Wasted Years

So, understand

Don't waste your time always searching for

Those wasted years.

Face up, make your stand,

And realise your living in the golden years.

Iron Maiden - Wasted Years

We could call this a belated resolution for 2015, but it's going to take some explaining. You, my readers, seem to enjoy it when I have a bit of a rant - watch this space. It's going to be a rough crossing!

We as people are no stranger to the fact that, like it or not, we're bombarding by advertising. In the field of health and beauty, that advertising does only one thing: it reinforces the narrow societal standard of what health and beauty look like. There is no variation, it looks one way and one way only. If you don't look that way, well, you don't have a place in this society, peasant scum!

In my early twenties I not only became vastly more aware of the existence of this standard, but also became far more cognizent of the fact it is a huge problem unlikely to be solved any time soon. I then set about putting a lot of effort into rejecting it.

Firstly, I'm 5'3". No amount of exercise or wishful thinking will make me supermodel-tall. I'm also British and typically British-woman-shaped. Even if I carried not even an ounce of spare on my legs and backside, they'd still be the largest part of my body. My frame is built  that way, and years of horse riding, skiing, swimming and plenty of other activities have created a fair amount of thigh muscle that won't shift in a hurry. Since I booked my first lesson in returning to horse riding this weekend, I'm not exactly doing anything to disencourage maintaining that muscle.

Why am I telling you all this? Because recently I've noticed I'm back-sliding on all that work on rejecting the tsandard and being happy with me for me. I don't think I can pinpoint when this started, but it's been creeping up on me for some time now. It's finally reached the point where I can't really pretend it isn't there any more.

When in a reasonable mood, I can easily say this has been compounded by inability to really exercise for a couple of months post-surgery, a tendency not to eat properly for those couple of months because I was eating what was comfortable and easy to chew, and spent a fair amount of time swinging between no appetite at all and wanting to do this:

(Image from thisfelicitouslife.wordpress.com. Original "X all the Y"meme from hyperboleandahalf)

In some part it stems from a time last year where I put a fair bit of weight on. Being me, it went to one place and one place only. In my no doubt slightly skewed view, my arse was well into the realms where it could consider applying to have its own solar system with a more than reasonable chance of success.

I appreciate to some people that would be no bad thing. I however have always been very bad at accpeting changes in my shape as they don't occur very often. So infrequently in fact that I have no idea what to do save fly into a state of mild panic.

Hey, if you're going to overreact you may as well commit.

Now, I've lost all that weight and I'm about back to normal. You'd assume everything would be fine, but it isn't. I'm definitely still in "not good enough" mode. Now there's nothing wrong with wanting to improve a particular area, but it's more than a little unhealthy when your expectations become inflated and unrealistic, which mine certainly are verging on.

In doing a quick bit of internet research for this post, it astounds me just how many aids there are in feeling unsatisfactory within easy reach of a few taps of a keyboard. Weight calculators which take no account of muscle to fat ratio or general frame before they brand you morbidly obese. "Shape" calculators which are frankly nothing short of insulting unless your measurements result in "hourglass" - which we all know is the only valid shape if you're a woman and want to take up space on the planet. I'm a person and not a piece of fruit, thank you very much (I get "pear" shaped as often as not).

I think the point I'm circling around here is really one of just how insidious this sort of thing is. There is absolutely no such thing as "perfect" but it's surprisingly easy to become overwhelmed with the expectation to achieve it nonetheless. And do you realise what we do each time we buy into the instantaneous flawless skin, effortless weight loss and general impossible "glow" we're sold?

Yes, that's right. We reinforce the standard, each and every time.

I'm not sure if the same can be said of men, but women in particular are expected and encouraged to compete with each other instead of hold one another up. It's often difficult to make an innocent compliment without it being analysed for agenda and hidden intent for this reason. Said expectation not only leads to a lot needless unhappiness, but also to the idea that only one shape or size - the opposite of said standard is "allowed" to feel inadequate. We struggle to accept that everyone has "fat" days, and most people have some part of their body they like less than another and would be willing to change. It's an entirely human thing, and despite what advertising may suggest we are indeed all human.

We would do well to realise that we're all in the same boat. We would do better still to recognise that with a not insignificant personal effort, we can choose to ignore it too.

So, this is my late resolution. I'm going to kick this unhealthy line of thought and work hard at self-acceptance instead. I've managed it before, so I suppose I get the added bonus of having proof it's possible. I'm sure plenty of us have wasted years and years in pointless self-flagellation on this topic.

How about we be a bit kinder to ourselves? You might not always appreciate it, but there's nobody else in the world looks exactly like you - no matter what size, shape or weight you might be right now, because those three things will be fluid throughout your life.

We should maybe remember that this in itself is something worth celebrating.

(One this note, a new motto: "I have a Bridgeburners top, therefore I am by default mind-blowingly fabulous"
That should work.)

Don't mind me, I'm going back to swearing at Ebay in my attempts to find a new dress for Valentine's Day. Why I do this to myself I'll never know - I HATE shopping.

Anybody have any thoughts on this topic? I'd love to hear them. Did you make any similar resolutions?

Wishing you all many spoons xxx

Uprising

They will not force us.

They will stop degrading us.

They will not control us.

We will be victorious.

Muse - Uprising

And victorious we were! Those following my escapades in hopsital recently will be happy to know the Purple Wedding Surgery went very well indeed. The kin- er, tumour is dead!

I've now been home from hospital ten days, and my stitches came out four days ago. When I went in for the stitches to be removed I received the best news ever in time for Christmas - Joffrey wasn't a cancer. Plenty of people jumped straight to the conclusion that my hospital mucked up, so I'm not going to beat about the bush in their defense. None of my clinical team had ever seen a benign tumour behave in the way mine did, so they would have been in very dodgy territory indeed to have assumed to leave it alone. As it is, the news is tremendous and the hospital now have my signature to keep Joffrey for research - I like to think they're going to poke him with sharp things many, many times. Serves him right. 

