File under “Life’s a bitch”

I learned some news about a friend in Italy today.  I’ve not heard from her for some time now and I now know why.  She lost her husband a few months ago.  He’d had progressive MS for some years and she’d cared for him throughout.  Now, apparently there are concerns that her eldest son has the same disease.

I can’t begin to understand how she might feel.

Fear and self-loathing in the North.

I don’t really know where to go with this.  But the last two weeks have been difficult to say the least.  As I type this post, I can feel the urge to shut the laptop down and not write it.  It’s embarrassing to write about.  So the question is, why do it?  Because I need to let it out.  Because I’m tired of bottling it up.

I moved house two weeks ago, which isn’t an easy task.  When you’re solely responsible for moving the lives of two people, it’s harder.  There’s no-one to share the load with.  I’ve organised everything: the new house itself, dealing with the housing association, removals, the packing, getting social services on-side, organising a new care team, new equipment, dealing with the old landlord (of which more, later), swap-over of domestic services, address changes….the list is a long one but it’s all been down to me.  That’s just the way of things – it couldn’t have been any other way.

I’ve felt my stress levels rising rapidly (I can’t even write those words without feeling sneers of disapproval – don’t ask why or from who/where – I just do).  I’ve been lucky insofar as I’ve had my Mum staying with us to help with the practical things.

It got to the point that, on moving day, I was sick of hearing my name and having someone “need” to have my input or approval.  I was travelling between the new house and the old, overseeing everything the movers were doing, dealing with signing the agreements, everything.  And in the quiet minutes, being a carer.  And in the tiny cracks of time between that, being a husband – rather, trying to be.  The panic attack I had should have sounded a warning bell but I had to keep going.

We’d been in the house three days when I was involved in a car accident.  It’s in the hands of the insurers now which feels to me a little like it’s sub judice.  Everyone involved was OK and MW wasn’t in the car at the time.  It shook me like hell, and it’s been a grind dealing with insurers, garages, solicitors, the police.  It’s something I could have done without.  I could tell that I was in a bad way, mentally, but no-one can take over from me.

Another blow came the following day.  Our old landlord sent me an e-mail which put me into a spin.  He’s sought to keep the bond we left, giving the most flimsy reasons for keeping it and ensuring that we’d need to fight for it by legal means.  This, along with the fall-out after the car accident was all I could take.  At first, I was just numb.  Working on auto-pilot.  But, at the beginning of last week, I was in a bad way.  Crying all the time.  Worrying about everything.  Scared of everything.  Tired of all the responsibility.

I was thinking things that I’ve thought before and they scared me.  I just wanted to say “make sure that MW is looked after” and disappear.  I didn’t even know what I meant by that, only that I didn’t feel worthy of being around.  I don’t just mean unworthy of being in this place – the new house – at this time.  I mean unworthy of being anywhere.  That I’d made people worry, that I’d disappointed people.  That I’d let everyone down, especially MW.

My Mum was about to go home (to be fair, she’s been here for about two months now) but I had to ask her to stay a little longer.  I suspect she could tell by my behaviour that I was in a bad way.  Fortunately, she agreed.  She’s still here.  I don’t know where I’d be if she wasn’t.

I’m tired.  I’m not sleeping properly or feel like sleeping half way through the day.  I’m still crying but not as much.  And I’m still scared.  Still fearing the phone ringing, the post arriving, wondering where the next setback’s coming from.

Anyhow, this post’s rambling about with no real focus.  Which is pretty much where I’m at right now.  Rambling about trying to keep going as best as I can.  But it’s a struggle.

Life’s hard.

I’ve not blogged for a while as I’ve been moving house and crashing the car.  In the same week.  No injuries though and MW wasn’t in the car at the time.  Maybe I’ll explain more in a future post – this post is really meant to keep the blog ticking over.

The new house is an adapted bungalow with the facilities MW needs to live day-to-day.  It’s very good and we’re just getting to grips with everything it has to offer.

I now live in a community that has a few residents with disabilities.  My immediate neighbour is a man who suffered a stroke and is now reliant on his wife to care for him.  He uses an electric wheelchair to get about.  He can’t be more than 5 years older than me.

