Spoonie Blues - and PhD muse[ings]

Majorly shitty month thus far, hence why I haven't posted; it would only be full of rage and misery, which while cathartic, would prove a very boring and depressing read.

I have other plans for today's post but, to cut a long story short, I've been stuck at home for pretty much the whole of the past three weeks, with no access to my own car, while mother has been driving back and forth to my sister's – who's recovering from a very small, totally non-life-threatening operation.  Damn, how bitter do I sound?  In normal circumstances, of course I wouldn't begrudge anyone receiving help from their mother, particularly when she already does so much for me, as my main carer.  However, nothing about my family is 'normal', or simple – whose is, I hear you scream – good point, but when you take into consideration that we moved away from living with my sister because she's a manipulative, immature, abusive and violent bitch, you can kinda see why it might grate on me.  I haven't said a lot about this in previous posts, maybe the odd hint, cos it's so difficult to discuss, and I almost feel embarrassed when I do have to talk about my family sitch.  Stupid, huh?  Anyway, the whole point of this blog was to be honest with my readers, so there you go; [some] honesty.  So, because mother's had exclusive use of the car – my car, paid for by me, via Motability – I haven't been able to get out with my enabler, SB.  And no, I couldn't have just gone for a 'walk' to town, or round the park with SB, as that would've involved mother getting me into my wheelchair before she left early in the morning, and me staying sat up all day, which I can't physically do (see The Spoon Theory to really make sense of this).

I have, consequently, really struggled to get through this month, and have had some epic rows with mother; brought on by a combination of cabin fever, boredom, frustration, exhaustion – from days of early starts – and a general feeling of loneliness and isolation.  If it wasn't for daily heart to hearts with The Wife, visits from VW and @FranBMan23, and getting out to work on two of the days, I don't know how I'd have coped.  Still not feeling great at the moment; having some pretty emotional, angry, and stressful bouts, and I have scared myself at times into thinking I'll end up like I was last year/end of 2010.  I'm hoping I've come through the worst though; mother isn't up at my sister's quite so much now, and from next week I should have a bit more use of my car.  Here's hoping, cos I'm not sure I can handle this way of 'life' for much longer.  I'm banking on the testing of a new, specially made sling on Friday that, if successful, would mean – once installed – I could be lifted and moved by my carers, rather than solely mother.  As much as I'm worried about it – the thought of anyone, or anything, new lifting me is pretty terrifying, on account of the slightest movement potentially causing a broken bone – I desperately want, no, need, for this to work.  Maybe then I'll achieve the independence that so many spoonies, quite rightly, seem to acquire so easily.

Right, on to the actual topic of this post; my PhD.  I wanted to put into words what I'm intending to research, as it's all jumbled up in my head at the moment, so it needs some organisation anyway, and what better way to do that than in public.  These are all initial, very rough ideas that I've had, based on the findings of my MA dissertation, and before I'd done any proper research.  I'm sure the plans will change, but I'm living in the moment, so here goes.

For my MA dissertation in Film, I wrote about issues of girlhood, and the representation of young women in the Disney film; specifically The Little Mermaid (Clements & Musker, 1989) and Beauty and the Beast (Trousdale & Wise, 1991).  I am going to share this work over the next few posts, so bear with me; I don't wanna give away any spoilers at the moment.  What I can say is that, as both of the above films were based on fairy tales and folklore, I followed the progression of these two stories, charting the differences between the representations of the little mermaid (Ariel, to those of the Disney generation), and Beauty (Belle).  These characters naturally became the main focus, but during my research, and throughout the course of writing up, Ursula (a.k.a. the Sea Witch) kept rearing her [very ugly] head, and proved difficult to ignore. 

Ursula brought up some very interesting issues of femininity; of being cast aside once you reach the age of infertility and unattractiveness – according to society, not my belief, honestly.  Yet, cos Ariel and Belle took the lead roles, Ursula kind of faded into the background, and didn't get as much recognition as she'd have liked.  Indeed, The Legend, who second marked my dissertation, and whose advice I will always follow to the letter, said that she would have been interested to read a lot more about Ursula, and her 'issues'.  Hint for a future PhD topic?  Methinks so.  Thus, the seed was planted, and I'm intending to follow up this idea further, by means of a PhD.

Current working title is 'The Other Woman; Monstrous Femininity and Ageing in the Disney Fairy Tale', and I'm intending to broaden my horizons – and word count – by looking at a much wider range of Disney films, and comparing them to their 'live-action' counterparts.  Fairy tales are totally in vogue at the moment, what with Sky's current ad campaign, Channel 5's Once Upon a Time, and the recent release of Snow White and the Huntsman (Sanders, 2012), to name but a few.  Moreover, according to HH – who was my very brilliant dissertation supervisor – there's loads of research being carried out on ageing, and it just so happens that the Arts and Humanities Research Council (AHRC) – who I'm banking on for funding – are looking for people to research 'New Dynamics of Ageing'.  Um, yay.  If I ever get to writing a proposal, I will play on this muchly. 

By 'Other', I mean the process of 'us' versus 'them'; primarily associated with Said's 1978 book, Orientalism, where the creation of a society:

'[...] whether Orient or Occident, France or Britain… involves establishing opposites and otherness whose actuality is always subject to the continuous interpretation and reinterpretation of their differences from us‘. (1995:332)

My PhD thesis will [hopefully] be on a much smaller scale than continental politics, and the idea of the 'Other' will instead be used twofold.  First, as a kind of play on words; not the heroin, the other one, and also Other with a capital O; the women that offer something different, oppose the 'norm', aren't seen as 'us'.  This may be cos they aren't beautiful, aren't married, are childless or infertile, etc.  Basically, anything that differentiates these women, such as Ursula, Maleficant, The Wicked Stepmother, from what we – us – deem socially acceptable, or traditionally conventional. 

By 'Monstrous Femininity', I'm of course referring to the brilliant Barbara Creed's The Monstrous-Feminine: Film, Feminism, Psychoanalysis, which I haven't actually read yet, but I'm sure it's amazing.  According to the blurb, The Monstrous Feminine addresses the way that female monstrosity nearly always shares a bed with issues of fertility and mothering – ooo, rhymes with Othering – think the alien in Alien (Scott, 1979).  So, like, all the baddies mentioned above don't have biological children, and seem to exist purely to make the younger, hotter, more fertile protagonists' lives a misery. Wait, this is sounding all too close to home... Anyways, I haven't even begun to address the question of why these women are portrayed in this way; though I have touched on it very briefly in my review of Snow White and the Huntsman.  Maybe it's jealousy, or bitterness, over all the privileges Third Wavers have over the Firsties, or maybe society – us, again – deem older women as useless, due to their inability to reproduce and, cos they're so unattractive, they must be cast aside, to go live in caves.  Again, not my views.  Who knows; it's probably a combo of all those factors, plus a bunch more.  Only time, and a whole lotta work, will tell.  Although, if anyone does have an answer, please share!  I'm not so attached to the idea of giving up my life [and sanity] to research this baby, that I wouldn't welcome any input. 

