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.

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.

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.

What’s it all about?

I feel I should take the time to explain a little more about why I started to write this blog.  Its primary purpose is to give me an outlet, some catharsis, call it what you will.  In other words, I get to let out the myriad thoughts, memories and feelings that keep spinning around in my head.  My first post on this blog was a response to a particular trigger and the other posts have come to mind easily as they’re all strong memories or feelings for me.  If you’re reading this then it won’t have any kind of coherent structure.  I’m not writing a book, there’s no strict timeline here, just a jumble of words as they appear to me.  I don’t have a set agenda, and everything you read here is genuine.

Here’s what I’m NOT looking to do:-

  • Come across as a know-it-all.  I’m not offering advice here.  I’m no good for providing insights into all carers’ lives – only mine.  If you’re a carer and you recognise any of what I say, that’s great.  I get that there are shared feelings and experiences in the roles of carers – no matter what age you are or what particular disease/illness/disability you care for, there is common ground.  I’ve added a bit where you can ask me a question if you want to but I’m not qualified to give you any magic answers about caring- I’m not the Oracle ( or Ceefax for that matter…….. ask your parents! ).  If it seems like I am trying to preach, I’m sorry and you can give me a slap if we should meet.
  • Look like I’m self-aggrandising.  The idea of me coming across as “look at me, aren’t I great” fills me with horror.  I’m not looking for sainthood – if I’m brutally honest, my view of myself is considerably lower than it ought to be.  Maybe I’ll come back to that in the future.  If you do spot any arrogance, I’m sorry and see above for suggested action.

As a sort of quasi-therapy, blogging is definitely tough love ( When I cry it doesn’t offer me tissues *sniff* ).  These posts are difficult to write because of the subject matter.  But if I didn’t include the painful things, if it wasn’t warts ‘n’ all ( great phrase – who says the tabloid press aren’t educational ), there’d be no point doing it.  I might as well not bother.  Which means that a great deal of what I write can be a bit dark and depressing.  I can’t apologise for that.  Just as I can’t shy away from it.  I will try to lighten the mood occasionally but I’ll be reflecting the mood that I’m in while I’m writing.

So…… I get really *really* nervous whenever I post something new but I hope this tells you a little more about the what and why.  And with that, thanks for reading.