Another neighbour, who’s lived here for 10 years or so, had an accident.  I say accident, he was pushed off a bridge onto concrete.  He broke just about everything and was in a coma for 9 months.  He told me that he’s still determined to walk.  He, too, uses an electric wheelchair to transport himself around and I’d say he’s younger than me.

There’s no inspirational motive for this post – no ‘moral to this story’.  I merely observe that life’s bastard hard on some people.

This is the reality – a post written for Carer’s Week.

I was asked by the organisers of Carers Week 2013 to write a blog post for their site based on the subject of being “Prepared to Care”.  I’ve reproduced it here (for no other reason than to keep the blog ticking over).

11 other carers wrote their stories about caring for the same site.  Please take the time to go and have a read.  Every carer’s experiences are different and it was educational for me to read their accounts of being a carer.

Meanwhile, here’s my post on the financial aspects of being a carer.

Over the 8 years I’ve been caring for my wife, I reckon I’ve lost over £175,000 in income (give or take a promotion or three) and as a couple, the figure reaches well over £250,000.  When my wife was diagnosed with MS in 2005, there was no independent financial adviser tempting us with a glossy brochure illustrating the potential losses that disability and caring can bring.  No presentation slides and projections for the following 5 to 10 years.  In fact, we didn’t even think about finances that much other than ensuring we could scrape enough together to cover our monthly outgoings.

If you can sense a little sarcasm in the above paragraph, you’re right.  However, there is a kernel of seriousness in there as well.  While there are a number of organisations who will help you with filling in forms for various benefits, none of them can adequately prepare you for not having anything like as much coming in as you might have had prior to taking on the caring role.  Will you, the carer, be the ‘breadwinner’ where you might not have had this role before?  Can you still ‘work’ while being a carer?  The person you care for may have such extensive needs that ‘working’ is no longer possible.  To suddenly go from not having to worry about bills to wondering if you’ll be able to get the shopping you need is a hell of a shock.

Why have I put quotation marks around the word “working”?  Because, despite many speeches to the contrary from politicians of all flavours, caring isn’t viewed as real work.  It’s just something you do that prevents you from doing real “work”, right?  I can tell you from my experience that it’s bloody hard graft.  Hard graft for little recompense.  Carers are a conservative’s dream workforce.  And, perhaps controversially, I’m not referring to care-workers.  They’re different.  While they may not be adequately recompensed for what they do, they’re entitled to minimum wage and health & safety protection.  Carers have no employee rights, no health and safety enforcement, and all for £59.75 a week.  If you provide care for a bare minimum 37 hours a week, this is £1.61 an hour.  Obviously, that hourly rate reduces the more hours you care.  I certainly do way more than 37 hours – and way more than the 48 hours specified in the European Working Time Directive.  There’s no choice.  Caring has to be done because the person you care for needs the help.

When you’re used to an income somewhere around average salary, a drop to Carer’s Allowance is a big shock.  I was a Civil Servant.  And it wasn’t just a job, it was a career.  I’d been promoted a couple of times and was on the list for another.  My wife was also ready for promotion.  Then MS appeared out of nowhere.  We’d spent the three years up to and including 2004 dealing with divorce, court cases, and helping with my Dad who had terminal cancer.  2005 was supposed to be the first year of our future.  It turned out to be the first year of MS in our lives.  And a pretty vicious, progressive form it is too.  We were married in the January and by March the symptoms were really kicking in.  Diagnosis came in May.  Right from the off, my wife needed help to look after herself.  We lived nowhere near family and couldn’t ask friends to do it.  It was just us two.  So I became her carer.  Not a post I’d applied for.  Not one she’d advertised.  But that was the reality.

I had to stop “working” because I had to provide so much care for her.  (The photo attached to this post is from 2006 – her MS has progressed considerably over the last 7 years.)  Needless to say, my wife had to give up too.  Overnight, our “earning” capacity dropped by over half.  You learn pretty quickly to do without your disposable income.  You learn, or at least I had to learn very quickly, that every penny has to be accounted for every month.  That there’s no “fat” available.  Your lifestyle has to change but, with disability and caring, your lifestyle is changed for you.  Things like going out become a thing of the past, so you’re saving money there, right?  You concentrate on keeping a roof over your head, putting food on the plate, and the home heated and lit.  That’s it.  The other stuff doesn’t exist any more.

