The Final Frontier

"Space: the final frontier. 

These are the voyages of the starship Enterprise. 

Its five-year mission: to explore strange new worlds, to seek out new life and new civilizations, to boldly go where no man has gone before."

Today I'm writing from a somewhat odd place.

I had a very uncustomary breakdown about a week or so ago. Without getting too in-depth I was overtired, over-stressed and generally in a pretty miserable frame of mind. It became one of the still very few times I allowed myself to admit (and have a good old cry about) the fact that being ill all the time isn't a great deal of fun.

It's very seldom that I actually allow myself to so much as think that, let alone come out and say it. I've always strived for positivity and a good mental attitude all the time. It took being sat down and given a bit of a telling off for me to wrestle with the cold hard truth that my goal was not only foolish but impossible. I'm always going to have bad days, times when I want nothing more than to throw the toys out of the proverbial pram and kick and scream until my situation stops being "unfair".

Sounds like a whine as soon as I add unfair, doesn't it?

(Here, now it's less of a whine!)

Well tough. Chronic illness isn't fair, but there's a healthy amount of difference between admitting that's the case and turning that simple truth into a reason for a bitter and hard-done-to attitude against life itself. So, in short, it's OK for me to admit that my situation is neither fair, reasonable or enjoyable.

What I then did was posted a very out-of-character vengeful and pretty vulgar rant about being ill over on my Tumblr page. It's something I have never once allowed myself to do - I've half-written it occasionally, but never posted it. I probably won't feel the need to do so again as it's not the sort of thing I do, but it felt good to allow myself to, giving myself permission as if I was giving myself a gift.

Why do I have so much trouble with the simple act of letting myself admit these things? Partially I'm still quite afraid of the way it can be perceived by others. I'm not by nature an attention seeker and I don't have time for "woe is me", I've better things to do. However I've never assumed those facts won't stop people from reading exactly what they want into what I write anywhere. Without consciously realising it I was censoring the things I committed to webpage, and in doing so I was starting to subconsciously censor what I was allowed to think and feel about my own health.

I'm a very sensible and practical person, but sometimes I need a telling off and a kick up the backside before I let myself slide too far into wild misery. It was good to be reminded that at the end of the day I can't control what anyone thinks of what I write, and that I should be writing for me and/or the intended audience, not with the thought in mind of what any unintended reader might think. I'm well aware TRB has such an unintended audience but as I'm managing just fine committing my thoughts to page here without worry, I should extend that same privilege to the things I write which are more personal elsewhere too.

Something else I decided as a result of this was to spend a good deal less time on other people and a little more on me. I became suddenly very aware of just how much time I was spending on Facebook and the like every day caring about everyone else and not looking after myself. So, aside from my admin duties over at Chronic Illness Cat I've really toned down the usage and have chat permanently switched off - this way I can just message the people I want to and not end up embroiled in conversations because I'm just too damned polite to tell people I don't really want to talk.

My own neglecting of looking after myself was indeed causing most of the problem. I've been on a temporary assignment this last week or so which means I have been unusually tired, but in the evenings this has meant I've curled up with a book, vegged in front of the TV or played Guild Wars 2, my new love. The ironing has gone unironed, and the socialising has been turned onto slow cook. It hasn't helped the tiredness at all (that is what it is, sadly) and due to being overtired I've still had odd episodes of sudden low mood, but I've felt generally a lot more relaxed in the evenings.

(The Refectory, Fountains Abbey)

For me there really is nothing like curling up in a hot bath with a good book to engender a feeling of rightness in the world (although as an aside the current book, Hilary Mantell's "Wolf Hall", hasn't quite earned "good" status yet. I shall give it time.)

Keeping on course of looking after myself, despite said tiredness the partner in crime and myself headed over to Fountains Abbey, one of the largest and most well-preserved Cistercian monastery ruins in the UK and (happily!) only an hour away. Whilst I realise as little as three years ago I could easily have walked around the whole site in a day, it was still nice to see the ruin (I am almost literally anyone's for old things which have fallen over) and to get a couple of hours walking in the fresh air.

Am I aching now? Yes. My ankles feel swollen even though they aren't because the joints are sore, and generally everything from the hips downwards aches. Was it worth it? Wholly and utterly.

So what have I learnt? That I need to allow myself a bit more freedom to be human and have low moods and bad days, and even days when I just want to behave like a complete brat (only occasionally for the latter), and I need to be a little more insistent in taking more "me" time on the whole as it really does make the world of difference.

All that was summed up rather succinctly the other day by a good friend: you're too nice for your own good.

Whilst it's true in how I behave for me and needs to alter in that sense, I still think there are far worse things I could be.

(It's my archway, you can't have it. Mine, I tell you!
Taken today at Fountains Abbey.)