The healing process has been relatively uneventful. The scar itself is knitting very neatly and aside from one day when the pain level was tremendous (as in, waking up and pretty much screaming the house down level of pain) it's been nowhere near as unpleasant as I expected. I managed to drive a short way yesterday for the first time and have been out and about a couple of times. I still tire ridiculously easily however. 

(There you go. It's nowhere near as angry as I was expecting, and it looks neater every day.)

There are some other side effects - my body can't quite figure out balancing saliva levels at the moment. My throat is permanently dry, so I'm drinking water as if it's going out of fashion and that makes the level bounce. I'm constantly alternating between a dry throat and a runny nose. It is already better than it was thought and will only improve. 

There was some fairly hefty damage to the nerve controlling my lower lip on my right side. I've seom exercises to do, but at the moment it doesn't really work properly. However, that also will hopefully improve over the first six months (although according to my surgeon full recovery is unlikely). I can live with that!

Luckily, most of the scar will be under my hair anyway so you will be unable to tell, and from a distance the portion that is clearly visible already looks like just a fold in the skin. I really can't fault my surgeon at all, he's done an incredible job. 

I'm still mildly surprised by what a shock something like this is to random passers-by though. I threw my hair up to try a dress on in a shop yesterday and the look the changing room assistant gave me suggested I'd brandished the Dark Mark and commanded her subservience. I mean, I haven't done anything to that photo above - that's what it looks like. Surely that's not that offensive to look at is it?

I understand it's something a little unusual and unexpected, but I think some of the horror-struck reactions are far from reasonable. Maybe it's swearing at people when I'm not looking or something. 

I could be on my own in this (not that such a concept has ever bothered me over much) but I'm quite resolutely not hiding the changes to my appearance. For the first couple of days out of hospital I was a little shy about smiling and laughing, because that's when you can really tell the right side of my lower lip isn't moving at all, and the muscles and nerve grew tired after only a little talking and so the change was more noticeable. 

After this though I shook myself and decided to get on with it - I refuse to be embarrassed about it or feel the need to try and mask it in some way.

We already have an unhealthy relationship with the idea of perfection as a society, but I do think it's a little sad if this idea has grown so unchecked that people can't handle the sight of a scar, or a slightly altered facial expression. Spending a week and a half processing the idea that you have cancer (although thankfully not the case) is a sobering reminder that there are so very many more important things to be concerned with. 

So, another photo. This was taken the day my stitches came out and I found out I definitely did not have cancer. I should probably be grinning like a maniac, but I'm taking baby steps with the damaged nerve. Slow and steady wins the race. 

It's not a perfect face, but it's mine and I'm quite fond of it. 

(Crooked smiles and accompanying new dimples are very this season, I hear *snigger*)

Hoping you all had a lovely Christmas, and wishing everyone a very happy new year (and many spoons!) xxx

Thin = Healthy

Oh please.

I don't usually consider myself a bad-tempered person. I'm usually pretty reasonable and generally I'm very level and cheerful. Occasionally however like everyone I will see red and then woe betide whatever the butt of my disapproval is. One such example of when I cross the boundary into an out of character temperament is when faced with an assumption that has been cropping up rather a lot lately in all sorts of discussions about chronic illness - that weight at either end of the spectrum is the sole cause of the problem.

OK, stranger. Let's say that I'm prepared to give your hypothesis even a moment's thought. Show me the medical qualifications with which you feel empowered to make such a sweeping statement. Nothing doing? So would you like to explain to me the relevant experiences of ill people which have led you to your false conclusion? The huge breadth of people you would have needed to meet and discuss this with in detail to have any hope of such a broad statement being remotely accurate?

Silence.

I'll tell you why you're silent. You're one of the ignorant masses who never pause to think beyond whatever Google tells them. You never give any thought to anything beyond the narrow boundaries of what society deems acceptable, and the actions of the mass media which enforce those standards. Bravo, bravo.

My weight has virtually nothing to do with my conditions. Interstitial Cystitis is an inflammation of the bladder lining - please explain to me how my weight whatever it may be could possibly prevent or cause such an affliction? No really, I'm waiting. I'd simply love to hear it. Obviously this is an area of biology and pathology I'm completely oblivious to so go ahead and educate me.

I dare you.

Fibromyalgia affects the joints, muscles and fibrous tissues of the body. Exactly how does my being "thin" stop the aches and stiffness, the sensitivity and weakness? Exactly what could my BMI (a flawed system to be sure) have to do with any of that?

When I first fell ill I lost nearly two stone in weight and I looked awful - there was nothing I could do and I was eating as well as I could with my rebellious digestive system. My explanations never stopped any comments of "You'd feel better if you just ate more" or "There's no point starving yourself to be thin".

(You most certainly are. Image from openmindhypnotherapy.co.uk)

Really? REALLY? Just who in the hell do you think you are?

First things first about me - I'm 5'3" and have a small frame. There's nothing I can do to change those two facts, and they define rather a lot when discussing size. I'm reasonably slim, but I work at it. The days of my being able to eat whatever I wanted and metabolise like a racehorse are gone, so I'm well behaved and the amount of exercise I do to keep the Fibromyalgia at bay is an enormous help in this regard.

I'll tell you a secret - I have no idea what I weigh. I don't weigh myself. Aside from if you have a medical reason for monitoring weight, I think it's a bad idea. It just seems too easy for self worth to become wrapped up in the number on the scales.

The heart of the matter is that the number on the scales only shows you one thing - a numerical representation of your relationship with gravity. When last I checked gravity was an infinite resource. Thin people are not wasting their allocation thereof, and bigger people are not *gasp* taking up more of it than they should. I'm fairly sure short of something catastrophic we're not going to run out of gravity.

The weight game is yet another hazard of an illness being "invisible". Weight sadly is visible, and it's all too easy for the ignorant to pin the problem on what they can see. Weight is not simply a matter or how much or how little you eat. I have known people who might eat like the proverbial four-legged herbivore but can't keep weight on because of inflammatory bowel conditions (one example cause), and still others who barely eat anything at all and still balloon in weight as a result of medications they have to take to have any hope of a productive day to day existence. Their weight is the effect of their illness, not the cause.