Nothing and no-one can really prepare you for losing so much if disability should enter your life.  Caring is the same.  Your sense of worth is conditioned by society to be bound up in what your income is.  You’re judged on it by the outside world, even if they’ve not met you – a cursory glance at today’s media will tell you that.  And you certainly spend many a waking hour judging yourself on it.  “Is this all I’m worth now?"  Despite the occasional political speech or media article eulogising the work of carers whenever there’s an event like Carer’s Week, you can’t help but measure yourself against the bulk of the stuff you see in the media.  Who’s got what?  Who’s doing this and that?  Where to go on holiday this summer?  Etc, etc, etc.  The Joneses are now a long way out of sight.

Think about your income.  Think about what you might be doing with it over a weekend, over the summer.  Then imagine over half of it gone.  What would you do?  This is the reality for a lot of carers.  Would you be prepared to care?

Dogma breeds hate

dogma. noun.  A principle or set of principles laid down by an authority as incontrovertibly true.

hate. noun.  [as modifier] denoting hostile actions motivated by intense dislike or prejudice.

Given the lessons we have been taught by history, surely it’s unthinkable that any government would marginalise a section of people to such an extent that its citizens would openly attack that section of people in public?

Right?  Wrong.

I didn’t know whether to blog this or not but there’s too much in my head for a series of tweets.  I’d flood my timeline on just this one subject.  This week, I’ve come across the tweets of Thomas Hemingford.  Mr Hemingford is a man who cares for his disabled wife.  I know nothing more about his personal circumstances than what’s written in his Twitter bio but I have read his tweets with a mixture of emotions and thoughts – incredulity, sadness, anger, empathy.  Mr Hemingford was out for a meal with his wife and a friend when he and his wife were subjected to a diatribe from a man who Mr Hemingford describes as a “Tory”.  He described this verbal attack on both him and his wife in great detail in his tweets which have since been collated via Storify.  I urge you to go and read them.  For one individual to behave in such a despicable manner doesn’t shock me as much as it should.  I’m a realist and am resigned to admit that there will always be people who will attack disabled people – mostly through ignorance or a desire to disguise their own inadequacies as humans.  What shocked me more while reading this is the attitudes of the other diners around them.  I won’t relay the entire incident here – you can read that in the links above – but attitudes veered from open support to tacit approval signalled by doing nothing during this ‘15 minute’ attack on a disabled woman and her husband and friends.   

I wrote above that the attacker was described as a “Tory”.  Mr Hemingford’s tweets go on to say that the attacker said he “supported Cameron” and that the onslaught was like listening to the Daily Mail.  I talk to a few people who are affected by disability and there are two things that make them angry.  One is the current government, and the other is the Daily Mail.  The present UK government is bent on cutting huge swathes from the amount spent on public welfare.  On the face of it, the thrust behind these welfare cuts is to weed out fraudulent claims but what’s happening is more of an ideologically driven push against the welfare state.  To assist in this aim, the Govt. has sought to cast aspersions on the character of those who take money from the welfare state.  One phrase from a ministerial speech reads, “where is the fairness…for the shift-worker, leaving home in the dark hours of the early morning, who looks up at the closed blinds of their next-door neighbour sleeping off a life on benefits?”, whilst the Prime Minister speaks of generations languishing “on the dole and dependency”.  This is the official line from politicians.  Their right-wing supporters in the press will go even further using words like “lazy” and “scrounger” as part of their anti-welfare rhetoric.  

This harassment has been extended to disabled people.  [quick aside, the phrase “disabled people” feels a bit awkward to me but I don’t have an alternative at present]  Disabled people have been portrayed as being freeloaders off the state in the press, in getting “free” cars at taxpayers’ expense**, being more capable than they’d have you believe.  The comments sections of any UK paper or periodical that writes about the economy will include responses on how the disabled are a burden to the taxpayer, regardless of the editorial line of the original article.  The New Statesman recently published an article about how media coverage of disability and disabled people has become more negative over the last decade and more.  It makes interesting but very frustrating reading.  Particularly as the coverage seems to have made some people feel “empowered” to openly harangue the disabled, with the relentless stream of invective from parts of the media shaping their opinion.  It’s in the papers so it must be true, right?