Armed with the aftermath of said breakdown and the very helpful words of some of the lovely people around me, I'm going off very slowly exploring strange new worlds and intend to boldly go where no spoony has gone before. Going forward it's going to be a little more about me for a while, and a little less about anything else. As a very unselfish person that feels like an incredibly odd thing to write and accept, but sometimes it needs to happen and is a healthy thing, and as we know anything healthy has to be given a chance to shine.

What's with all the Star Trek, you ask? My copy of Into Darkness should arrive on Monday, and a good couple of hours of "me" time has being booked accordingly! Joking aside I do feel like I've taken a big leap this week in breaking down a few self-imposed barriers, and the change is all for the good. Long may it continue!


Does anyone else struggle to let themselves admit they're not very happy with their situation, or worry what others think? How do you overcome that?

Wishing you all many spoons xxx

A Spoonful of Sugar

I wrote a post titled Hanlon's Razor some time back about the danger of miscommunication between those with chronic illnesses and the healthy people around them. I find myself in my usual browsing still coming up against a lot of the same troublesome attitudes (on both sides) which perpetuate the problem and so started to wonder why this was so.

At a glance it seems the most frustrating scenario (and therefore the one most often complained about) is dealing with people who say "My friend did x, and they got better!" or "Have you tried y, I'm sure if you did that you'd be fine!"

(Often tempting, rarely constructive.)

Now, having been diagnosed for coming up a year and ill for over two I am completely aware of why advice you did not request can be immensely irritating. I also understand why constantly replying "I've tried that - it didn't work for me" only to be argued with makes the blood boil after a while. I don't want to sound like I'm coming from a place where I think everyone's too sensitive and that there's no real problem.

I honestly think the issue is in how the advice is given. On the face of things there's nothing wrong with someone hearing about something or seeing something on the internet, thinking of you and making a mental note to pass it on in case it is useful. I actually think that's a positive thing and it's nice to be thought of. The suggestion may not be of any advantage but it's the thought that counts.

Something I've been guilty of saying in the past (with no small amount of exasperation!) is "Don't they think I won't have tried it already?". Over time though it's occurred to me that it's an illogical assumption built upon the very shaky foundation of my patience wearing thin and nothing more sturdy.

Unless you are both omniscient and omnipresent then it is simply impossible for you to have either had sight of all the information housed at the myriad of sources available to us, or to have tried absolutely everything there is to try. If you somehow have managed that then it suggests to me you're probably some sort of god, in which case may I please respectfully request you stop slacking and get back to work on a cure?

At the heart of this problem I believe is the way in which the information is imparted - not what you say, but how.

To give this a more general context, one of my pet hates in life is people who are know-it-alls. The problem isn't that they are knowledgeable people, I like intelligent company and thoroughly enjoy learning about topics which are new to me from such individuals, but it's the attitude that goes with it. You can be knowledgeable without being clever at anyone else's expense, and you can offer the knowledge when approached for it, instead of being the sort of contemptible fool one can find riveted to a Google search so that they can be the first to come up with a word-for-word copied answer and "look clever".

I see this in much the same way - you can offer these pieces of information you've discovered in a sensitive and constructive fashion, and not by demanding the person on the receiving end accepts your miracle cure from the off. For example, when the research I made mention of in Elementary, my dear Watson was first widely released, I think six different people sent it on to me. The fact I'd already seen it the latter five times really didn't matter, I was just grateful for the thought. Nobody said "See, there's an answer so you won't be ill anymore!" or anything equally ridiculous.

The two seemingly unrelated scenarios share a common undoing - know-it-alls and those pedalling their unasked for "Just do this and you'll be fine!" cures don't impress anyone with half a brain.

It did occur to me my take on this is probably coloured by my relative lack of negative experiences in this regard. Few people have ever been rude to me in making suggestions, and I feel it's better to encourage people to do so than to seek to put them off because you've "already tried that" and so push them away and discourage them from trying again. You never know what they may find which you could overlook.

In closing if you do ever want to suggest something to me, speaking personally I'll always welcome it - I'm pretty up to speed but nobody's perfect, and there are plenty of old wives remedies and odd new-fangled options which aren't so widely recognised. More widely speaking it is probably wise to bear in mind the likelihood the ill person has heard it before or tried it, and try to avoid presenting anything as if it's a miracle cure. That is downright irritating I'm afraid. As with all other things in life, manners and attitude count for quite a bit indeed.

(Flavour-changing medicine. If I had that, I honestly wouldn't give a damn if it worked!

Image courtesy of cosmicplay.net)

Think about that, and the medicine may well go down in a most delightful way.


In case you don't know about the blog's Facebook page (here), then you may not have seen my news! I'm one of the group of new admins for the Chronic Illness Cat Facebook page. It's been in The Warrens tab for quite some time now and I'm delighted to be involved more closely with such a great community page. I strongly recommend it both for discussion and a healthy dose of dry humour. 

Come and join the sick kitties laughing!

Wishing you all many spoons xxx

The highway's jammed with broken heroes....

Excuse me while I casually hum the rest of Born to Run before I think about completing this post.

