcolemma" - the membrane around the muscle fibres.

My not-fully-awake-and-a-bit-foggy brain read this as "Sahloknir", which followers of Skyrim may recognise as the somewhat angry dragon you encounter just outside Kynesgrove in The Blade in the Dark quest.

So, quite by accident I may have solved the mystery of Fibromyalgia.

We're just full of angry dragons.