Tag: care

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.

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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?

A small “c” change.

Tomorrow marks a start of a big change.  My wife has been granted what’s known as “recreational care” sessions ( care – small “c” change – get it?? Oh never mind… ).  These are intended to give me respite from caring for a few hours at a time, letting someone else take charge for that short time.  Two afternoons, twice a week.  For now.  It’ll also give us small breaks from each other.  I mean, with the best will in the world, being together 24 hours a day is pretty soul destroying for us both.  Not to mention very dangerous for our marriage.  As I’ve written before, it feels like being married to the disease and not the person – such is its domination over our lives.

This means I can get some rest or more sleep.  I can paint or listen to music or read a book.  I can have a relaxing bath or get some exercise.  But, knowing me, I’ll most likely do the usual, banal stuff and endlessly tweet about it!!!  Anyhow, I’m free two afternoons a week for coffee, tea, small excursions, etc.  Any ideas???

Oooops? Seriously?

Despite the adverts that endeavour to make the subject of bladder incontinence acceptable, it’s not something you really want to contemplate having.  It’s still something that gets giggled about when you’re with your mates in the pub, among friends at school or on comedy programmes ( the Little Britain sketches were NOT empowering in any way ).  The adverts refer to “bladder leakage”.  But what if you go from having the first feelings of needing to pee, to completely emptying your bladder inside two or three minutes?  That’s a lot of pee.  And a lot of clothes to change.  And laundry to do.

Bladder incontinence is one of the more sensitive areas of MS.  My wife not only has the bladder sensitivity that I described above but can also get the feeling of needing to pee, yet nothing happens when she gets to the toilet ( fellas with prostate issues know what I’m talking about, right? ).  Let me describe what it takes to get my wife to the toilet.  When we’re at home she sits in a reclinable chair so that helps in getting her upright but I have to lift her off the chair ( she can’t bear any weight on her legs ) and on to the wheelchair.  I’ll wheel her to the bathroom where I have to lift her again to an upright position, turn her round – while holding her up with one arm, pull her trousers and incontinence pants down and set her on the toilet.  All the while battling against powerful leg spasms that she can neither feel nor control ( damned lesions and nerve damage ).  No mean feat!  All this is done in reverse order to get her off the toilet, back on the wheelchair and back to the reclining chair in the front room.  Each visit to the toilet requires me to lift her completely off the ground four times.

My wife weighs 45kgs ( give or take the odd biscuit or two ) and even at this light weight, taking her to the toilet is a fucking ordeal.  Especially when you’re out somewhere and the bladder emptying strikes!  Yesterday was a bit of an ordeal.  Because my wife had a “feels-like-going-to-the-toilet-but-doesn’t-actually-go-much” day.  She had to go to the toilet nine times.  And at four lifts or “hoists” per visit, that’s 36 lifts to go to the toilet.  Added to that 8 lifts first thing in morning to get her out of bed, showered and dressed, and 6 more at night to get her ready for, and into bed; I lifted her at least 50 times yesterday.  Probably 10 – 16 more than usual.  No wonder I’m knackered.  I get cranky as hell about it.  We both get frustrated about the whole deal and tears were shed.  At least they were by me.

If I were in a humorous mood, I’d title this post “Bladder incontinence – takes the piss” or something equally drôle.  But I’m not.  I’m just tired and fed up.  We both are.

What do I do to keep myself from clawing the walls? ( other than the internet ) I paint.  I mean I like to try to paint.  On canvas, I’m not a decorator.  The picture above is an example.  The first picture I posted on here is another.  I’m no Picasso or Miro but I enjoy doing it.

Time constraints of being a carer means that I’m not quick but I start with what image is in my head and I’ll carry on until the picture matches it.  No matter how long it takes to complete.