As MW’s carer, I’m fortunate in that I’ve never witnessed any attack on her.  And she’s not reported anything happening whilst she’s been out with anyone else.  That’s not to say I’m not paranoid about it.  Whenever we’re out I’m always watching the reactions of others towards MW, and us both.  On the whole, people are understanding and kind.  I have seen some facial expressions which might have belied a less neighbourly attitude but nothing has been said.  And certainly nothing on the scale of that suffered by Mr Hemingford and his wife.  From his tweets, both he and the friend that accompanied them displayed enormous dignity during and after this attack.  I cannot say that I would do the same.  I’d rather not have to find out.  I’m sure the Hemingfords would have wanted to avoid it too.

I call what happened to Mr & Mrs Hemingford “an attack” and the person who perpetrated it “an attacker” because that exactly what it and he were.  They’re as offensive as any other assault on an individual of a discriminatory nature – just because there’s not yet a crime of disability hate doesn’t mean it’s any less of an injustice.  If we were discussing a similar attack of a racist or homophobic nature, for example, the attacker would have been dealt with far more harshly by those around him.  Since no-one else (bar their friend) made any attempt to defend the Hemingfords, I can only surmise that discrimination against disabled people is acceptable to a significant section of society.  That this individual seemed to assume he had implicit support for his views, and his attack, from both the popular press and from the Government of the day makes it more revolting still.

History teaches us that economic difficulty has been a catalyst for authority to behave in an abhorrent manner towards minorities and weaker groups within society for its own end – with appalling results.  George Santayana was right, “Those who cannot remember the past are condemned to repeat it”.

We have learned nothing.

** From the Daily Mail – – sorry, I won’t link directly to the Daily Mail.

Still going. I don’t know about strong.

Before I carry on I want to clarify something about this blog.  Apropos of nothing at all other than something that came to mind which burrowed its way in and won’t go.  This is my space to vent – this is my outlet, if you will.  I don’t have a wide circle of people that I can talk to at the drop of a hat about what I’m thinking/feeling, etc., so this is my way of letting some of it out.  If you’re looking for witty, inspirational writing on how caring is a challenge to conquer, to face with a smile and overcome head-on, and how life is a big bag of love and roses then you’ve come to the wrong blog.  I try not to be overly pessimistic but I am realistic.  I’m aware that what appears in this blog is pretty dark, even miserable at times.  I’m not sorry for that.  What’s happening is a struggle and I will reflect that.

I’m feeling a bit stressed at the minute.  Which is to say more so than usual.  I had another panic attack the other week.  Cue thinking I’m having a heart attack; cue frantic call to paramedic then ECG and blood pressure tests; cue calling neighbour to come round to sit with MW if should need to go to hospital; cue feeling utterly ridiculous, hopeless and pathetic, especially when the physical diagnostic tests came back all clear.  I have high self standards.  Those standards tell me that I ought to be able to cope with everything thrown at both of us because, outwardly, I’m the healthier of the two of us.  Even using the word “stressed” makes me feel feeble.  My mind and body tells me that isn’t true.  When I say I’m a “bit stressed” I must admit that I’m more than a “bit” stressed.  I’m stressed to the point of my body giving me messages to rein it in a bit and calm the fuck down.  But it’s easier said (or thought) than done.  When I list it all, I guess I’ve got a fair bit to worry about.  

I’m stressed about MW’s constant deterioration.  She can’t move her legs voluntarily at all now.  The only movement comes with spasm – so her legs have to be manipulated to ensure proper blood flow.  Her arms are losing strength but gaining ever more tremor – sorry, fasciculation (must be accurate).  Independent feeding and drinking are becoming more difficult.  She’s allergic to the morphine patches she’s just started – not to the morphine but to the adhesive patch.  They make her skin blister.  The MS nurse tells me that it’s important to maintain skin integrity because sores and patches of skin inflammation will make her MS symptoms worse.  And then there’s the blood clot.  The injections are nearly at an end but we’re in contact with so many medical people that I’ve asked if they do a health equivalent of frequent flyer miles.  Or at the very least Nectar points.

