Tag: MS

My heart, laid bare.

(Warning: long read.  If you’re a TL;DR type, now’s your chance to quietly fuck off.)

I originally put a version of this post out in a quiet part of the internet that nobody ever sees, and certainly isn’t connected to this blog.  That’s because the subject is so personal – even a bit shameful – and I was scared that someone who knew me would read it.  I’ve become adept at keeping a bit of a shield between me and this blog.  I’ll occasionally link to here from Twitter but never the other way round.  It’s safer that way.

So, why am I posting this here now?  It’s not going to change anything, is it?  It’s that, frankly, I’ve had enough of hiding it.  Of holding it in and trying to swallow the hurt.  Because I’m hoping that catharsis will bring some kind of relief.  This is what you get told by counsellors, talk about it.  I can’t talk to MW about it.  I just can’t.  Primarily, the pain.  Secondly, MS has slowly taken, and continues to take, her mind and her memory.  Often, talking to her is like explaining things to a child.  Reason enough.  This would be a pain too far.

But I still feel this way.  I have cared for MW since her diagnosis over ten years ago.  This blog has gone a little way to allow me to express my feelings and thoughts.  You might argue that this post is long overdue.  You might be right.  I hope you understand why I’ve kept it to myself for so long.  Despite the fact that MW and I spend almost 24 hours a day together, I feel so, so lonely.

MW is predominantly immobile, can’t feed herself, can’t control her bodily functions, is partially blind; this disease has robbed her of almost everything.  This is pain enough for her.  To raise this subject with her would be too much.  She’d feel like what’s left of her world is being taken away.  I know I would.  I know she would, too.  You get to know this about a person.  The disease and its effects scare me and make me feel like I’m in permanent mourning.

However, I’m only 44.  I’m not so old as to be content being more a carer than a husband – despite the title of this blog.  I’m still a man, a human being.  I’m not a machine.  I still want…no, I still need real love, sex, intimacy, kisses, the touch of a woman who is in love with me as I with her.  A lovers’ relationship rather than one as carer and patient, brother and sister, father/daughter, the closest of friends, you choose which term is appropriate.  I still have fantasies.  Trust me, I’m no prude, I have an imagination.  I’m not easily shockable.  But those fantasies might as well be just a silent film in my head.  There’s no outlet.

So, what does someone in this position do?  Leave?  “Yeah, I know it’s not your fault.  I know you’re all vulnerable and stuff, and reliant on me, but I’ll be away now.  It’s not you, it’s me”  I know MW would be devastated to hear that.  No matter how ‘right’ that might be.  It would push her to do something stupid.  I know.  She told me once in an unrelated conversation.  Plus, what kind of arsehole would do that to someone so vulnerable?  This isn’t her fault.  She never wanted this shit in her life.  Neither of us did.  She can’t do anything about it.  How can I make her feel like less than a person?  It’s not fair.  There is still a love between us, even if it’s not the same kind of love as ten years ago.  That love has changed irrevocably.  I have my memories.  Memories of laughter, those glances between lovers, walking hand in hand, weekends cuddled up together.  I remember all those things.

But today, it’s all just history.  Memories that seem like the yellowing pages of an old storybook.  I know fine well that the same thing is happening to MW.  She misses the touch of a husband, of a man who loves her in a way that she wants to be loved.  Only it’s not possible now.  It’s not a psychosomatic thing, it’s no longer physically possible.  And neither of us can change anything.  No matter how much we want to.  What can I do?  Let me turn this around.  What would you do in this position?

Meanwhile, my tears are getting bigger.  Hidden, obviously.  Like I hide a lot of things.  Anyway, I’ve written it now.  Wade in to me if you want to.  Go for your life.  I don’t care anymore.  I can’t hold it in any longer.

We took MW to see her family again.  When I say ‘we’, I mean my Mum and I. It was MW’s Dad’s birthday while we were there.  He’s been fighting leukaemia for a while, now.  To tell you the truth, we’re surprised that his fight is still on-going.  We were given a prognosis for him that included a finite amount of time. Therefore, each celebration – birthday, Christmas, etc. – always carried the possibility of being his last.

This is not to say that MW didn’t enjoy seeing her Mum and brother, too.  She misses all of her family.  Her Mum does all the caring for her Dad, and can’t come to see us.