Next, cue a big load of post-feminist argument – which I actually love picking apart – about the body beautiful, women doing it for themselves, Third Wave gals versus First Wave old cronies, and I have myself a very basic, yet not bad – even if I do say so myself – idea for a thesis.

That's where I'm at right now.  I've done no reading, since researching my MA, and have watched maybe a tenth of the films that I need to.  But I'm starting to think about it; progress.

KT xxx

Snow White and the Huntsman: Review

I promised I would reveal the subject of my [hopefully] future PhD in this post, but went to see Snow White and the Huntsman (Sanders, 2012) yesterday, and thought I oughtta write a wee review, for my sake as much as anyone reading this.  SWATH – which is apparently how the cool kids refer to this film – will very likely feature in my PhD thesis, so it made sense to write down my initial thoughts anyway, and package them as a review, for the greater good. 

*SPOILERS*

I won't go too heavily into the plot; a) cos that makes for a really boring read, b) I'm starting to forget bits of it already, so probably wouldn't be able to give a very reliable synopsis and c), I kinda missed the first 10 minutes, because I was late, and because Vue obviously started the film bang on time.  My bad though; I shouldn't have stopped at Tesco on the way to stock up on contraband.  Anyway, from what I can remember, I will say this; It Was Brilliant.  I've skimmed through a few reviews since yesterday; the majority of which are pretty negative.  The gist being that the film is too big, and too beautiful, and not focused enough on plot, or the relationships between the characters.  Now, I don't get to the cinema very often at all, so when I do go, I wonder if I get a bit carried away and overawed by the whole spectacle of it.  Going to the cinema is something that I, generally, have to plan well in advance, and is reliant on fitting in with times that my enabler and my car – which also happens to be the 'family' car – are free.  Thus, I look forward to going and, sad but true; I get excited.  So maybe that excitement somewhat overshadows any film that I go to see, and I'm less critical than I should be; less able to see the flaws.

Personally, I believe SWATH was well acted, particularly by Charleze Theron (Ravenna, aka 'The Queen'), who gave an incredibly dark, and powerful performance, but also by Kristin Stewart – who'da thunk it? – as Snow White herself.  You may have noticed the slight surprised tone there; I was pretty sceptical of Stewart playing the lead, as I was really unimpressed with her, frankly, cold and passionless performance in the Twilight films.  Admittedly, I haven't read the books yet – they are on my Kindle – and, according to VW, Stewart plays Bella completely right.  If that's the case, then I will hold my hands up and admit to my epic mistake, but really, I don't see that happening... In SWATH though, Stewart is much better; much more of an actor. Hoorah.  I mean, I still don't think Stewart's a particularly brilliant actor, and she was completely overshadowed by Theron; both in terms of aesthetics and performance; at one point Ravenna is told by 'Mirror' that her powers are failing because one exists that is 'fairer' than she.  Really though?  Has the director not seen Theron?  With his eyes??!  She's stunning and, with the exception of the odd scene where she's 'ug-ed up', she is no less hot as this evil biatch.  Maybe too hot.  But then, this is only in comparison to previous adaptations of this tale, where The Queen was often portrayed as grotesque; becoming monstrous at times, and who's to say that she shouldn't be drop dead?  Course, the mirror coul be alluding to Snow's inner beauty, which would make more sense, and her goodness is indeed referred to in several moments in the film.  Snow White does seem to possess a certain 'magical' quality, and I'm pretty sure she's called a 'healer' by a dwarf at one point, but this is one of the ideas that is not really explained, or developed any further, leading to the viewer – or maybe it's just me – assuming that the mirror is talking about Snow's looks, versus Ravenna's.

Indeed, Ravenna's beauty is cited as one of her 'powers'; specifically over the male species who, apparently, have screwed her over in the past, so why the hell shouldn't she use her body to get her revenge.  Personally, I think this film gives an interesting perspective on femininity, especially when looked at from a post/Third Wave feminist angle, where women are seen to 'do it for themselves'; liberated to achieve power and respect by sheer determination, but equally not afraid or ashamed to use their looks as sites of pleasure and admiration.  SWATH also says some interesting things about aging; as Ravenna is prepared to go to any lengths to maintain her youthful looks, even sucking the life force out of pretty young girls – including, ironically, model Lily Cole – who then become withered up, grey and wrinkly shadows of their former selves.  Is Ravenna a feminist of the first wave; pissed at all the attention and privileges that this new, younger, hotter breed now have, when it was her lot that did all the hard work in the first place?  Quite possibly, thus I think Robinson's notion that Ravenna is a 'generic baddie', who becomes an 'impersonal wall of CGI special effects' is completely unfounded; the woman has depth, demonstrated further by Theron's emotionally unhinged performance.  Impersonal my arse.

Stewart displays a decent range of emotions too and, like I say, while I don't think she's the most talented actor going – by far – I did care what happened to Snow, which is a lot more than can be said about how I felt towards Bella.  I even shed a tear during the poisoned apple scene, and again in the death chamber.  Though, I can't really give Stewart any credit, as she was either dead or dying.  Maybe it was down to Sam Clafin (William) and Chris Hemsworth's ('The Huntsman') performances; both crying over Snow White's cold 'dead' body.  Maybe.  Like I said, SWATH has been criticised for a lack of connection between the characters, and I agree that there is little chemistry between Huntsman and Snow; considering he openly admits to loving her – I failed to spot the development of this 'love'; Huntsman just seems to decide it one day – and nothing whatsoever from William.  So, although I was initially disappointed when the film concluded without Snow ending up with either bloke, it was probably quite right; she could do better, and I would've been more annoyed if Sanders had gone with a 'happily ever after'.  Traditional yes, and more loyal to the tale's origins, but really people, this is the 21st century; no one lives happily ever after.

In terms of the other characters, no one else gave a particularly memorable performance, except Sam Spruell as Finn, Ravenna's pervy brother.  Spruell's character was fairly unnecessary; only functioning as Ravenna's dogsbody, but he didn't really bring much to the film, other than a very bad haircut and a sexually threatening undertone that didn't develop.  Nor did his obviously psychical/physical connection to Ravenna; at one point he is seen to 'die', yet reappears not 10 minutes later, perfectly all right.  Only later, when Finn actually dies, do we see its effect on his sister, who is miles away from him, and who he begs to save him.  Ravenna, selfishly, chooses not to use up the last of her powers to help her bro, yet is visibly gutted that she can't; hence Robinson's 'impersonal' is even more baffling.