There is no difference between telling a thin person they should eat more and telling a bigger person to eat less, or exercise more. Either way you are being incredibly rude - whatever anyone else does with their body isn't required to match up with your idea of what to do with yours. In fact, nobody else's body is any of your business. Particularly when in the realm of chronic illness you're also being incredibly ignorant of the myriad of complicating factors which may determine the person's resulting weight - and how dare you presume to judge their eating and exercise habits as a stranger?

More importantly though, why is weight seen to be such a defining characteristic for us? Are "fat" or "skinny" really the most important things we could be as human beings? Are they really the standard by which everything about a person should be judged? Why is it seen as completely fair game to comment and expect no consequence for doing so?

A trick some people never learn is to engage their brain before they open their mouth. So many of us speak in ignorance when we should be quiet and learn, and in situations where we honestly do not have the right to comment.

You often hear this personified as "I'm a straight talker - I say what I think!" as if that's a get out of jail free card for whatever offence could be given by your words. Freedom of speech is not the same as freedom of consequence - and the latter seems to be what people are expecting when they envoke the former.

Happily for those of us less impressed with your behaviour, one day you'll meet someone who talks straight in return and I can guarantee you will not enjoy it in the slightest.

One final thing to remember, and it really sums up all of this post. Not a single one of us has to justify to anyone else the space (however much of it) we occupy in the world, and nor should we ever try to.

(Something to always keep in mind. Image from candidrecovery.wordpress.com)

Has anyone else been the butt of comments regarding their health and weight in this way? What did you do?

Letting the bee out of my bonnet and wishing you all many spoons xxx

"Everyone is a genius...."

Everyone is a genius. 

But if you judge a fish on it's ability to climb a tree, it will live its whole life believing it is stupid.

- Often attributed (falsely) to Albert Einstein, source unknown.

This post could alternatively be titled "All the reasons I'm not stupid". 

This is going to be a highly personal post. I may waffle and I might occasionally swear. Consider yourselves warned. 

I've mentioned several times in past posts the cognitive effects of Fibromyalgia - the dysphasia, brain fog and struggle with short term memory and straight up brain-being-on-strike moments. I wrote at length somewhat painfully here about dysphasia in particular. I admitted it was something I have trouble dealing with.

It still is. My worry of being seen as stupid because of the way it affects my speech and thought processes continues to weigh on me far more heavily than it probably should do.

To qualify that I should probably provide some background. Despite earning A levels that would have secured me a place at most universities in the UK, I chose not to go. One major reason was financial, and another was personal. Given the same timing of circumstances all over again I doubt very much my decision would alter. I made my choice and I can't say that I regret it - I've forged my way in my chosen career path successfully regardless and I'm quite proud of that.

However, when my partner occasionally points out that I have something of a chip on my shoulder about it he isn't incorrect. I do. Since leaving college I've worked in a field mired in academic snobbery and spent a fair amount of time around people more qualified than me. Most are too sensible to bat an eyelid at this - some few have made a point of it though. I always describe it as being as if the other person's opinion of my intelligence has fallen through the floor on hearing the words "I didn't go to university". 

Said partner doesn't agree that this is as much of a problem as I perceive it to be, and there's a fair chance that's true. I suspect after years of examples there's a certain expectation of mine that I subconsciously overlay on situations. That doesn't mean to say it isn't a legitimate concern over something that does actually happen however. 

Everyone has restrictions they feel they work against in regard to the expectations of others. Mine is the feeling that with some people at least there's a stumbling block named "lack of a degree" in the way of my being accepted as a clever person - which I am, truth be told. I don't like to blow my own trumpet, but I am at the end of the day pretty sharp. I'm not the sort of smart that's going to make any paradigm-destroying discoveries or take humanity forward into the previously unknown, but I am the much humbler kind you might like to have along for a pub quiz.

(I used to always say I knew plenty of useless trivia. This was before I discovered that all that trivia is actually just the thing for quizzes. Also yay for Scrabble!)

So with all that in mind it possibly makes more sense that I'm still fighting with the cognitive aspects of my situation. False assumptions are hardly disproved by an inability to find the words you want or form a coherent sentence. 

What do I do about this? Well, if I'm honest outside of people I am very comfortable with I let myself fade into the background of conversations if I'm starting to feel overwhelmed with the dysphasia or confusion. I can laugh at it with those closest in my confidence, but it's horribly difficult for me to do so outside of them. An unnecessary element of personal pride? Probably. 

One of the ways this manifests is that I can't successfully debate. I have well formed opinions, but I can't think on my feet quickly enough usually unless it's a topic about which I'm particularly knowledgeable. It was never a skill I had much practice with and I tend to want to go away and think about all angles of something. So, I'm not much good in that kind of scenario and particularly not with all Petunia's quirks.

Happily I can say some things survive mostly unscathed. My recall for facts is still very quick and my general knowledge is very good (hence the quizzes). I can still learn quickly and my creative abilities are all still there. I'm still something of a Constant English Literature Student - my brain won't stop analysing what I read for patterns and layers even when I'd rather it shut up.

These are all skills individual to me and you can also argue that they are forms of intelligence. We all have them, and they're all different.

Now, to wrap up the waffle. Given my feelings about my own intelligence and certain barriers therewith, I view intelligence as a gift. Having my natural ability compromised has brought that lesson home all the harder.

It stands to reason then that my biggest hatred in this context is reserved for people who use their intelligence of whatever degree to make others around them feel bad or look stupid. 

I don't care the context, there's just no need for it. If you're the sort of person who needs to do that to justify your self worth then you need to take a heck of a long look at yourself. It's pathetic.

We've all encountered this sort of person. They have the answers to everything (or certainly think they do) and deliver it all in the sanctimonious manner of assumption that they are always correct. Worse still if they can point out when you're wrong or make you look silly as a result of an honest mistake then they'll never miss the chance to take that opportunity up. They might correct your grammar as you speak, or interrupt you constantly at the slightest slip up. Excuse me for being blunt, but it's what I like to call really sodding rude.