MW’s father is ill as well.  Her parents live at the other end of the country from us so we can’t see how he is at first hand.  MW hasn’t seen her Dad for almost two years.  Not that they don’t get on – they do.  It’s just that the distance between them and their respective health difficulties has made it pretty much impossible for them to see each other.  Her Dad has a form of leukaemia and he’s been suffering with some symptoms recently which has laid him pretty low.  These may or may not be connected to the leukaemia but her Mum is worried enough to not feel confident enough to come up and see us.  It’s been almost six months since she visited us.  MW’s parents are both in their 70s now so their good health can’t be taken for granted.  The thought is always in the back of her mind that her parents won’t be around forever.  It’s a struggle trying to keep MW from worrying because it will make her MS symptoms worse.  

I’m also worried whether the money we have coming in will stretch far enough.  I know I’m not alone in this.  But MW has developed a penchant for buying clothes that she doesn’t need just because they’re pretty.  Thing is, her memory and mental acuity are worsening and she forgets what she’s bought.  She goes out with a carer a couple of times a week and when she gets back she’s laden with little carrier bags.  None of the items are expensive individually but it all adds up.  It falls to me to ensure that what we have coming in will cover everything going out plus be able to eat.  We don’t have a hedonistic lifestyle, neither of us drink or smoke, but we want to be able to live rather than exist.  Frankly, it’s a struggle.  I’ve asked her repeatedly not to do it.  I’ve got angry.  I’ve pleaded.  I’ve spoken to her rationally because she’s not a child.  Yet she forgets.  I’m having to slowly realise that she’s losing these abilities, and that she is, in a way, becoming more child-like.  I don’t want to treat her like she’s six and give her “pocket money”.  Maybe I’m just waking up to the fact that this is another irreversible change in her personality caused by those damn sheep in her brain (on an MRI scan MS lesions are little white blobs which MW called “sheep”).  Whatever the “cause”, it’s another tiny chink in the relationship.

In short, I feel like I’m being closed in from all sides and struggling to keep my head above water.  I spend a lot of time inside my own head – if that makes any kind of sense – trying to make sense of everything and remain sane throughout.  I try to second guess MW’s MS so its effects are managed as best as possible.  I try to ensure that we both are as comfortable as we can be given the circumstances we’re in.  I feel myself getting angry and frustrated on a more frequent basis.  Somebody used the word “inspirational” to me the other day but I genuinely, genuinely cannot fathom why.  I know it was meant as a compliment, and I am flattered.  But when I look at what’s happening to me and how I’m dealing with everything, that is the last word I would use about me.  I’m just trying to do the best I can and it ain’t easy.

As I wrote in the first paragraph, I know this blog can be a bit grim.  I’m not going to apologise for that.  I don’t spill all this out on Twitter because people would soon get sick of it.  I’d rather get it all out on here – this is my blog, for my own benefit because, without it, I’d be in a much worse place.

Dodging bullets

I’ve got to tell you, last week was pretty scary.  I’d noticed MW’s leg to be a little swollen for a couple of weeks – actually, it was much longer than that but they’ve swollen before and was told it was just benign swelling.  I must admit to rarely thinking it’s *just* anything considering the severity of MW’s symptoms.  So, when the District Nurse called to look at yet another pressure sore, I asked her to check the swelling.  “Oooh, it is swollen, isn’t it?  It’s about 2cms bigger than the other leg and it’s not hot or anything but when I go to the GP’s surgery later this morning, I’ll chat to her about it.  It could be a DVT.”

Fucking hell!  A DVT.

In a previous life, I worked in the Civil Service.  An environment that loves to abbreviate words and phrases wherever possible – thus giving those phrases an implied importance way beyond their actual significance.  I guess the health services do the same for speed in time-critical situations.  But a DVT – or Deep Vein Thrombosis to give it its Sunday name – is a pretty frightening prospect and one that belies its otherwise harmless abbreviation.  I felt a bit of a chill when she said it.  Partly because I knew how serious it could be and partly out of guilt at letting this swelling go unchecked.  Truth is, as a carer, I never know when to push the “panic button” or when to let something take its natural course and see what happens.  I panic at the slightest change in MW’s symptoms but I can’t go shouting to the nurses or the GP for the smallest thing, can I?  That’d be ridiculous.  It’s tempting though.  I’m no professional at dealing with this and there’s no training to help a carer cope with what gets chucked at them.