The dwarves too, seemed rather pointless, and kinda included for the sake of it.  OK, so their presence would have been missed had they not featured, and I'm sure Sanders would've been slated too but, other than providing some [limited] light-hearted respite, they didn't actually do much.  I expected more, considering they were played by such talents as Bob Hoskins, Nick Frost, Ray Winstone, and Toby Jones, but a lot of the time they were just annoying.  For instance, Bob Hoskin's dwarf is obviously blind in one eye, yet can 'see'; telling everyone that Snow White is 'the one', but nothing is made of this.  Perhaps the director is trying to give the audience some credit; not spelling everything out for them, and letting them come to their own conclusions.  However, the more likely explanation is that SWATH has a lot of ideas – not all of them good – but doesn't develop them into anything meaningful, which is where this film fails.

KT xxx

PhD; Pretty huge Deal

For the past few weeks, I've been desperately – and I mean desperately – researching possible sources of funding for my future PhD, to no avail.  Yup, I've come up with a big fat zilch.  Now, I don't wanna mislead anyone, or put anyone off wanting to study further; I'm just going from my, admittedly limited, research.

There's the Arts and Humanities Research Council (AHRC), and the Economic and Social Research Council (ESRC), which are the big guys in terms of funding.  I was already very aware of the former, as the AHRC offers the University's Humanities department the very generous total of two or three PhD bursaries per year.  Fine.  Great.  It's only just recently hit me though, that there's a very good chance I won't get the AHRC; then what?  I mean, I'm using this year to research my thesis topic, and do all the legwork, before writing a [hopefully] well-planned, and well-constructed proposal, which is what the AHRC money rests on.  But there's the competition; people from across the country will be applying for places too, many of them a lot brighter than me, I'm sure.  So it's definitely not a done deal.

I do have some advantages; I've already been a student at this campus, so know the staff well, and have their support.  HH and The Legend have provided me with loads of guidance in terms of research, and how to organise myself, and have given a very strong impression that they'll help me through the proposal-writing process.  They've been brilliant actually, and have totally made me believe that I can do this thang.  Providing I get funding. 

I'm working in a Film museum, cataloguing the Disney archive.  Considering my thesis topic is going to be set in the world of Disney – more on that in my next post – I couldn't really be in a better place, as I'm surrounded by magazines containing film reviews, interviews with animators, promotional material and so on.  Boss has basically given me free rein, saying that if there is anything I want to look at while I'm there, all I need do is ask.  A vast collection of archived secondary research at my fingertips; check.

I have a year to prepare – well, eight months now – but it's a lot longer, and more relaxed, than coming straight out of a Masters, which is the case for a lot of students.  In a way, I kind of wish I had gone straight on, without taking this year out, just to get it over and done with; I'd be nearly at the end of my first year by now.  Then I remember what a mess I was in the last year, how stressful I found studying the MA and writing a dissertation, without the added pressure of writing a 3000-word proposal.  I did need this break, to clear my head; I know it sounds totally lame, and lazy, but it's been great not having to think about anything remotely academic for a few months.  It's what I needed.  Though, it's amazing how quickly you can forget how to write properly, and this blog, along with proof-reading my niece's undergraduate essays, has really helped to keep my slightly furry brain ticking over.

So, yes, in theory, I'm in a really good position, and am lucky to have a lot of extra support, resources and advice on tap.  I'm just concerned that I'm going through all this effort, doing all this work – not that I've done much yet, but I will – and getting myself worked up – yup, it has begun – only to be disappointed next year if I don't get funding.  I'm not one of these overly optimistic types that gets their hopes up, only to be constantly disappointed; I'm a spoonie after all, I'm used to being let down. 

I do really wanna do this, and sooner is obviously much better than later; if I get on the course next year, I won't graduate till I'm 30, and that's if I go full-time.  Both HH and The Legend have, quite strongly, suggested I go part time, at least to start with, as I guess they can [vividly] remember what a nightmare I was last year.  They're probably right, and I can't describe how amazing it feels to hear how much they care, but that means I won't graduate until I'm at least 33… Looking at it written down like that, it doesn't seem like much difference, but it is really and, apart from anything else, my parents – both in their 70s – aren't getting any younger, and three years might make quite a big difference to them.  I want them to see me graduate, after all.

On the other hand, I'm doing a PhD for me, not for anyone else, thus I should only be running to my timeline of needs.  Even then, getting it finished in three years has its advantages too; I'll be much more employable by the age of 30, and might end up with a career lecturing or researching for the next 20 or 30 years. 

I'm less likely to be affected by a change in support staff, whether that be supervisors, note-takers, or personal carers at home, in three years than I am in six.  Course, people may leave due to illness, babies, new jobs etc during my three years of studying, but it's likely I'll experience less upheaval in a shorter space of time, which is something I need to think about.   I do get too attached to people, I know that, and I gotta stop doing it.  The Wife's called me on it before, and she is right; she's always right but, in my defence, when you need to trust someone to look after your most basic needs, and have to share your [sometimes quite personal] history with that person, you can't help but become attached.  Well, I can't, and I've really gotta stop it.  It's not really just the attachment issue, though that's a big part of it, it's having to explain my needs to someone new, over and over again.  To be honest, I'm getting used to it, now I have carers in at home, so maybe this isn't such a big deal.  I would be disappointed though if, for instance, I got halfway through a PhD and my supervisor – most likely to be HH or The Legend, due to my topic – left, because they know me and my 'issues', I trust them, and I can talk to them.

Anyway, the whole part-time/full-time debate is something that's going to be ongoing for a while, and may not be resolved till I start the course, if then.  That is the least of my worries, really – so why the hell am I fretting about it now??! – and my main problem is funding.

As I said, there's the AHRC, which covers PhDs and research projects in humanities, which Film falls into.  The ESRC covers economic, business and social projects, so I wouldn't qualify for one of their grants, but a lot of their areas of research coincide with those of the AHRC, thus it's good to at least be aware of them.  Failing these guys, there really is very little else in terms of funding opportunities for PhD, and nothing out there specifically for spoonies wanting to go down this path.  I'm sure there are thousands of institutions and organisations that would offer bursaries for particular research projects, but these are usually offered to one person at a time and, in my experience, are largely in the fields of medicine, science, business and sociology. 

I have looked up so many charities over the past two years – I tried to get funding for my MA – that I've lost count of how many 'no's' I've received.  I'm not saying that because I'm disabled I should automatically get funding, but it all just seems to stop at PhD level, for everyone, not just spoonies.  The Prince's Trust, for example, which is all for helping young people get into education, won't fund university course fees, at any level, which, to me, seems a tad fucked.  I even wrote to Disney, to ask whether they had any funding schemes or initiatives, only to be directed to a page on their site that stated that they are not "able to support personal appeals on behalf of individual people, including scholarships, challenges or overseas volunteering".  So that was that.