If we hold intellect and knowledge to be skills, then like any other skill they can be turned to positive and negative effects. There's nothing big or clever in turning your own skill into something to attack others with when it would be as easy to use it positively to help rather than hinder.

If someone is mistaken, instead of laughing at them you could teach them. One of the reasons I like listening to people talk about things they are passionate about is that they're the kind of people you learn from - they'll tell you as much or as little as you like from sheer enjoyment of the topic.

(Image from mediawebapps.com)

It's often said that what you have to say about others tells an onlooker more about you than it does the person you're speaking of. So it is in this example - using intelligence to make fun of others DEFINITELY illustrates more about you than the person you're attacking, and it doesn't speak well in the slightest. If you're about to laugh at someone's lack of knowledge, it might be worth remembering that none of us can know everything there is to know no matter how hard we might try. That person you're looking down your nose at would probably outstrip you on a different subject purely because all our interests are different.

I don't respect intelligence and skill for their own sake half as much as I do what people choose to do with them. I've listed above the various things I cannot do well or at all with my own brain. I don't necessarily like it, but everyone should self examine honestly sometimes.

What I can do however is write. I could write negative and hurtful things in elegant prose, or I put said elegance to better use and try to entertain and inform as best I can.

This probably tells you something about me, and that something is that I'm an idealist whose expectations are often too high.

Sigh. Somebody had to take the job...



Any thoughts on cognitive symptoms or how they make you feel?

Wishing you many spoons xxx

"Bite me"

(Magic - it can get a guy killed. Image from waterstones.com)

Apologies for the title. I’ve had my head buried in Jim Butcher’s The Dresden Files for the last couple of weeks and some of Harry’s Chicago-isms are starting to creep out when and where appropriate. This topic seemed to be just such an occasion.

I’m temping at the moment, and in sitting on a reception you meet and speak to all sorts of people. Most of them I have to say are really nice, with the odd slurring alcoholic thrown in to make the day interesting (I’m sadly not joking).

However, yesterday I ended up talking to someone who fell into neither category. Whilst waiting to be met by their solicitor they commented that I was looking very pale and tired. My lovely colleague explained I was having something of a flare up and I mumbled something about it being nothing a cup of tea on my break wouldn’t sort out (this is Hannah-ish for “A screaming headache and a sensitivity flare-up and in-the-name-of-all-that’s-holy-this-dress-hurts”). Said person responded with “Well don’t you, like, wear makeup when you look that rough? It’s not as if it would be impossible to hide it. Why walk around looking like that?”

Now I’ve encountered this sort of comment before but it still left me pretty much speechless for a few seconds this time around. It didn't really upset me so much as surprise me. Aside from the fact it’s incredibly rude, what in the world do you say to that? 

Apart from “No I don’t because I don’t have, like, a problem with the realities of existence”?

I do appreciate that I'm a person not overly concerned by appearances, and for some people it's a much more important thing. In the person's defence I honestly think they thought they were being helpful - suggesting if I made an effort to look better I might feel better too. I don't know, that might even work for some people. Mostly I'm just making the point that the individual won't be gracing the hit list - we just come at life quite differently. 

To explain what I look like when I’m having a flare up I’m even paler than usual, drawn and generally start showing circles under my eyes from not sleeping well. I get the slightly glassy-eyed look sometimes too and I move about as little as possible. The point is I’m not exactly a visage of hellfire and impending doom. You are not going to need therapy after you’ve seen me in flare-up mode. If you’re scared of pale complexions then I suggest you’ve never encountered the British before. Pale is sort of what we do, and I’m firmly in the camp of those who choose to do nothing about it.

There are two main points I want to make with this comment in mind. The first I’ve had lots of practice arguing my corner with, and it’s the fact that make-up is not primarily a tool for other people’s benefit.

Anybody who’s about to chime in with “Oh, but women only wear it because they’re insecure!” or “They’re wearing it for male attention” – well, the door’s over there. Please use it.

(Excuse the language, but basically that's a short and succinct version of what I'm getting at. Image from cosmosimisear.blogspot.com)

Wearing make-up so you look nice is not something anybody owes to anyone else around them. It’s a personal choice based on how you feel and how you want to look at that given moment. It has frankly absolutely nothing to do with anyone else at all. 

There’s an oft-overlooked amount of artistry in the use of make-up and in self expression in general (of which it can form a part). Some people don’t feel right unless they’re fully made up; others only use minimal make-up or none at all most of the time. I’m in the latter category mostly because it’s all too much faff unless I’m dressing up to go out. Either extreme and everything between are all absolutely fine. And still none of your business.

With all that in mind, it is certainly not something you owe to people so sensitive they can’t deal with someone looking a bit under the weather. It terrifies me to think that some people are so smothered in our mass media’s impossible beauty standards that they have trouble dealing with reality. When I’m at my healthiest I’m still laughably far off supermodel calibre as are the vast majority of people – so where does the idea that you’re supposed to cover up flaws for the benefit of those around you come from?

Secondly and far more importantly – forgive me, but I don’t see my health as something I should hide. I’m not ashamed of it. The idea that it is something to be ashamed of and kept under wraps runs a little too close to the idea that the chronically ill are somehow “broken” for my liking.

The way I see it, Petunia isn’t contagious so I’m no risk to anybody else. That’s one of the small mercies of most chronic invisible illnesses. I also didn’t come by Fibromyalgia and Interstitial Cystitis through any fault of my own, so they aren’t as a result of any action or inaction of mine. They are the only two reasons I could think of for there to be even a modicum of shame or a wish to hide the reality involved.

The fact that I’m a “spoony” is a part of me. It’s no different from the fact that I’m good with a pencil, that I’m rather fond of power metal or the fact at nearly 25 I still can’t negotiate high heels with any success.

I don’t really hide any of the rest of me, so why should I hide that? If I ever did want to if would be for me and only for me – it certainly wouldn’t be for the benefit of anyone else.

