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

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

The Spoon Theory

Before I start, I must must must point out that Spoon Theory is not of my design.  I wish it was, cos it's amazing, but it was written by Christine Miserandino as a way of explaining what life is like for a person with disabilities or illness.  Not an easy feat, but she does it brilliantly; reading her article made me very emotional, cos it was just so bang on.  The following post is merely my take on Spoon Theory; summarising it in my own words, and showing you why it gets to me in the way that it does.  I strongly suggest you read the original article by Miserandino first, as what I write will never come close to its sheer brilliance:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

As I said, Miserandino created Spoon Theory as a means of explaining a life with a disability or illness, in her case it's Lupus.  I totally understand how impossible – until Spoon Theory came along – it is to put into words how your life is affected on a day-to-day basis and, whenever friends ask, I usually just say that I'm used to it, and don't know anything different.  While this is true, I realise that it doesn't really answer the question of what it feels like to be disabled, which is the very question that sparked Miserando's original theory.

Without completely rewriting Spoon Theory, which is not the aim of this post, I'll summarise by saying that to answer her friend's question, Miserandino grabbed a number of spoons to visually represent the choices that a disability or illness automatically made you aware of.  Each spoon represents a choice or option and, while the majority of people have so many spoons that they don't notice when one is 'used up', people with disabilities do, and need to be aware of exactly how many they have at the beginning of each day.  Disabled or ill people have to make choices from the moment they get up in the morning, to last thing at night, and these decisions will all affect how that person's day evolves.  Of course, everyone has choices, like what to wear in the morning, what to eat for breakfast, how to travel to work/school etc, but when you have a limited number of spoons, the impact of these choices is much bigger, and their nature also varies.

For instance, Miserandino asks her friend to tell her exactly what she does during the day, beginning with getting up in the morning.  The friend says that her first task is to get ready for work; pretty simple and mundane.  Not for Miserandino, who immediately takes away a spoon, stating that it's not that easy as you didn't sleep well the night before and are exhausted, you have to summon the energy to get out of bed and have breakfast, so that you can take the medication.  Miserandino tells her friend that, by not taking her medication, she is effectively losing all of her spoons for that day. 

The theory goes on in this way, with Miserandino taking away a spoon for every decision her friend has had to make during her daily routine.  It is possible to increase the amount of spoons you have, by using some of tomorrow's ration, but this just means that tomorrow will be all the more difficult and, as Miserandino says, tomorrow may well be the day that you get ill, so being short of spoons could prove disastrous. 

This brief – and not at all as eloquent as Miserandino's – description of Spoon Theory hopefully shows that, if you're disabled or ill, you have to constantly be thinking.  You have to plan each and every aspect of your day, no matter how small it may seem, so as to get the most out of it, without burning yourself out.  It will probably be the case that you have good and bad days, with no way of knowing when a bad day will occur, and this will always be in the back of a disabled person's mind.  Therefore, if you choose to use up some of tomorrow's spoons because you're running low, or maybe you want to do something extra today, there is always the risk that tomorrow will be one of those bad days, and you just don't have enough spoons to get through it.

Miserandino sensed that her friend had begun to understand just a little of what she was going through, and was hopeful that she'd be a bit more considerate and patient in terms of what she can and can't do.  To cheer her friend up, Miserandino says that at least she isn't wasteful of her spoons, unlike the many people who don't need to keep track of them, and thus each spoon she uses is really important to her.  The fact that Miserandino chooses to use up one of her spoons by spending time with this friend, ultimately places a great importance on this choice; it's not that her friend should feel privileged, on the contrary, it shows how much she means to Miserandino.

Miserandino says she now uses Spoon Theory a lot to answer questions that people may have about her life, and it's caught on, with #spoonie becoming a regular feature on twitter.  As Miserandino says, once you understand Spoon Theory, you not only learn more about disability, but disabled people can also learn more about themselves.