I know that no charity is going to give me the whole £14.400 – it's gone up, great – to cover the course fees, but no one seems to be interested in offering me anything, which is pretty depressing really.  I mean, as a spoonie, I have no delusions of grandeur, and completely understand that I'm much less employable than an able-bodied person, and undoubtedly more expensive, due to sick pay, extra equipment, and the need for a personal assistant.  I also know that I could probably only work part-time, and may find it difficult to travel on occasions, because of ill-health, or issues with care.  I get all that.  But what I don't understand is that I, along with many other spoonies out there, am trying to make myself more employable, and more valuable "to society", by furthering my education to this level, while in turn researching something that may prove useful to others, yet there doesn't seem to be any financial support or imperative to do so.  Considering one of the main issues at the moment is unemployability, you'd think the government, or someone, would say:

'Hey, well done for wanting to achieve and better yourself, when life is pretty tough for you, and ultimately give back to a society that hasn't done a whole lot for you, here's £500'

Is it me?  Am I wrong; is there anything out there that I don't know about?  If so, please, please let me know, because anything would be a bonus.

KT xxx

Identity Crisis

Having a bit of a crisis of conscience at the moment, after some really weird - and pretty darn creepy - comments.  Basically, I've been thinking about how a lot of people use the Internet to hide behind, like these so called 'trolls' that abuse others on twitter, because they feel they have the right to say anything, and it won't get traced back to them.  The whole point of my blog was to be as honest with my readers as possible, yet, I don't use my real name… And therein lies the problem.

When I first started writing, I figured it would be much easier to be myself if I wasn't myself; i.e. I used a false name. That way, I felt I could be honest about my life, without worrying about having any fallback, or offending anyone I know – not that I would deliberately. It's like, when you have counselling; it's much easier to talk to someone who's not part of your life, who won't judge you, because they don't know you. That's what this blog is to me, kinda like my therapy. I've already explained at great length why I chose the pseudonym of 'Bad Wolf', and I still stand by what I said back then. I like the anonymity, and I like being able to keep this identity separate from the persona I portray in the real world. Otherwise, I am 100% honest in what I write here, and my twitter account – also under 'The Bad Wolf' - is an extension of that.

Yesterday, I got it into my head to screw what anyone else thinks of me, and connect all my accounts. So I went about connecting my twitter back to my Facebook, and allowing NetworkedBlogs to post on my Wall/Timeline. But then I thought about it a bit more, and talked to The Wife, and today I've gone back and reversed all those decisions; except one, which I'll reveal in a minute. Maybe I'm a coward, and shouldn't be bothered about what anyone thinks of what I write, but I am – bothered, I mean. It's like I said in 'I'm Fine'; there are certain people I can be honest with, and tell how I'm really feeling, but for the other 99%, I give the default 'I'm fine', and it's those that I don't feel comfortable in letting read my blog. Stupid, right? My blog is public, for the whole world to read, yet I don't want [certain] people I know reading it. I think, if I always had that worry at the back of my mind, that friends and family may be reading this, then it would hinder my honesty, and ruin the whole point.

It also helps that, after a lot of thought, I've kind of pinned down what I want out of this blog, which maybe I hadn't really thought about before. I want it to be a platform for me to express how I'm feeling, how I'm coping with my day-to-day life as a spoonie, and any worries or changes that may occur, and I hope that, in turn, I'm providing a bit of support or insight to those of you reading this. I find it really difficult to talk to people, apart from a select handful, so this blog has proved useful to me, on a selfish level, for understanding myself, and working a few things out. I welcome comments, and criticism, and would love to hear from other spoonies, or friends/family of spoonies, just to know someone is on the same wavelength would be brilliant. On that note, in future posts I'm going to try even harder to talk about my life as a spoonie, and how my condition - Brittle Bone Disease - affects me, in the hope that anyone else with a similar condition, or spoonies in general, will at least feel that they're not alone. I'm also going to make sure to write more about film too; it's not all about me, and I need to make the effort to write something a bit academic, after four years of studying the subject.

But, while I want to remain anonymous, I feel that I should give you all a bit of myself, a smidgen of my true identity, in order to keep that balance between the completely honest 'Bad Wolf,' yet be an identifiable and empathetic personality. So, from now on, call me Katie.

KT xxx

Trapped

Bank holidays suck, don't they? I find them so boring, and there's never anything to watch on TV either. It wasn't helped this weekend just gone that mother went out for the day on both Saturday and Monday, leaving me [with father] to amuse myself. Not easy.

I don't begrudge her going out at all; she definitely needs some space away from me, and vice versa. But I do find it difficult when I'm effectively confined to my room for practically a whole weekend. As mother is still my main carer, and the only one able to move me, if she goes out first thing in the morning I have to stay in bed till she comes back; otherwise if I got into my chair I'd be there for hours, which I couldn't do. In an ideal world, I'd have a hoist set up, so that other carers could come in and help me out but this is yet to be the case.

I know I shouldn't complain cos, compared to some, I have it relatively easy. I mean, I'm not in constant pain, I have the support of my parents, particularly my mother, who does everything for me, including driving around the countryside, and I have a lot of friends. Maybe I'm just a bit narky because I couldn't do what I wanted to do at al this weekend; it wasn't about me. Not that I had any plans, but the fact I couldn't make any even if I wanted to was quite a depressing (?) thought. I think it's just times like this remind me how limited I am, and how dependent I am on other people. I can't go anywhere without okay-ing it with my mother, who I might be relying on to drive me, or SB, my enabler, who may well have plans of her own. Even if I can go out with SB, I can only do that at a time that's convenient with my parents, as we only have one car. My car.

I guess I feel trapped by my disability; not a new sensation, but one that I try to forget about, and get over as much as I can. I've talked about freedom on here before, or lack of it, and it really is, for me anyway, the worst thing about being a spoonie. I don't really mind being disabled from any other perspective, it's never bothered me that I can't walk, ride a bike etc etc, though I'd much rather not have Brittle Bone Disease. But it is not really stop me doing anything major, like getting an education, having good friends and so on. I suppose maybe I'm being a bit glass half full, as I know I'm going to find it difficult to find a job, and the whole relationship thing is a total nonstarter.  What I'm trying to say is, I never, ever, think 'I wish I wasn't disabled'. Ever. Maybe when I was younger; as a child watching everyone running around in the park, or fixing up sleepovers, yeah, but not now. Suppose eventually you get used to not having certain things, not being able to do certain activities, and there's no point missing something you've never had. Right?

No, the only thing that bothers me about being a spoonie is not having that freedom to say.' I'm going out, not sure when I'll be back'. Such a simple statement for the majority of non-spoonies, one that most people don't even think about. I do. A lot. I can never make plans on the spur of the moment; ring a friend in the evening and arrange to meet the following day for a shopping trip, pop out to the town, go for a walk on my own around the park. Dead simple things like that are what makes it difficult to be a spoonie, and when I’m left 'on my own’ it serves as a reminder - like I need it - of what I can't do. As I said, and as is obvious, there are many things I can't do, but I don't dwell on these, and I don't [think] I feel sorry for myself either. Similarly, nothing's gonna change either; it's impossible. Even when I have 24-hour care from people I pay, and have a car to myself, I'm still never gonna be able to do my own thing, or go out without making really tight, military plans.