In closing, I can happily inform you all that nobody has run away from me so far today despite the fact that I’m still flaring.

However, it is only half past two.

Wishing you all many spoons xxx

The White Feather in the Tar

A somewhat different post from me this week, but I thought it might be useful for those whose skin tends to suffer along with the rest of their body at the hands of their chronic illness.

I have two separate recommendations for people to try – one a general skincare range, and the other a make-up one. .

I can hear the people who know me well giggling already at the latter. I am to knowledge of make-up what Jeremy Clarkson is to political correctness. It might be fun to flirt with it on occasion, but in general we just don’t get along.

The skin care is the Bodyshop’s Aloe range. A set of the cleanser, toner and day cream were gifted to me for Christmas and I have now been using it for about a month on a daily basis.

To give some context, I’ve tried a lot of the brands which recommend themselves for sensitive skin in the past to no avail. My skin became so angry with the Simple moisturiser for example that I was almost waiting for the day when the inflamed redness along my cheekbones would start to spell out swear words.  

However, the Aloe range seems to be the Holy Grail for my skin. One of the best key indicators was that none of the three products caused any initial sensation – usually, anything I put on my skin causes an immediate burning sensation. Anyone who tells you “That just means it’s working!” is wrong – it means your skin doesn’t like it.

The Aloe products don’t do that and thus far I’ve had no reaction at all. The redness across my cheeks is pretty much invisible, and albeit the unevenness underneath is still present it is nowhere near as pronounced as it was. Remarkably even when I was in a full flare-up following losing Misty my skin barely altered, whereas previously it would have been incredibly noticeable.  Price wise a full replacement set would be about £15 and using them daily the individual products would probably last a couple of months.

(Image from productreview.com.au)

 Now, the giggle-inducing part. My mum visited this weekend and we went ostensibly shoe shopping - yes, I’m nearly 25 and still can’t shoe shop on my own because shoes are terrifying and don’t make any sense. The shoe mission was painlessly successful in the end and I started scouting for a proper set of make-up brushes.

I’ve been slowly teaching myself a couple of “looks” as it were – I highly recommend Lisa Eldridge’s make-up videos on Youtube for anyone wishing to try this themselves – and had come to the inevitable conclusion I actually needed to buy  some half-decent gear if I was going to have any chance of success. I still view make-up as something to play with when I’m going out in the evening or to something special in the day – it will never be a day to day consideration. Having said that though, it would still be nice to learn a couple of things to a good standard.

Shoring up some courage I went to talk to a lady at the Liz Earle counter in John Lewis. The name actually meant nothing to me but it turned out to be an accidentally wise choice.

Previously I’ve always avoided make-up counters like the plague, mostly because when I was first flirting with the idea of make-up when I was in college, most of the make-up counters in our local Debenhams and similar were staffed by in majority young girls who had nothing better to do but tear apart their hapless previous customers for what they looked like and the stupidity of their questions. In my head they were therefore havens of hairspray-scented cattiness and were generally very unpleasant places.

It’s probably not surprising therefore that the reaction I expect upon approaching a make-up counter and admitting my lack of knowledge is one of “What idiot let this creature out?”

As it happened this couldn’t have been further from the truth. The lady in question probably spent the best part of an hour with us getting a feel of what I wanted and tailoring her advice to suit, as well as happily giving tips and tricks that were outside of the “official line”.  She then proceeded to try some of the products on me and I ended up coming over a little emotional at the results. The difference is staggering when somebody professional does your make-up. I don’t generally associate myself with the subtlely enhanced and rather pretty face looking back at me.

So, why do I think Liz Earle is a good choice for people whose skin is sensitive and flares up?

Answer: because you can’t feel you’re wearing it.

(Apologies, but I don't have anybody else's face wearing the make-up, so you're going to have to put up with mine.)

The make-up is so light and breathable that the only way I could fully tell I was wearing the product was from the slight cosmetic-y smell I kept catching on occasion. I couldn’t actually feel it. By the end of the try out I was wearing a base, concealer and blush on my skin and the lightness of it was tremendous. Score one against my idea of foundation being the sum of all evil and feeling like having wet cement painted on your face.

To further prove the fact, I took the make-up off last night and today my skin is clear. No redness, and it didn’t require the usual scrubbing away with water to the point of my skin actually feeling sore that I usually associate trying to remove make-up at the end of the night.

Liz Earle products get further plus points for their policy to not test any of their range on animals, and the fact that the make-up brushes and accessories are made from 100% man-made fibres.

The downside is it isn’t cheap. I spent a slightly eye-watering amount, but in hindsight it’s not as if I’d have to spend anywhere close to that amount in one go again in the future. You’re never going to be replacing everything at once (one hopes) and in my case the sparing usage will mean they last forever.

Talking about make-up and skin care seems to encourage a negative attitude from some people, that any interest in such makes you overly vain or alternatively that you must be attempting to hide behind the “war paint” because of crippling insecurities and confidence issues.

From a chronic invisible illness perspective, there's the even more irritating assumption that since the use of cosmetics can you make you look more lively and awake, "better" if you like, then you must be feeling better. If make-up is your day to day routine this can even lead to the assumption there's nothing wrong at all. I grow weary of the explanation of this, so I'll end with a simple thought.

Sometimes self-expression is just that and nothing more. 

I don't think I'm turning horribly conceited or hiding from anything (especially not my illness) in making some forays into make-up, I do look forward to on the rare occasions I want to look a little bit special being able to do so without the fear of angry, sore skin as a consequence.

I hope those suggestions are useful for others – please do let me know!

If anybody would like the details of the specific things I’m wearing in the photo or the Aloe skin products I’m using, please do shout up as I’m happy to share.

Wishing you all many spoons xxx

“…To be good great and joyous, beautiful and free.”

Regular readers will know from previous posts like New Horizons, Rainmaker and "All you have to decide..." that I have some very strong feelings on the topic of self confidence whether related to chronic illness or not. It’s a delicate and sometimes elusive sense of self that I believe everyone has the right to be able to find. Poor or shaky self confidence can have a negative impact on so many aspects of a person’s life, and I really think it’s something that should be treated with more importance and compassion than it generally is.