So, back to the swelling.  The nurse rings from the GP’s surgery later that morning and said that the Dr wanted to see MW later that day.  Appointment booked.  We turn up and MW gets examined.  The swelling is a cause for concern and the GP refers MW as an emergency admission to the DVT clinic at the hospital with a letter explaining her findings during the examination.  Half an hour later (as it begins to snow like hell!) we’re at the DVT clinic waiting for a blood test.  More examinations and bloods drawn, and an hour or so wait for the results.  The possibility of a DVT is still there but they won’t know without a scan.  MW is given a clot-busting injection and a scan is booked for the following morning.

Back at hospital for an ultrasound scan.  Not easily accomplished given MW’s lack of mobility but we get there.  They find a small clot in her calf but it’s not in a deep vein area, and there’s nothing above the knee – which would give greater cause for concern.  Dodged a clot-sized bullet.  A DVT can travel up the body and can be dangerous if it reaches the lungs.  Fatally so.  I’m no expert and I ain’t going to Google the damn thing but I’m content with what the Dr said.  Actually, the Dr was very soothing when delivering the news to us.

I’d noticed that MW was very, very nervous about it all.  I comforted her (well, I think I did) by saying that it’d been caught before anything dangerous occurred, she’d not displayed any of the symptoms that would tell us that the clot had moved, etc, etc.  Although I don’t know who I was trying to convince.  Her, looking pretty scared at the whole thing?  And who could blame her?  Or me, who was chewing himself up for not acting sooner.  It’s hard work trying to give practical care and emotional support at the same time, while you’re shitting yourself at the responsibility of it all.  Fuck knows how MW copes with it all in her head.  She’s the one experiencing all these symptoms, and relying on me and others to make sure she’s not at risk.  I know she relies on me and trusts me.  I guess I’m scared of making a mistake and putting her in danger.

Anyhow, MW’s to have daily injections of a clot-busting drug for 6 weeks.  She decided against taking Warfarin orally.  That was a scary prospect too far, I guess.  Plus she didn’t fancy having regular blood tests at hospital.

It’s made me think that I’m treading a fine line between being alert and being on-edge.  There’s no way around it.  I’ve just got to learn which to be and when.

Overcoming weakness

What was I saying about thresholds?  I’ve just spoon-fed MW her entire evening meal tonight.  For a 46 year-old adult who would ordinarily be in the prime of her life, that has got to be one of the most ignominious things to have to happen to you.  In addition to the tremor that already exists in MW’s arms, she is now losing strength and movement in them.  Tonight she couldn’t hold a teaspoon so she allowed me to feed her.  I’ve done this before but only for one or two forkfuls/spoonfuls where necessary.  This was the first time I’ve done it for the whole meal.  She’s being stoic about it but I can see in her eyes that it’s upsetting.

In addition, MW told her mother about the loss of function in her arms.  Cue tears and self-blame from her mother for not living nearer – her parents live some distance away.  Upset all round.

There have been better days.

First foot.

Threshold.  I’ve heard or seen this word a few times this week.  It’s New Year and my Mother belongs to a generation for whom the tradition of ‘first footing’ is still alive – crossing the threshold with items to bring good luck for the year ahead.  

The same word cropped up in a couple of other conversations over Christmas/New Year.  I was talking about MW’s condition with friends who I’ve not seen or spoken to for a while.  It struck me that a progressive condition like MS* can be looked at as a series of thresholds that have been crossed.  That is, each new symptoms felt or each lost ability to do something independently is viewed as a threshold crossed.  Or, in the most recent case: each new, more powerful medication required to alleviate the effects of symptoms on her body.

This year has already seen MW cross another threshold.  The neuropathic pain she feels has been so bad that she’s exhausted what the specialist nurse considers her first line of attack for pain relief, i.e. a combination of tramadol and pregabalin.  MW has now been prescribed buprenorphine patches – a very strong opioid analgesic.  In essence – morphine.