Am I OK with that? No, not really, but there's nothing I can do about it, so stop moaning. I've just gotta focus on the things I can do and, for one thing, I thank my lucky stars every day that I'm at least of 'sound' mind… Well, kind of. I really don't know what I'd do if I couldn't hold a conversation, couldn't read or study. Then maybe I'd have something to moan about, which I didn't intend to do today. Obviously I don't have enough on my mind at the moment; need to start researching that PhD. I shall endeavour to not complain at all in my next post.

BW xxx

Source Unknown

I feel really sick.  Sorry, that's not the topic of today; I don't know what the topic of today actually is, but it's not that.  I just thought I'd state a [pretty boring and pointless, yet honest] fact, particularly if this post ends being short because of it.  Although, this post may well be very succinct anyway, on account of the fact I don't feel I have anything much to say… Figured I should write something, as it's been ages, and I don't want to get lazy, but then I don't believe in blogging for the sake of it either.  So I'll try to make this slightly interesting, for all our sakes.

I haven't achieved very much since my last post; I've spent most of my free time proof-reading my niece's BA dissertation, which has taken a fair few hours, though it was only 10,000 words.  Other than T, no one has ever asked me to proof read an essay before, and it's really hard.  I mean, I was taught the 'rules' of 'good' essay writing, as I'm sure a lot of people are, but it doesn't mean that these rules tally, or apply to all forms of academic writing.  Like, when I was at secondary school, the same one that T attended, I was never told not to write in the first person; arguably the most basic rule going, right?  I was sent off to Uni, to do a course on Journalism, ffs, with no idea how to write a decent essay. Yet, once I went into FE, after The Event, such rules were drummed into us, thank god and, I think [hope], my writing dramatically improved.  Course, just being at Uni, and having to write endless essays really does wonders for your skills, but I find it really interesting to see how differently students are taught the basics, if at all.  I mean, I was taught referencing until I could repeat the lessons in my sleep, yet the majority of my fellow university students had no idea what to do, which I believe is still the case for many new undergrads. 

I'm not saying I'm brilliantly clever, cos I'm definitely not, or that I've had the best education going, or that my way of writing is the right way, as I believe no matter how good you think you are, you can still learn from others, and improve yourself.  I'm just saying that there doesn't seem to be one umbrella system of rules for good academic writing, and it's really difficult when you move from one institution to another, or compare work from a variety of sources, to really know where you stand.  I hope the advice I gave T was helpful and, most importantly, correct, as I know how emotionally attached you can become to longer pieces of writing, and thus how difficult it can be to let others read, and potentially criticise, the work that you've put your heart and soul into.  It is a big responsibility to proof read for somebody; I don't think I really appreciated that until now, better go and thank Gloria again then!  My input was gratefully received by T though, and she did all the hard work, I merely edited, and added a few comments here and there. 

It was quite a privilege actually, that she trusted my judgement enough to let me help, but now I'm done – she's handing in today – I really should knuckle down and do some proper work for myself.  I'm supposed to be researching for my PhD, and really trying to pin down my corpus – what the hell I'm writing about – before putting together a proposal.  If I don't get the proposal bang on, then I won't stand any chance of getting a scholarship, and consequently won't be doing a PhD any time soon, so no pressure, and no half-hearted attempts.  I have to focus, grrrr – that's me being determined and driven, by the way.

Other than proof-reading, I haven't done a lot.  I've been out a bit with SB, my enabler, though that hasn't been completely smooth, as she cancelled on me last week, due to a bad back.  I don't begrudge anyone time off because of illness, and everyone deserves a holiday too, naturally, but SB has cancelled on me a fair few times since becoming my enabler, and it is more than a little concerning.  Before VW left, she promised to show SB the ropes, and give her a few practice runs on how to get me in and out the car safely and securely, yet SB postponed this arrangement a good four or five times before we got together.  It was in the back of my mind then, whether SB was taking this new role seriously as, although she's a carer anyway, maybe this job wouldn't be as important as her 'main' career.  I let it pass as, admittedly, I was desperate to make sure I wasn't left without an enabler, and the fact that I'd been 'allowed' two more hours a week, plus the increased flexibility meant that this was really too good an opportunity to miss.  Besides, when SB did begin her 'training' she was very competent and confident, and I already knew and got on well with her, so it made sense to carry on, rather than beginning the seemingly endless task of tracking down somebody else, who probably wouldn't be as flexible – because they wouldn't live right round the corner, or be free from 11 every weekday morning etc.  It seemed ideal to hire SB and, without sounding totally hard done by, it's not often that things seem to just work out like that for me; they generally take months, maybe even years of planning, and it's a stressful, exhausting nightmare.  So when things look doable, I try and go for them then and there, before the offer ends, so to speak.

It has worked out well, to some extent.  When we have been out, it's been really relaxed; we've organised everything between ourselves, and have had no real worries about when I must get home again; long as it fits in with SB's life, of course.  But, like I say, she has cancelled on me, a fair few times, if you include the initial false starts I mentioned earlier.  It does annoy me, though the times that she has let me down have never been that critical, as I've not had any real plans.  I'm waiting for that one.  I just assumed she was reliable – is anyone though, really? – and would take this job as seriously as her role as a carer.  Maybe she does really value this job, and I've asked her if she's still up for it, which she says she is, so perhaps it's just teething problems, or genuinely bad luck. 

I am gonna give her the benefit of the doubt, and see what happens; if she lets me down again, particularly if I've made important plans, then I'll definitely have to think differently.  The Wife'll probably kill me, because she told me to complain about SB's absences, but I really don't wanna lose this service.  It is just a service; I'm not attached to SB, like I was VW, so it's not the fact of losing her as a person that's the problem.  It's the fact that my family and I receive very little support as it is, which is entirely our own fault because we've always 'managed' on our own, without asking for help until recently.  Now, while I have a small amount of home care, almost as a supplement to mother – I'd genuinely accept more help, but my mother feels that, while she's here, and relatively able she should do the majority – I still have to kick and scream to get anything else.  My OT is worse than useless, and I've been waiting nearly three years for her to set me up with a hoist so that my carers are able to move me without my mother's assistance, only then can I really begin to think about 24 hour care.  It isn't fair that it should be this damn hard, and I'm getting upset now, so should probably take that as my cue to go, cos I refuse to feel sorry for myself.  That won't get me anywhere, whereas complaining and screaming blue murder might, so I'm going try the latter tactic, methinks.  Though, why should I have to??  Argh, going.

BW xxx

Round-Up

Crazy, mad-busy week this week, so today's post is a summary of all that's happened; dead exciting stuff too, you'll be hooked.

Monday

Did bugger all.  I figured I needed to conserve my spoons for the week ahead, that, and I popped a rib sneezing, which didn't rate too high on the pain scale, but I spent the day in bed anyway.