In approaching the question of whether suffering with a chronic health condition affects self confidence, I think it would be incredibly foolish to suggest otherwise. No matter what it does to you physically or mentally, it’s not likely to go away or if it does it won’t do so for a long time. Some people’s conditions can be managed well; others can barely be contained at all. Often the health professionals we go to for advice cannot help and long ago ran out of options for suggestion.

I think one of the particular ways this can manifest is when you have a partner, and even more so a healthy one. It’s surprisingly easy to fall into the trap of comparing everything they do to what little you might be able to manage and wondering at the fact you come up so short. It’s entirely human for both them and you to feel some frustration with this – but should any inkling of that surface then those feelings of anxiety and insecurity are only amplified.

One of the key things I think is incredibly important for this (and in a wider sense also) is to not put your self esteem into the hands of another person, whoever they are. In the same way you shouldn’t let the opinion of strangers have power over your confidence, although it’s harder it is the same logic to be applied to a partner or a close friend ill or otherwise.

More notably in the case of mental illnesses like depression and anxiety, it is important to remember the difference between the illness talking and the person behind it. There have to be boundaries in terms of unacceptable behaviour, but there should also be carefully guarded walls around yourself and your own confidence.

(Now this my friends is a wall.... The Wall From the South, Game of Thrones Wiki.)

I wouldn’t insult anyone by suggesting this is an easy lesson to learn. It isn’t, and I’m still in the process of learning it myself from both sides of the situation.

Furthering that note, for the ill person it’s equally as important to only be living within your own expectations and not those imposed or implied by others. Nobody knows your own body, your own condition and its entirely individual limitations the way you do – you live in and with it. Therefore you are the only person who should be setting expectations, and your thoughts on the matter are the only ones you should be paying attention to. When the expectations of others are unrealistic, you are not bound beyond all reason to attempt to achieve or exceed them. As important as it is to push and to try when dealing with long term ill health, it’s equally important to know when to say “no” to something and have the confidence to refute it and walk away before you risk yourself and your health.

When I say other expectations, mostly what I mean is the condescending kind lacking in any compassion. If you’ll excuse the vulgarity for a moment, it’s what I like to call “fix it bullshit”.

You’re too ill to hold down a job out of the house – make a job for yourself! You’re unemployed? Move to where there are jobs! You’re ill? Think yourself better! You’re unhappy with your life? Change it! I did X Y and Z which means everyone else regardless of circumstances can do the same!

I think that’s enough illustration of the attitude I’m talking about – which in other words means I’m going to stop typing it before I become too enraged with the stupidity of it all. In other words, it’s a complete refusal to live in the real world and understand that said world will not always dance to their tune no matter how self important they are.

That kind of attitude and expectation is potentially damaging to give heed to. We are all different and all faced with different challenges and situations in our lives. Not all of them are of our doing, and not all of them are within our immediate power to alter. Some things just have to be borne and cannot be fixed by just willing it to be so. There’s nothing wrong with tenacity and the will and drive to change your situation for the better, but it cannot be applied across the board to every circumstance. One size never fits all.

In the case of the chronically ill, our bodies and immune systems don’t want to stay in rhythm with the tune that we would prefer, and so we have to learn a new dance. That is a very different discipline altogether to the “fix it” approach – tapping your heels together three times and being whisked off to the Emerald City to ask the Wizard to fix it would be about as effective as “think yourself better”.

(I am unashamed to say that at six months away from a quarter of a century old, I still want a horse of a different colour.

Image from ollygreeneyes.blogspot.com)

There comes a point when you need to be able to recognise that working within your own limits and occasionally stretching them is still something to be incredibly proud of. The fact you can’t necessarily achieve what a healthy person could in your shoes should in no way be a cause to lessen that pride in yourself. You alone know your spoon count for the day, so you alone know what you can potentially achieve. You alone know when it’s time for a well-deserved day off also. You’re allowed those. Who is to tell you otherwise?

Your self esteem is yours and yours alone, and it is within your power to be kinder to yourself and to not entrust that esteem to the hands of others, no matter how close they are to you. You can reject what the wrong people tell you, and you can reject words said in anger and pain if you wish to. You do not have to listen.

In all the world there is only one you, and there will never be another. Each of us has a unique viewpoint and voice, and perhaps something only we can do. Each person has their own kind of magic. Each of us has it within ourselves to be as the title of this post – good, great and joyous, beautiful and free.

If your path to that doesn’t suit the expectation of those around you, maybe that isn’t worth worrying about after all.

Wishing you all many spoons, and just a little magic xxx

*The title for those who are wondering is an excerpt from the end of Shelley’s Prometheus Unbound. “This, like thy glory Titan, is to be good great and joyous, beautiful and free. This is alone Life, Joy, Empire and Victory”.

It’s a quote I’ve been quite fond of for some time, and for extra trivia it’s also a part of symphonic metal band Nightwish’s pre-stage ritual.

Don’t say I never tell you anything completely useless.

I solemnly swear that I am up to no good

In furthering my having spoken about retreating into books, I thought it was about time I covered this. The thing is despite however much I love certain series above others, they’re not always what I automatically go to. Recently, having burned myself out with too much heavy going Malazan in the shape of Ian C. Esslemont’s Novels of the Malazan Empire series (I’ve got Blood and Bone to read when I feel up to it again), I went back to my safety net of “switch brain off and enjoy” books, the most notable of which being J. K. Rowling’s Harry Potter series, which I re-read in the space of a week.

(Image from absolutevanilla.blogspot.com)

The fact is as much as I’d like to say that a good old reliable doorstop of a tome is the way to go, it isn’t always. Sometimes thinking about concentrating on a book that lengthy (and particularly if it’s a heavy going one such as the fantasy I usually read) is tiring in itself, let alone attempting to actually pick it up and read it. However, if I have absolutely nothing to read then I go ever so slightly stir-fry crazy so I have a few series and individual books that I first read when much younger that I return to at times like this. Typically they are the sort that sit awkwardly in the not-quite-mature-adult-but-not-really-for-young-teenagers-either area, and they serve as easy time-passing when I’m not up to anything more demanding.

