Category: Uncategorized

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.

There`s a rock
In my heart
That can`t be broken
Now there`s
One inch of heaven
That is open for me
As I walk down a vacant street
With rain in my eyes
Call across the coal dark water
Waiting to see…

Waiting to see…

The sunrise

One Inch Of Heaven – The Silencers.

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.

Bit of a moan

I’m tired of being a grown up.  Scratch that.  I’m tired of being THE grown up.  Tired of being the one who makes all the decisions.  Tired of having to be responsible for not only my life but that of MW.  Tired of living the lives of two people yet not having a life of my own.

Once in a while it’d be nice not to have to think, or worry, or plan.  To just be, and have someone else take care of the minutiae of life for a while.  To look after me for a change.  I can’t remember the last time I was truly happy with life.

I’m having one of those days and wanted somewhere to let off steam.  And if I can’t do it here, where can I?

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!

Hiding in a plain site.

Recently I was approached to take part in a radio programme on MS and caring which is planned to be broadcast on a regional station sometime in the near future.

A producer had come across this blog and had wondered if I’d like to give my account of having MS in my life and being a carer.  I must admit that it was a tempting offer.  Perhaps I might get the opportunity to debunk a few myths about MS and disability?  I might also get to tell the story of being a carer.  About how, for me, they are full time responsibilities – more than full time.  Maybe I could redress the iniquity felt by carers when faced with the dreadful press we get from various corners of the media.  It was an appealing idea but it didn’t take me long to decline it.

Why?  Because while I’m happy to write about how being a carer affects me – and that’s what this blog is – I’m not prepared to concede control over what comes out about MW.  If she decides to say something herself, that’s fine.  But it won’t come from me.

While I’ve given a little information out about me – and us – I like being able to hide behind the anonymity an on-line blog gives me.  I may change my mind in the future but this is how I feel now.  If I was going to participate meaningfully in a radio programme, it would have been ludicrous to say “I’m not going to answer such and such a question” or “I’m not prepared to tell you that about me”.  Particularly if I wanted to give a full and honest account of life as a carer, which it merits.

I’m also wary of people’s reaction to what I write.  It’s a little scary putting your head above the parapet and opening yourself up to the opinions of others.  I’m not going to pretend that everything’s a bed of roses in life, and sometimes I’ll want to write something that’s critical of the life I find myself/ourselves in, or even critical of MW.  I have a lot of thoughts born of frustration and this blog allows me to vent those thoughts.  And sometimes the subjects I don’t write about are the ones that affect me most deeply.

I’ve also become aware that, very occasionally, people will project their perceptions or assumptions of my character onto me, which have been mostly positive but don’t take into account that this blog describes what happens to me.  It doesn’t give the full picture of who I am.  I’m not naïve, I can imagine the stick I’d get if those people were to think that the real me doesn’t stack up to their perceptions.  I’m as sensitive to criticism as anyone.  More so – I don’t have a very thick skin.  Right now, I don’t think I could handle the grief that might come from exposing everything about me and my life on a radio programme.

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//www.dailymail.co.uk/news/article-2018874/Incapacity-benefit-Just-1-14-sickness-claimants-unfit-work.html – by Kirsty Walker

2. http//blogs.telegraph.co.uk/news/cristinaodone/100173256/the-disability-rights-lobby-should-think-twice-before-opposing-necessary-reforms/ – by Christina Odone

No glee, no win.

Something struck me today while having a coffee with a friend.  And that’s the effect on other people when I describe what happens in my and MW’s lives.  When I’m asked how things are going, I’m often torn as to just how much I say.  And I’m never quite sure just what to say.  I’m not going to lie about it, there’s no point in that.  Everything I say or write has been absolutely honest.  Which is my point.  It’s honest, but it’s grim.  Or, at least, it can be construed as grim by some.  Even skimming the surface of things can be unsettling.  

If I say that things are difficult, it doesn’t really explain anything.  So, I’ll expand on that.  Only slightly, mind.  MW is deteriorating, she’s losing feeling from the waist down (let alone lost movement).  She’s losing upper body strength and sleeps a lot.  The need for sheltered accommodation is very real now.  In our forties.  There you go.  What’s that?  *counts*  3 sentences?  3 sentences that give an idea of what’s going on but don’t delve too deeply.  Trust me, there is a lot more detail that I don’t talk about.  But when I say them (or write them) in response to being asked, “How are things?”, I get the impression that it’s an awful lot to take in.  And, I guess it is.  I see the person I’m talking to imagining how things are and how they’d deal with things in the same position – and that imagining is done in a split-second – and I see the realisation that it really is difficult.  I live with these circumstances every day so I’m hardened to them.  But I’m sensitive to the way others react when they hear (read) what’s happening here.  I don’t want to bring your mood down by telling you things.  I’m not going to lie to anyone though.

I’ve started pausing………………………..before answering the “How are things?” question.  Because I’m aware that the reply is a bit of an emotional hand grenade.  So, if you do ask me how things are, I’m not ignoring you – I’m just thinking of the best way to tell you without ruining your day.