Tuesday

Worked at the museum, as per, but stayed on an extra hour as I knew I'd be meeting The Legend for a PhD-related chat, and I'd missed a couple days' work last month due to illness/malfunctioning chair, so didn't wanna take the piss.  Not that I get paid, but I'm nice like that I guess.  Felt that extra hour too, but hardly slept that night cos my rib was killing me – The Wife will tell me off after reading this; she told me not to go in if I was hurting.  I wasn't till I got home, honest! 

It was worth it though, seeing The Legend, as I knew it would be.  She loved my proposed PhD topic – well, she would; it was her comments on my MA dissertation that 'inspired' me!  Not gonna go into too much detail about my subject yet, in case somebody happens to nick it before I get there.  It's hardly finalised either, and needs a lot of polishing.  Let's just say, that I'm thinking older women in Disney films, which is pretty much as fair as I've got, too be honest!

Yeah, so The Legend approved – always a bonus – and gave me some research tips, which I'm gonna make every effort to follow up; if I do this, I'm doing it properly.  She has actually got me quite excited and determined about it; I knew if anyone would, it'd be her.  On the other hand, I'd already made up my mind that, if I'd come away from that meeting still feeling terrified – not that I'm not a bit terrified – and unsure, then I wasn't ready for a PhD yet.  Guess maybe I am, I think.  Like I say, it still scares me to death, and I said as much to The Legend, who replied with 'it is hard' – duhhh – but she thought I could do it.  She also said 'we' a lot, like 'we'll plan a proposal' – in the summer, when I'm to go back and see her – or 'we'll have great fun researching this'.  I thought this was sweet, and hope I'm not deluding myself by thinking that The Legend is really gonna see me through, and be dead supportive.  Not that I ever doubted that, but it was lovely to hear – assuming I'm right – and has made me look forward to this next, mahoosive, step.  I'd probably end up with The Legend, or HH, or both, as my supervisor(s), cos of my topic, so I know I'd be well looked after, and should get a lot out of the experience.  There's the prospect of me teaching while studying too, starting by shadowing a lecturer, then gradually doing a bit myself.  Love the idea of this; how it'll work in practise I'm not sure, depending on the practicalities, and whether students will even take to me – quite a major concern for some spoonies, I imagine.  Still, it's a challenge, and I'm not one to be overly concerned about what other people think, so bring it on.  In 19 months.  I'm not that ready.

Another thing that warmed me to The Legend was that she asked not only how I was, but how things were going at home with carers, and the hoisting/lifting saga – which I know I haven't discussed in great detail here. I will, but it'll be a ranty one, and I need to build up to it.  Anyway, aside from The Wife, Gloria and VW, none of my friends ever ask me about this stuff; how I'm really getting on, and it makes me love the people that do even more, cos they care, else they wouldn't ask.  Course, as I'm not half as close to The Legend as the above three, I gave her a slightly watered down version of events; a bit 'I'm fine' but with greater honesty, and she was very understanding, and annoyed for me – again, I will explain at a later date.

All in all, Tuesday was good, but I used a lot of spoons.

Oh, I met one of the main 'donors' to the museum too.  He was the 'partner' – in quotes as I'm not sure what kind of partner, and don't like to ask – of the [now deceased] founder, and still sends a loada film-related stuff through from time to time.  Very sweet chap, thanking me for all my 'hard work', bless.

Wednesday

Went with new enabler – referred to as SB from this point on, reckon she's passed the trial period – to see War Horse at the cinema.  Awesome, tragic film, though I didn't cry, surprisingly, thought I'd be a wreck.  I think, probably, had I been at home, in the comfort of my bed, I would've bawled.  Gok Wan had me going a couple weeks ago; I will cry at anything, but don't cry in public.  It's not that I won't, cos I was quite prepared to on Wednesday, and wouldn't have minded a good ol' cathartic weep, but I just don't.  Much. 

I'm really hoping to be able to go to the cinema way more often, now I've got SB; I went once in 2011, and I am a Film grad.  Sorry, Post-grad *grins*.  Apart from anything else, it's great to do something normal – for non-spoonies – that I don't often get the opportunity to do.  Mother moaned at me for making SB drive me to Tesco first, to get supplies – yup, I smuggled in; so sue me – cos of the effort of getting me in and out the car.  SB was ok about it, I'd checked with her numerous times while we were making the arrangements, and we've got it down to a fine art now, pretty swiftly too.  No problems.  To be honest, and I've noticed this when I've gone out with VW, mother seems to get dead touchy – shitty – with me before I go out.  It's probably just a slightly heightened way of nagging me; maybe she's nervous about me going out without her.  I can't help thinking though, and this is gonna sound awful, but maybe she's jealous that I'm choosing to do these fun, normal things with someone else… I expect I'm totally wrong, and I'm sure she understands that I need people like VW and SB to keep me bloody sane!  Almost sane.

I'd had to get up early – earlier than normal – as mum went to my sisters', and going out used a lot of spoons, as I was sitting for a good six hours – following Tuesday's longer stint, and little sleep, so I was pretty knackered Wednesday night.

Thursday

Had my haircut, no biggie… Yeah, actually I hate getting my hair cut, and I always felt like a bit of a twat, as I know a lot of people find it very relaxing and enjoyable.  However, after reading Christin Miserandino's Spoon Theory, I can imagine this task could be difficult for other spoonies, and had a tweet from someone this week to confirm this. 

Following my spinal fusion op at the age of six, I can't sit upright unaided, or hold my own head up.  So, when it comes to the hairdessers', I need someone – mother – to do it for me.  Leaning forward, even for a matter of a few minutes, kills my back and neck; probably cos the muscles don't get used much.  It takes less than 20 minutes to have my hair cut, but I'm left aching and exhausted afterwards and, coupled with Tuesday and Wednesday's exploits, I was running very low on spoons by this point.

Friday

Another early start, so no chance of earning a few spoons back with a lie in.  I did spend most of the day horizontal; either in bed, or on my sister's settee when I was there in the afternoon, but I was already so tired that any effort was spoon-consuming. 

Saturday

Today.  Currently lying in bed while dictating/typing this, so conserving some spoons, though I did go out briefly with the parentals this morning.  I'm likely gonna be able to spend the next couple days resting up, which ordinarily would fill me with dread of the threat of boredom, but I think I'm going to need that time, cos I am tired.  I must be getting old, as I obviously somehow managed a five-day week at college, back in the day.  I dunno, maybe now that I understand the Spoon Theory, I'm aware of how I feel? 

It doesn't help that I woke myself up unnecessarily early [again] this morning, after a really emotional dream about Gloria; mother had upset her somehow, and she wrote me a letter saying basically, as much as she loved me, she couldn't work with me anymore.  It's all a bit blurry, though I do remember crying a lot, but that was the gist.  It still gets me a bit now actually, thinking about it, and I'm just going to ring Gloria for a chat; though I won't be telling her about the dream.  She'll think I'm bonkers, which I probably am, though I think it smacks of needy if I'm honest.  I'd die if I lost Gloria's friendship over a row, not to mention VW or, god forbid, The Wife.  I think it says a lot that I was more upset about this dream than I was over losing K's 'friendship' last week.  But I digress, going now!