If you hadn't figured out I'm a huge Springsteen fan yet, then you either haven't been reading enough of the blog (disgraceful) or haven't been paying attention (only marginally better).

I've been thinking about the practicalities of driving and the need for a car in terms of a post for The Retired Bridgeburner after discussing the topic last weekend. My original plan on moving to York was to let the car go - I thought I could get along well enough without it and it would be saving plenty of money on insurance, tax, petrol and unsightly repair bills. The lack of those unsightly repair costs alone would probably also have done wonders for my nerves.

Yup, KvltKa is nearing the end of her road life. Fairly obviously she's a Ford Ka, and she manages to be a particularly fine example of all the things wrong with the model. Being the bottom of the hierarchy the parts are comparatively cheap but don't last, and at ten years old she's very definitely succumbing to the model's infamous issues with rust. However, I grumble affectionately. I really do love that car.

(KvltKa: raised by wolves in deepest darkest Norway, master of all things ice and snow.)

Upon moving to York in the middle of what proved a long winter by British standards I soon found that the car was a necessary evil. Whilst I do relatively well throughout the months when it's warmer, the Fibromyalgia does not enjoy the cold. Even a fifteen minute walk to the shops for supplies was beyond me on far more days than I'd like to admit to. I forced myself outside as much as I could (stubborn Northerner that I am) but I was painfully aware that certain necessities would have been impossible had I not kept hold of KvltKa.

As I'm sure many readers will be aware, the act of driving itself can be fraught with issues. If I'm completely honest I have the potential to be a proper petrolhead - I love driving. That is, I love driving when I can drive properly. I crave nothing more in the world than a great big windy 60 road with nobody else on it. As many of us have complained and will do so again: other drivers tend to take the fun out of driving.

However, I'm now far more reluctant to drive alone than I ever was before. I've had a couple of very painful episodes whilst driving - mostly due to being stuck in traffic and unable to stretch already overworked muscles, but it makes me tend towards having a passenger where possible. I'll drive familiar routes alone - between here and both parents' houses, for example, because I have all the places I can pull over and stop if necessary memorised. The necessity of travelling on new routes tends to find me sitting around doing much Googling and much reading of the Ordnance Survey to try and alleviate the necessity for panicked searches for stopping points.

Sudden movements by other cars can set the edges of my sensory overload off - I err on the side of caution and I'd rather cover my back in case the idiot *is* going to pull out without looking than choose to not react and suffer the consequences. However, whereas this is all normally a part of hazard perception and nothing to get excited about, these things can now make me jump and I remain jumpy and on sensory-overloaded edge for the remainder of the trip. I've never been a perfectly even-tempered driver, but this sort of thing certainly tends to make me more irritable.

I have been known to utter a few of the sort of "GET OFF MY ROAD!" curses which would make Jeremy Clarkson proud.

I try to combat this by leaving sufficient "non-driving" days in between necessary longer trips. Generally the worst of the overload comes at the end of long journey when I'm starting to get fed up and a little tired. I know my own energy levels well enough to know the difference between this sort of tired and the tired which requires me to pull over, but the former does tend to be the forerunner of jumpiness and a feeling that the cars moving around me are coming too close too fast.

I'm learning to recognise this and  combat it slowly. I'm quite proud of my driving and it's something I like to feel I do well, so I treat this as a new obstacle to learn my way around effectively - it keeps me on an even keel with it rather than becoming upset at the problem.

(Current favourite driving music... and the windows mean that nobody knows how ineffective my singing along is.)

I try and remember to always have something to drink in the car (lesson learnt from my disastrous trip mentioned in Fate is Inexorable) and I'm fond of driving with music on. Whilst it doesn't distract me from driving (I rarely change CDs whilst driving, that's what passengers are for) it can distract the sensory build up a little bit. It's not for everyone, but I've found singing along to something (thank heaven nobody but me has to listen!) can not only interfere with the build up of overloaded senses, but can also prevent you from getting too worked up too.

However, following a particularly sluggish trip back down the A64 this morning due to traffic, the next dozy fool who doesn't pay attention to what's happening in front is in danger of receiving the sort of language my parents (and many friends) don't think me capable of.

There's also the fact that lots of driving leads to lots of arm and leg ache. It's a sad inevitability (and believe me, my car steers very lightly indeed) but it's very much the lesser of two evils on a day when walking would prove just as problematic if not more. In my own experience I've never had the episodes of disorientation while driving that I know others have experienced, but if they ever do start to happen then it's going to require a lot of thought as to where we go in the future on the subject. Long may the lack of such continue.

I might not be over fond of the need itself, and it causes problems of its own also, but I found personally that a car was an invaluable ally in my independence and being able to still do as much as possible. Even if it is old (er, "experienced"), was raised by wolves and doesn't understand clouds.

(Full marks if you clocked that reference! Image courtesy of hayabusa.org)

Has anybody else found themselves in a similar position? Do you have any issues with driving? Feel free to open up discussion!

Wishing you all many spoons

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