Some other examples include Elizabeth Goudge’s The Little White Horse, Jenny Nimmo’s The Snow Spider Trilogy, and Peter S Beagle’s The Last Unicorn.

One of the joys of that list and the Harry Potter books themselves is that given the number of times I read them through my teenage years, they’re even readable on days when my short term memory isn’t playing ball, because I probably know most of them word for word by now.

 

I thought they deserved a post of their own, mostly because they are a subject I am just a little bit touchy about. I’m not your stereotypical rabid fanatic who can’t handle any criticism of the books – there are plenty of valid ones and I’ve offered some myself in the past. You’ll never hear me stand up and say Rowling’s stories are the best thing ever contributed to literature because I don’t believe that to be true.

 

I’m also well aware that the series by its very nature is not going to be plenty of peoples cup of tea, and that’s completely fine too. It would be boring were we all alike. Personally I have a lot more time for the criticism of people who’ve actually attempted to read the books than I do those who just sneer for the sake of it, but I never claimed I was perfect.

 

(Did I say I wasn't a rabid fan? Whoops. This Marauder's Map dress is the lovely handiwork of BabeBoutique's Ebay shop!)

 

However, I get sick of feeling that I have to re-argue my status as a highly intelligent human being because I like the Harry Potter books. Thoroughly sick and tired of the look on people’s faces which clearly bespeaks “You like something this childish, clearly you have the intellectual capacity of a child. Pity, I thought you were smart.”

 

And there was me thinking that personal taste was about just that – personal taste – and not an immediate marker of intelligence or worth. Silly me.

 

So, here’s my case for why I like the series. I don’t expect to change the opinion of anyone who doesn’t, and more to the point I don’t actually want to. However, you should never cast aspersions unless you’re prepared to hear their rebuttal.

 

The first thing to bear in mind is that when I initially read the series I was a part of the original target audience. When the last book was released I was 17 coming up 18, much the same as the core characters. Whilst acknowledging all the other brilliant books I was reading throughout my adolescence, it wouldn’t be untrue to say I essentially grew up with the series. For me, part of its appeal is that it’s a very true coming-of-age – the settings and the scenarios may be entirely fantastical but the human elements are very true to life. The themes are criticised for their simplicity, but regardless they are themes I responded to and continue to respond to as an adult. Despite plenty who’ve expressed the opinion, it doesn’t actually make me a naïve person – it’s just an expression of the things I hold to be important.

 

For a person who has always loved language, I appreciate the way this is used (sometimes not overtly) and the interweaving of Latin, Greek and French influences in the vocalisation of spells. There’s a lovely usage of Victorian flower language in the first book which without knowledge of the same passes easily as an unobtrusive piece of dialogue. It’s a tiny little glimpse of foreshadowing you are never intended to see until after the ending, and when you do it’s hard not to appreciate how clever it is. Things like this don’t make a book, but they’re something I really appreciate nonetheless and they make me smile when I see them.

 

One of the principle criticisms I hear of the books is their lack of intelligence, and that just tends to make me roll my eyes and decline to comment. On the face of it they’re a series of children’s fantasy books (and I expect that’s where this sort of comment comes from), but there’s a lot more going on beneath the surface including some conscious mirroring across generations and the Macbeth-ian question of the effect of prophecy. There are nods littered all over to the likes of Chaucer and Aeschylus, to the folklore not only of Britain but of wider Europe and beyond. If you’re going to throw the question of lack of intelligence in a story for young people about, leave it where it belongs in the pages of The Twilight Saga.

 

The crucial nail on the head point for me was that while I was at secondary school, I was a prodigiously academic and bookish child who loved to learn and definitely had some slight “know-it-all” tendencies. I had an overbite which was later corrected by braces, and I had an even bigger and wilder mane of hair than I have today. Interestingly, some of that is how Rowling describes herself, admitting that the character of Hermione Granger is an exaggeration of herself as a school girl.

 

(Originally included in the two disc edition of Deathly Hallows Part 2 "The Women of Harry Potter" makes an interesting watch.)

 

I’m sure most people say this of themselves, but as a further point I was far from an attractive teenager. My other half says differently having seen an awful annual school photo my Dad still has at home, but then he’s biased and probably also aware that he’s too tall to sleep comfortably on our sofa.

 

With the popularity of the books and the release of the first film, suddenly there was a widely-known pop culture reference to a character that was just like me. Not only is Hermione bright and bookish and herself the owner of a wild mane of hair, but she gets to be a heroine without ever having to be raving beauty. A rare thing indeed.

 

The comparison grew more amusing with age, as a school friend later told my parents that by 14 I’d mastered a facial expression (often turned on both him and another friend) that was pretty much the silent equivalent of Emma Watson’s despairing question in the first film - “Honestly, don’t you two read?”

 

Did any of this make the five years of bullying any better? No. It never stopped a single unkind word, but it did make me feel a little bit better in myself. It was a small and constant encouragement that although I might have been weird in the context of my peers, it wasn’t necessarily a bad thing. I didn’t understand it fully at the time, but looking back now the books freed me from the expectations of those around me in a lot of small ways which helped to define the person I became.

 

That’s why I’m a little defensive on the subject of the Harry Potter books. In questioning my intelligence as a fan of the books, you’re questioning something which had a very powerful and positive effect on me as an adolescent and in some ways questioning a part of who I am now. It might sound over the top, but then I’m not really given to feeling that passion and emotional connection with anything is something to be ashamed of.

 

When I watched the speeches at the premiere of the final Deathly Hallows film, I don't mind admitting there were some happy tears when J.K. Rowling closed her thoughts with "The stories we love best do live in us forever, so whether you come back by the page of the big screen Hogwarts will always be there to welcome you home."

 

Ultimately I’m touchy because I have a lot to thank Rowling for.