BW xxx

Make Friends, Make Friends, Never Never Break Friends...

… Unless you're a spoonie, that is.

I've been reminded this week how difficult it can be for us spoonies to maintain friendships, particularly with non-spoonies.  It's no coincidence that my closest friend happens to be a spoonie too; though that's not why I love her, as disability/illness doesn't define you as a person.  No, I love The Wife cos, among many reasons, she understands my limitations and difficulties, mainly because she shares a lot of them.  She would understand that, for example, while going to Tesco with my new enabler may not be mind-blowingly exciting, it's a big deal for me, a) because of the whole trusting someone else to look after me thing, and b) because it's me going out by 'myself'.  A non-spoonie friend, might give me an 'Ohhh, that's nice', and may even feel a bit sorry for me that such events are often the highlight of my week. 

No disrespect to my non-spoonie friends at all, and I know I'm really lucky to have the amount of friends I do, some of them being pretty close.  However, because I'm a spoonie, and have to rely on other people to take me out, physically seeing my friends can be a real nightmare to organise and if they live more than around an hour away, the likelihood is that I will never get to catch up with them.  Thus, I do a lot of my friendship maintenance via Facebook, and by text and e-mail, which I know is not the same, but it's often the best I can do.  When I do get to see friends – my 25^th last August was the most recent 'reunion' – it's all the more meaningful though, consequently, I'm usually pretty bummed out when I get back home, knowing that it'll probably be another year till I see them again.  Fortunately I do have some local friends, but meeting them is a challenge too, as they work/study/have children, and their free time is often no good for me.  Most of my friends at least understand that it's difficult for me to get to them, and are very accommodating, either coming to meet me, or simply by being patient; letting me make the arrangements of where and when.  Course, then I feel guilty that I'm putting people out, taking up their time when they could be doing something else.  But spoonies have to learn to live with that guilt – the 'I'm such a burden' phenomena – and get over it, otherwise we'd never get anywhere in life.  I think I'm a good judge of character too, and seem to have chosen some very patient, reliable, understanding and brilliant friends… Or so I thought.

The reminder that I mentioned above came via 'friend' of almost 15 years, K, after a total misunderstanding; Facebook doesn't always help to maintain friendships.  It's a long story, and I'm not gonna use this blog to vent but, in summary, I was basically told that I'm a crap friend, who doesn't communicate, doesn't listen and, most interestingly, doesn't know what loneliness is.  Ha, where do I start?  I do feel guilty – there's that word again – that the best I can offer my friends is what amounts to a virtual, or 'cyber' relationship and, for some, that's evidently not enough.  Moreover, I know that dipping in and out of friends' Wall posts is hardly conducive to a close friendship, thus I miss out on a lot of what's going on in their lives, but I was so angry – not venting, so not venting – that she called me on this.  I do my best, and after 15 years, you'd think K would know that. 

The loneliness thing really got to me, and was thrown back at me after I – I'm ashamed to say – used the 'disability card', with 'try being disabled'.  I hate using my disability to get a point across, or get things done though, as Gloria says, sometimes you just have to.  I didn't use it in this scenario to get sympathy, but I was so annoyed at K banging on about how stressed she was, how ill she'd been, how she couldn't afford to go anywhere, that I snapped.  I'm not saying that people around me can't ever say they're unwell, or unhappy, but when 90% of their life is spent being 'normal' and healthy, it annoys me a tadge when certain people make such a fuss about being ill for a bit.  God, I wish my reasoning for not being able to go out was down to money – not that I'm well-off, but you get my gist. 

Loneliness is a very subjective thing, I get that.  The loneliest of people might have dozens of friends, but maybe can't connect to them, for whatever reason.  While some people just have one or two really close friends, yet feel completely happy, and loved.  I'm – awkwardly – somewhere in the middle.  I've got lots of friends, but I can only properly talk to less than a handful of them and, while this select few stop me feeling totally isolated, I still get lonely in the sense that I miss out on the day-to-day minutiae of friendship. 

OK, so maybe I have vented a bit today; apologies!  Not really sure of the moral of this tale, maybe don't have an argument over Facebook?  Seriously though, to all the non-spoonies out there, absolutely feel free to indulge in a bit of self-pity when things aren't going well, but just remember your audience, cos for the majority of spoonies, life is like a permanent bad day.  To all the spoonies reading this, just do your best, and if friends aren't being supportive or patient, then they probably don't deserve the title of 'friend'.  That, and if it makes you feel any better, at least we've got each other; spoonies united… God help the universe.

BW xxx

Short and Mad

I was intending to write about something else, way more specific, this week, but I can't seem to settle my mind on anything at the moment.  Hence, this rather short post, full of mad ramblings.

VW had her baby on Friday night; I found out yesterday evening.  I wasn't half as emotional as I thought I'd be, even when I spoke to her, but I am more excited, and proud, than I've ever been for a friend before*.  Probably because I've never been there during any other friends' pregnancies; watching it all develop, and talking about the gory details.  I've actually felt part of this; in a totally healthy, knowing-where-the-boundaries-are, kinda way, and hope that I can watch little Charlie boy grow up; which again, I've missed out on with friends.  I'm not as broody as I thought I'd be either, hurrah!  I think I've got over all that and, while I still think having a baby must be incredible, I'm not as hung up about me having a baby.  Aside from @sarahwithstars, who knows how much she means to me, VW has become one of my closest friends, and I guess it could seem that I'm living the baby thing vicariously though her.  Maybe I am.  I think I've come to realise, with a little help, that there are other things in life, besides s.e.x., and children and, as a spoonie, I've got to focus on the things I can do, rather than those I can't/might not.  Also, I think mother might have twigged how I've been feeling, though I thought I'd hidden it pretty well, cos yesterday she was talking about the practicalities of how I could hold Charlie.  I dunno, it's just the way she said it, like she felt a bit sorry for me, and that at least VW might let me 'borrow' her baby for a bit.  Borrowing is fine by me now though, I need my sleep!

Dad had the 'your mother and I aren't going to be around forever' talk to me yesterday, in regards to what I was doing about a PhD.  Dad isn't one for serious convos; in fact, he isn't one for any type of convo, due to a brain injury he suffered years ago, followed by hydrocephalus, which totally affected his social interaction skills.  So when he does try to talk to me seriously, I do make the effort to properly listen, even when I don't agree.  He said he wanted to see me doing something I enjoyed, and that I'm interested in, beyond the four walls of our, rather bijoux, bungalow, and that a PhD would mean me getting a job in a place I'm already happy and confident in., i.e. the University. 