I've been trying for days to apply Spoon Theory to my own life, and it's really hard, all the more respect to Miserandino.  Unlike Miserandino, I have a physical disability that is obvious, and I've had it all my life, so I'm not trying to get used to a new way of life, or mourning one that I've lost.  In that respect, I think I have it 'easier', as I never get the 'but you don't look ill' comments, in fact, people rarely question me at all, I suppose it's a case of  'oh right, she's disabled, OK then'.  Also, Miserandino talks about missing the freedom she had back when she was healthy, and how she had to learn how to cope.  Again, I don't know anything different, so rather than learning a new regime, I've had nearly 26 years to develop mine.  Not that life is completely simple, and a bed of roses, but I don't want people to think I'm bitter and twisted.  Yes, there are things I wish I could do, and things that are straightforward for non-disabled people can prove to be a nightmare for me, but I don't have a bad life, not really, and I'm definitely not aiming for the sympathy vote.  So thanks, but no thanks.

Like Miserandino, my life is based on choices or, more accurately, a lack of choices.  At the moment, I don't have a 'typical' daily routine, as I only work one day a week, and I'm sort of between enablers, so I'll give you a hypothetical, yet based on facts, day in the life of Bad Wolf, #spoonie.

Miserandino gave her friend a bunch of spoons to 'start' her day, and asked her to count them, so as not to waste any.  The friend had 12 as it turned out, so let's say I have 12 today too.  I lose a spoon as soon as I wake up in the morning, cos I can't choose when I get up and dressed.  My mother is currently my main carer, and I have to wait for her to come in and take my CPAP – a mask I wear at night to open my airways – off, before getting me washed and dressed.  While we do get up at roughly the same time each day, I have very little control over when this is.  Hence, there goes the first spoon.  I'll lose the second one almost immediately as, although I do have more than a say in what I wear, it is ultimately mother that has 'the power'.  If it's cold, for example, she insists on me wearing long sleeves, thicker tops, and jackets.  The obvious response to that would be 'well yeah, she doesn't want you to get cold', but that's the thing; I don't feel the cold.  99% of the time, I'm too hot, and it's uncomfortable.  It doesn't help that if I'm not lying in my bed, I'm sitting in my wheelchair, so my back is constantly against something, and doesn't get any air.  Mother is obviously aware of this but, due to health problems I had as a child, and the constrictions of my chest, she worries I'll get an infection or something.  Moreover, what I wear is governed by my condition.  On a good day – which is the basis for this post – I can wear whatever's in the wardrobe, weather and mother permitting, natch.  On a bad day, I may have to put on clothes that require the least amount of effort – loose, generally unflattering garments – depending on where, and how bad, my pain is.  So my lack of control over choosing exactly what I put on in the morning takes me down to 10 spoons.  Even if I put on a layout that can be removed later in the day, it depends who I'm with as to whether I actually can do so thus, technically, that would be me losing another spoon then. 

The next logical step would be to have breakfast, right?  Er, wrong.  I don't eat breakfast, largely cos I never feel up to it in the mornings; I usually feel pretty rough actually.  Also, I now only seem to be able to manage one meal a day, two tops.  I deliberately choose not to eat breakfast, so that I can manage a meal later on at lunch time – not always – and feel more inclined to eat in the evenings, when we have our main meal.  Without going into too much of the gory – and embarrassing – details, this stems from an operation I had when I was six, to fuse my curvy spine.  Let's just say, it left me unable to go to the loo without, er, intervention, which, together with my small size, means that I'm not often what you'd call comfortable.  Ahem, right, choosing when and when not to eat; minus one spoon.

Finally with the breakfast thing, not eating in the mornings means I have more time.  I don't always sleep too well, so those few extra minutes I save by not having breakfast, and getting up that fraction later, are pretty priceless.  It means I don't have to rush, which I'm really not up to in the mornings anyway, and gives mother a couple more minutes to herself, rather than helping me eat.

Talking of time, I'd love to be able to slap some make-up on in the mornings but, cos I have limited movement in my arms, this can take me a good while.  I can only get my hands properly up to my face while lying down – cos I'm more relaxed, and less constricted – so putting make-up on in bed, whilst dressed, is not something that can be rushed.  Hence, on an average day, I don't bother.  Bizarrely, this task uses quite a lot of energy too, as my arms get achy, particularly my left, which has a metal pin in it.  Doing too much with this arm results in it bloody hurting but, technically, it's my 'good' arm, so I have to think about which tasks are necessary, and which are luxuries.  Either way, whether I bother or not, I lose a spoon.