To me, morphine brings with it connotations of palliative care.  Not the kind of phrase that instils positivity, despite the fact that palliative care is something that is intended to help pain relief in a wide range of chronic conditions, not just those towards end of life.  The morphine is helping but the pain is tolerable rather than eradicated.  No-one’s actually said as such but the demeanours of both the nurse and GP, and the way the drug is handled by pharmacists, tell me that this is a fairly major development in MW’s condition and medication history.

Other “thresholds” have been crossed in the last few weeks.  MW is suffering more from weakness and tremor in her hands/arms.  Increasingly, there are times where she can’t hold/control cutlery and cups – particularly when tired – and I have to feed food and liquids to her.  I also have to “feed” meeds to her as she can’t hold and control anything as small as each tablet she has to take.  And MW’s inability to move is causing new pressure sores on her legs/feet.  Inflatable “boots” have been ordered to try and alleviate them thanks to a fortuitous surprise visit from a district nurse.

So, we first foot into another year of MS.  With a bit of luck there won’t be too many thresholds to cross during the year ahead.  

*Disclaimer:  Yes, I know that MS isn’t an automatically progressive condition but this blog pertains to MW’s condition which *is* progressive.  Why didn’t I clarify it?  I am doing.  This is the clarification!

We can’t all be unique. Can we?

Pictograms of the Paralympics 2012 - © copyright belongs to LOCOG and IOC

I’m not known for giving opinion on this blog.  It’s usually more of an outlet for what’s swirling about in my head.  But we have the Paralympics taking place in London right now and I’ve been interested in public reaction to people with disabilities; reaction to the achievements at the Paralympics, media coverage of those Games and to disability in general – including opinions from social media, and the potential reaction of UK Government to it all given their programme of welfare reform.

Prior to the Paralympics, certain strands of the media have taken great delight in portraying all disabled people as “the shirking classes” ¹.  Now the Games have begun, the position has shifted slightly towards “Aren’t the Paralympics proof that even the most physically challenged can achieve awesome feats?” ² – with emphasis on “most physically challenged”.  I’m not going to link to these examples because I don’t want to drive traffic to their sites.  As you can guess, I disagree very strongly with both viewpoints.

Since the start of the Paralympic Games, I’ve lost count of the number of occasions I’ve seen sentiments written on Twitter along the lines of the second example above.  Hashtags such as “#anythingispossible” are, I imagine, well-meaning and innocent on the surface.  Others like “#inspirational” very accurately describe the achievements of those taking part in the Paralympics.

However, my personal experience of disability, such as it is from a carer’s perspective, is different.  I can’t agree with the one-size-fits-all approach to disability (or anything else for that matter).  Is it reasonable to think that anyone with a disability can just rock up and be able to perform like that?  No.  It’d be ridiculous to think that.  Those taking part are individuals.  And are only representative of themselves, maybe their disability, but they mostly represent their body’s ability to perform despite the limitations they face.  Note the words “their body’s ability”.

I’m sorry but no amount of positive thinking is going to make someone’s body do what it is incapable of doing.  No matter how determined you are, your thought processes can’t control your nervous system if it’s broken.  It’s “#onethingthatisimpossible”.  I see MW struggle to do the most basic things, such as feed herself, and it makes me angry that people in positions of influence, i.e. the media, are so blinkered by their particular dogma that they are happy to write articles and “opinion pieces” which all but say that disability is just a matter of attitude.  That just isn’t true.  My personal experiences tell me so.

When opinion becomes a tool with which to drive Government policy, it becomes a little more insidious.  Comments from some Government politicians watching the Paralympics seem to hint at a belief that Paralympians ought to be the example that all disabled people should aspire to.  They’re suggesting that disability is something that can be treated in a catch-all manner.  It would be very convenient for all concerned if that were true but it isn’t.

I’m not looking to denigrate the achievements of those who are competing at the Paralympics.  Paralympians are, like Olympians, the best at what they do.  They are elite athletes.  We should all note that they are the exception and not the rule.

1. http// – by Kirsty Walker

2. http// – by Christina Odone