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