If I know the night before that I'll have time to preen, cos I'm not going out till later in the day; or I just want to look half decent, I'll make the effort to get everything out and ready then, saving a bit of time and energy, but subsequently using an extra spoon.  Course, putting make-up on requires taking it off at the end of the day, when my energy supplies are running low; bye-bye spoon. 

I'm now down to six spoons – I've decided to put make-up on – and am planning on going out with my enabler.  Ha, there go four spoons.  I lose the first because it's not as simple as just Going Out; I can't leave plans till the last minute, as I have to arrange a time well in advance, that's suitable for my enabler, friends I may be meeting, and mother, who's effectively being deprived of a car – albeit, my car.  There goes another spoon, as I find travelling in a car dead uncomfortable.  I travel in the back, in my wheelchair, and can feel every single bump and pothole on the road, due to the car's lowered floor, and the lack of cushioning between floor and me.  Even on a good day it hurts, and I often wind up with a headache that lasts the rest of the day.  I'm a bit of a nervous passenger too, following a car accident (see The Event) and, even though I'm much better than I was, I still find longer journeys, unknown roads, and motorways stressful.  Don't even get me started on public transport, becaus even if I could physically, I don't think I could mentally, or emotionally, cope. 

Fitting in with the plans of others results in the loss of another spoon as, if I wanted to go to the cinema, it's not necessarily my decision as to what time I go, or even where – going to a larger cinema further afield requires extra time, which may not be possible.  I rarely bother to go to the cinema for these reasons as, nine times outta 10, the films I want to see aren't showing at a time that's convenient.  Going for coffee or lunch is the easier option, yet still requires much forward planning, as a time that may be good for me and my enabler may not work for friend(s); I couldn't go out in the evening, for example. 

The fact that I've chosen to go out for a substantial amount of time automatically robs me of another spoon, as I find just sitting incredibly tiring.  Once I'm in my wheelchair, I'm unable to alter my position and, though I start off pretty comfortable, it doesn't last long, as my muscles, neck and back soon start to ache.  I often find that, if I've been in my chair for four hours – which isn't that long if you think about it – or more, I really feel it the next day, and don't have a lot of energy to do much.  Thus, planning to go out really requires me 'borrowing' a spoon or two from the next day.

Ok, I'm back home after a day out, I've taken my make-up off, I'm tired and probably achy, and I've got two spoons left.  Tired and achy screams bath, but no, I can only do that on one of the days I have carers in, unless mother's feeling particularly energetic and generous; one spoon.

I'll generally lie in bed and watch TV for the rest of the evening; there's no point me turning in for the night until the parentals retire – which is never late – as I'm rubbish at sleeping, so any noise/movement/light is bound to keep me awake.  Equally, if I wanted to stay up and watch something later, that's pretty much out the question too, cos I can't turn the TV off at the mains, and can't bear the standby light shining right in my eyes.  A bit pathetic, I know.  Lack of control over bedtime, and I am out of spoons.
There we are then, my life as a spoonie.  That would all have happened on a good day; a bad day – i.e. I have a broken bone – would see me with a lot less spoons to start with.  Depending on where I was on the 'pain scale' – one being the lowest, 10 being the worst pain you've ever had – I'd probably be laid up in bed, trying to conserve my spoons.  I won't go into the details of a bad day any further as, frankly, this post is long enough, and I do genuinely have more good days than bad.  Besides, thinking about the 'what ifs?' has a habit of driving me insane; if I worried about breaking something every time I moved – or even breathed, it's happened – then I'd never do anything, and I'd just be completely paranoid.  So let's not go there.

I hope that this examination of Miserandino's brilliant Spoon Theory has helped give you more of an insight into me, and the limitations that disabled people have in general.  While we all have different reasons for losing our spoons, we're all the same in that we notice when we've lost one.  It is crap not being in control, and missing out on everyday social things that a lot of people take for granted.  So if anything, I hope this will make those of you with a disabled friend or relative more understanding of their limitations, and give those of you with disabilities a way of explaining yourself.  Not that we have to, or should, but just in case those awkward questions arise.

BW xxx