Now, I dunno whether my parents are a bit naïve, or just very optimistic, cos obviously a PhD does not guarantee a job.  It's definitely a step towards becoming a lecturer, which I'd love to do, or a researcher, which I could do – though this strikes me as a pretty lonely career; surely one of the main aspects of spoonies achieving employment is the social side? – But it's not a guarantee.  Yes, a PhD would give me something to do for the next three years, and would hopefully lead on to something, but I can't justify putting myself through all that as a cure for boredom, and if nothing came of it in the end, I'd be gutted.  That realisation has just hit me as I typed it; not that I might not get anything after a PhD – I'm not stupid, I know the score – but how I'd feel about that.  Not great, judging by how I'm feeling right now, simply imagining it! 

On the other hand, I've always quite liked the idea of teaching – I am from a family of teachers, though I'm adopted… Nurture 1: Nature 0 – and I think I'd be best suited at the further education level; where students are a bit more… accepting.  Teaching is one of the few careers that I can see really fitting around my disability, though I would still need some support.  So why the hell don't I just get on with it?!  I'm nearly 26, and I've never had a 'proper' job.  I could totally do this.  I think… I even wrote down a title that I'd quite like to use yesterday, with three bullet points, and it wasn't all that scary!  Other people believe that I can do it too, which is very flattering, but a lot of added pressure not to fail, and are waiting for me to come knock on their doors for a chat.  Maybe I will; have that chat I mean!  It can't hurt to talk this all through to someone who can tell me all the gory details.  Talking to Bill was really helpful the other week, and I thought that I'd be even more honest with HH – my amazing MA supervisor – or The Legend, who were both aware how tough I found things last year.  I might just do that; even to just put all these crazy, mixed up thoughts, into some kind of order.

BW xxx

* I mean proud in relation to a friend reproducing here.  This is not the most proud I've ever been of a friend; that accolade goes to The Wife, particularly referring to the well-deserved news she gave me last night but, in general, that girl just makes me bloody proud!  Thank god I've had her to discuss all the above with too, cos trust me, my blog posts would be even more garbled without her.

I'm 'Fine'

I really wasn't sure what to write about for this week's post; bit of writer's block.  So I must credit The Wife for today's topic, cheers love!

When someone asks you how you are, what's your natural response?  'I'm fine thanks' usually suffices, right?  Well yeah, of course, cos it's easier to answer with those two words, rather than giving an honest answer – unless you really are fine, in which case 'I'm fine' is, er, fine.  But if you're a spoonie, then nine times out of 10 you're not 'fine'.  I've just this minute Googled 'I'm fine', and the top result was this poem, which, although written by someone a lot older than myself, pretty much hits the nail bang on the head, particularly the last stanza.

You're probably wondering why spoonies are such a dishonest breed.  Let me give you an alternative response to 'I'm fine', then it might make more sense.  Hypothetically, on a bad day, if someone was to ask me how I was, I could respond with the following:

'I'm exhausted; I took ages to get to sleep last night, caused by pain, or anxiety about pain/care/new equipment/a long car journey etc.  I ache all over because I've been sitting in the same position for God knows how many hours, and I've still got X amount of hours left to get through.  I'm absolutely boiling hot, cos I can't seem to regulate my own temperature, and feel constantly overheated, even when it's -5 outside.  My hair needs a wash, but last night was a non-carer night, and my mother wasn't in the mood/didn't have the energy/was out.  I'm sick of this 'will it/won't it snow?' business because, as a spoonie, snow automatically means not going out for several days – weeks, in the case of 2011 – for fear of getting stuck somewhere, and not being able to just call the AA, as I travel in my non-collapsible, dead fragile, wheelchair.  For other spoonies, there's the risk of falling, and causing more damage to yourself.  I've had/got a busy week this week, and I'm worried I'm not going to have enough spoons to get me through/over it.  I'm really spotty, cos of my raging hormones, but I don't have the time or energy in the morning to put any make-up on, and I certainly don't have the time or energy to use a cleanser – neither does my mother – and that's even if I could get myself close enough to a sink, which I can't.'

Bet you're really glad you asked now, huh?  Although the above is a very worst-case scenario, hypothetical kind of response, it is definitely the type of answer that I could give, easily.  In fact, some bits of it were true, but I'm not telling you which bits, cos us spoonies tend to shy away from the 'poor me' routine.  Without generalising, I think everyone does, to a certain extent; it's that British 'stiff-upper lip' thingy isn't it?  No doubt the same could be true for other nationalities, lemme know, I'd be interested to hear the common response to 'how are you?' in Outer Mongolia, for example.

I can only speak for myself, influenced by my spoonie-ness, and say that I use 'I'm fine' for three reasons.  Firstly, I really can't be arsed to tell certain people the truth, particularly if it's someone that doesn't know me very well, or I don't trust them enough to be that honest, as I'd have to give a very thorough explanation for them to even begin to understand.  Whereas, if I was talking to someone who knew me well, and I trusted, I could give them the bare necessities, and they'd get it.  Being honest takes up too much energy, uses too many spoons, for me to waste it on explaining myself to someone who I may never see again, or who probably isn't really that bothered, and would rather I had just stuck with 'I'm fine'.

Secondly, there's the guilt aspect; spoonies are constantly thinking about those around them, and how their disability/illness is affecting them.  Well I am, and I know for a fact this is how The Wife thinks.  So by telling somebody the truth, I would automatically feel guilty that I'd made them feel bad or, even worse, I'd made them feel sorry for me, which is something no spoonie wants to do.  Aside from 'poor you', another response from a non-spoonie may be 'Is there anything I can do?', which of course there isn't, hence more feelings of guilt on the spoonie's part, and helplessness – maybe even pity, yeuch – from the non-spoonie.

Thirdly, as I said before, I personally am not very good at discussing my feelings, so I have to be really close to people, and have built up a lot of trust before I can properly spill.  Saying that, I've got a lot better over the past year, probably as a result of the counselling I had, and the confidence that Gloria and VW instilled in me, that it really is ok to not be ok, and to say when that is the case.  I'm still pretty picky over who I share everything with, and 'I'm fine' is still my default response to the majority of my friends, but there are the odd exceptions, and I know exactly who I can say 'I'm crap' to.  I'm so lucky to have another spoonie in my life, in the form of The Wife as, although we don't the same conditions – though, not that far off either – we totally get each other, and we can be honest.  There's no point feeling guilty, cos we're both going through similar crap, and sharing our crap makes it that teensy bit more bearable.

So, if you are a non-spoonie, and you ask a spoonie how they are, don't be at all surprised, or offended, to receive the 'I'm fine' response.  It doesn't necessarily mean that person doesn't trust you; it might be that they're trying to spare your feelings, or conserve their energy.  If, however, you get an honest response, try not to freak out, or run a mile; that spoonie obviously trusts you a lot, and thinks enough of you to feel that they can share stuff without losing you, so be there for them.  Give them a hug, if they can physically manage one – I can't; yet another thing someone can't do for me – or simply listen.  It does help.

BW, with a little – ok, a lot – of help from The Wife xxx