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.

Wait? What? What just happened…..?

Do you know what a PHQ9 is?  Or a GAD7?  I do.  These are check sheet tests used by the medical profession ( among others ) for people who are showing symptoms of anxiety, stress and/or depression.  I have filled in quite a few of these test sheets.  One of the PHQ9 questions reads as follows: 

“ ( Over the last 2 weeks, how often have you been bothered by the following problems ) Feeling bad about yourself – or that you are a failure or have let yourself or your family down? ”

This question resonates with me emphatically.  Because that’s how I feel.  Like I’m some sort of failure.  A hopeless case.  Why?  As I’ve said in previous posts, MS has taken so much away from us, from me.  My role is not what society would deem to be the normal role of a husband, of a man.  Look at any newsagent’s shelves and you’ll see many instances of people undertaking caring roles.  These people are celebrated for their achievements and how they’re able to cope with what life throws at them.  Great, yes?  Look again.  And tell me what publications you see these stories running in.  Publications which are targeted squarely at the female market.  Now look at the male end of the market – anything from GQ and Esquire through Men’s Health to the likes of Loaded, Nuts, et al.  How many of these magazines are carrying similar stories?  None.  Nil.  Not one.  I accept that there are now magazines aimed at fathers, FQ to name but one.  Great, these are caring role models aren’t they?  Yes, to a degree.  But there are major differences in those fathers and doing what I do.  What they do and what I do are NOT the same thing.  I have no contemporary benchmarks in the mainstream media for what I do.

Being a carer is a very isolating business for me.  It’s physically and psychologically demanding.  Yesterday afternoon I was sitting outside crying to myself after a particularly fraught few days.  Little did I know that the day was yet to get worse.  I’d been trying to keep up appearances for a few days but secretly feeling a bit disconsolate.  I’ve not been able to see any brightness in life.  I’m 40 years old and I feel I should be getting more out of life.  And here’s where the question from the PHQ9 comes in.  Because all I see from society, from the media, are female role-models for carers, I feel like I’m not doing what I ought to be doing in life.  So I feel like I’m letting my wife down – more importantly, I’m letting me down.  I start beating myself up for getting so bogged down in it all that I begin to think about chucking it all in.  Which makes me feel like I’ve failed as a husband.  Failed as a carer.  Failed as a bloke.  But that’s not a great thing to do, right?  So, I bottle it all in and get on with what needs doing.  Until yesterday evening…

I was making dinner and I felt a gripping sensation at the top of my stomach.  It’s just wind, it’ll go eventually.  But 10 minutes later, it’s not gone away.  Try and drink something fizzy, that’ll do the trick.  No.  It’s got worse.  So I call the neighbours to come and keep my wife company.  Now I feel dizzy, and my fingers are tingling.  My heart’s thumping a gabber beat that I’ve no particular desire to dance to.  And I’m sweating.  A lot.  I can’t go to the GP as it’s closed so I try the out-of-hours service where I’m asked many questions and told I’d receive a phone call back inside 20 minutes.  20 FUCKING MINUTES!!!!  I FEEL LIKE I’M HAVING A HEART ATTACK!!!!  20 MINUTES IS NO GOOD TO ME!!!!  I dialled 999 and called for an ambulance.  When it arrives, I’m wringing wet with sweat and my heart’s gone speedcore.  I have various wires and nodes attached to me and my heart output is printed from an echocardiogram machine (ECG).  They take me to hospital where blood is taken, further ECG tests are done, and I’m left in a side room for a couple of hours while a doctor becomes free.


Because I am, otherwise, normally healthy, this is diagnosed as a panic attack.  A severe one.  Many questions are asked about the state of my mental health and I answer candidly, and because I’m waiting for an appointment with a counselling service, I’m discharged home.  Physically feeling better.  Definitely feeling more relieved ( I’m not dead!! ).  But still feeling bad about what’s happened.  Today I’ve been told by my GP that the panic attack was my body’s way of letting out the anxiety and depression that I’ve been bottling up, and that I need to start taking better care of myself or I’m heading for a breakdown and then what good would I be to me, or anyone?  Then how bad would I feel?