 

Book by book she helped a little girl with a crippling lack of confidence find out that despite her bookish and intelligent nature, she had every bit a capacity for magic as anyone else.

 

Mischief managed.

Anybody else a fan of the Harry Potter books? Fan or not, I’m happy to hear opinions on this post, as well as to hear if anyone else has these sorts of “switch off” books or films that they keep returning to?

Wishing you all many spoons xxx

Find the Real

"Shouldn't you at least be wearing makeup or something? I mean if you look that ill you could at least attempt to cover it up."

(Almost accurate for the physical reaction I was tempted to give. Image from cheezburger.com)

I wish I’d made that up, but it is in fact what I was greeted with at work. Beyond the fact it’s an exceptionally rude comment to make it raises a couple of potentially interesting points of discussion.

The first is very general, and that is that frankly it sickens me how much emphasis is put on appearance, and why it’s something that everyone and their aunt feel entitled to comment on. I recognise that the fact I don’t wear makeup most of the time puts me in the minority, but the decision belongs with me. I have better things to do first thing in the morning when I get up (optional reading: I’m too lazy) and I can only imagine the state my skin would work itself into if I used makeup every day.

Most importantly though I just don’t feel the need to do so. Within my job I meet clients and visitors on occasion, but as long as I’m smartly dressed and the mane is tamed (frankly it’s something of a spectacle in itself when it isn’t) then I consider that I’m fulfilling my role correctly in a professional environment. I work in a law firm and not a fashion house, so I don’t believe for a second that clients form their impression of a law firm’s competency and professionalism on how much or how little makeup the female members of staff wear.

For most other occasions, makeup in my head is just part of the ritual of getting dressed up to go out somewhere be it gig, restaurant, club night or anything else. I have the odd day at a weekend where I wake up and feel like wearing some, but mostly it’s just not something I’m overly interested in.

However, I wouldn’t for a moment look down on people who do wear makeup to work, to pop round the corner to the shops or indeed anything else. If they want to, that’s their decision, and despite the fact I don’t use it often I do have an appreciation for just how much skill and artistry can be involved. The point about a “natural” look is an amusing one for me, because it takes a lot of hard work to create the illusion of wearing no makeup when you are in fact doing so. I’m frankly in awe of people’s skills because I’m well aware mine are just a little shabby.

For example my infrequent attempts at mascara usually go rather like this: poke myself in both eyes several times, end up with more mascara on my face than I do my eyelashes, despair at the clumpy mess I’ve created and then essentially just give up.

If I somehow manage to avoid that then the shock uses up most of the spoons I was planning on using to go out in the first place!

One of the tiresome attempts I’ve often heard to bolster the sort of looking down the nose that goes on in terms of makeup is the excuse of “They’re just wearing makeup because they’re too insecure about how they look without it!”

Some people do indeed do that. Others don’t. I’d really love someone to meet the challenge one day of explaining to me what effect they think this has on the type of person someone is, or what it has to do with the way they behave towards others.

More importantly I’d love them to explain why exactly it is anyone else’s damned business.

Makeup is just another part of self expression, and everyone’s right to dress and look how they want to in order to express themselves ought to be defended whether it’s something you personally like or agree with or not. Next time you want to complain about what someone wears, think about this: are they making you wear the same thing? The likelihood is no, so leave them be.

(“I’m-going-to-pretend-I-don’t-know-about-the-unachievable-bar-men-and-women-will-hold-you-to-despite-how-much-or-how-little-makeup-you-choose-to-wear-and-I’m-going-to-invalidate-your-choice-regarding-wearing-it-because-what-I-personally-find-attractive-should-be-law!”

Albinwonderland being brilliant once again.)

The second point is more specific – what kind of selfish and blinkered individual expects that anything they are uncomfortable with should be removed from their sight, allowing their rosy little existence to remain unblemished by its corrupting presence? In the 21^st century are we really back to “we’re scared of what we don’t understand”?

Nobody, regardless of whether their illness is temporary, chronic, incurable or even fatal is obliged to hide it for anyone’s comfort but their own if that is what they choose. Injury, illness, ageing and any number of other appearance-altering realities are a part of life. For illness of a more long term nature it’s also a part of your person.

Would you ask someone to hide their sexuality, their interests or their heritage just because you were too narrow minded to be comfortable with its expression? Why is poor health any different? If it’s a part of your life then why should you be expected to feel ashamed of it?

It’s the same argument used by many that “fat people should cover up”. No, they shouldn’t, not unless they want to. They’re as entitled to express themselves through fashion choices, makeup and aesthetics as anybody else. They don’t look “ridiculous” or “stupid” or “horrible” or any other negative usually carelessly thrown around, they’re just outside of the teeny tiny box of what you consider to be the parameters of beauty, and woe betide anyone who disagrees with you.  

What happened to the attitude of “Not for me, but each to their own”? If you’re too immature to accept the choices of others which fall outside what you personally find attractive or comfortable then I truly do pity you.

Why? One day you’re likely to be ill yourself. Hopefully it will be transient and of short duration. It might affect your weight in one way or another, or give you uneven skin or swollen joints or a bloated abdomen. If people then make those sorts of comments to you, asking why you haven’t attempted to mask the problem because they find it unsightly, you’re feelings will understandably be hurt. Maybe, just maybe it will teach you a lesson. 

On something of an amusing tangent, I didn't actually look ill today. I do have flare ups that are quite visible – if they last more than a day or so I start to look a little sunken around the eyes and washed out. Today however I was my completely normal exceptionally pale self.

According to a friend of mine my ghostly complexion is going to be the death of cameras one day, given it took him about six tries to take the photo below. The point is as long as you’re human and not a camera then the likelihood is my rather British pallor is not going to be that dangerous.

(I’m not convinced I believe you Shane.)

No person on this planet exists to be molded around any other individual’s comfort and convenience, so none of them deserve to be shamed when they don’t fit the narrow boundaries of the perfect little world some people live in.

I’m pleased I don’t have to live there with them.

Wishing you all many spoons xxx