Although I may have said the same after the last visit, this may well be the last time we do this trip.  Five days’ of travelling and care with only the most basic of equipment have left their mark.  My Mum is in her late seventies and her health is deteriorating, too.  I can’t ask her to keep running around as my assistant whenever I get the urge to do this.

Also, I’m afraid that, as MW gets weaker and weaker, I won’t be able to lift her in the same way as I’ve been able to do.  As she’s losing core strength, I’m losing the ability to control each lift.  I don’t want there to be an accident that could be avoided.

It was good for them all to see each other.  There were a few tears, both on arrival and when leaving.  But, for five days, MW felt like she was part of her family again.  And I’m glad she did.

Where’s your head at?

I made tonight’s evening meal and brought it through to the bedroom, ready to feed MW (she spends 18+ hours a day in bed so, inevitably, some meals are taken in the bedroom).  As I walked into the room, I called MW’s name and told that her meal was ready.  No reply.  I called again, louder.  No reply.  MW was lying there, eyes closed, unresponsive.  No word of a lie, reader, I almost shit.  I thought the worst.

MW has MS.  A common symptom of MS is fatigue.  MW was merely asleep.

But that’s where my head’s at.  All the time.

One thing that MW is known for among her family, her friends, her carers, etc. is her hair. Despite being older than me, her hair is still naturally very dark. It’s one of the traits that leads people to believe that she’s younger than she is.

This morning, I’ve noticed she seems to have more grey hair than usual. I don’t know if the way the morning light was shining on her gave the impression of more grey or if it’s a real change. Either way, it seemed to make her appear more fragile. And she looks fragile enough without losing this last bit of her youthfulness.

Poignant

So, we’ve just been to see MW’s parents.  In particular, her Dad.  He’s been fighting leukaemia for the past couple of years and can’t get up to see her.  MW’s Mum looks after him as I do their daughter.  They’ve not seen each other for over 18 months.  I hope this is not the last time they see each other.  We don’t know whether MW’s Dad will take a sudden turn for the worse – as has happened before.  I do know that MW’s MS will deteriorate further.  She coped as best she could while we were away, with only me and my Mum to care for her, with no equipment, but there’s a limit to what she can endure.  It’s not easy for her to put up with 9/10 hour drives and not having the correct kit to keep her safe.

It was tough for her to endure and hard work to make happen.

But worth it.

image

The Fear

The Fear.  I hate The Fear.  I have The Fear now and I don’t know what to do about it.  More accurately, I don’t know what to do about what’s causing The Fear.  So, as famous people take to Twitter, I’m taking to Tumblr in a bid to make sense of it all in my head.  You can have a read, if you like.

MW is in hospital.  She was taken in on Friday with a temperature of 39.8, rapid breathing, and a lot of confusion.  The district nurse who saw her said she’d be better off in hospital where she could be given IV antibiotics.  Tests showed another UTI, and two patches of what appeared, to the doctor, like cellulitis (which is new to MW).  I’ve seen her in some states thanks to MS but this seems different.  She seems more distant, more disorientated.  As I’ve written before, MW has shown signs of dementia-like cognitive impairment – memory lapses, confusion, and so on.  I know that infections will exacerbate any pre-existing cognitive impairing.  It’s just that she seems so frail along with it.  I was feeding her a bun and a drink tonight and had to remind her to swallow.  She didn’t seem to know that I was trying to give her some food/drink, even though she’d agreed to have them.  I don’t know what part of this is due to the infection (presumably reversible with medication and care), what is caused by the MS (more damaging and potentially more permanent), or whether it’s a mixture of the two (and will that part caused by the temporary infection become a more permanent part of her MS).  Frustration leads to attempted rationalisation of what’s going on, which leads to The Fear.

MW was asking about her Mum coming to visit her, so I explained why she couldn’t.  We live at the opposite end of the country from her parents, but it’s mostly due to her Dad being ill and that her Mum cares for him.  This is not news to MW but tonight she seemed to get quite upset by it, which is very unlike her.  She normally understands the situation surrounding her Dad, yet it was as though she’d forgotten all about it.  I told her that her Dad’s very ill, which seemed to upset her.  I tried as best I could to put a positive slant on things, telling her that they’re doing their best and that they’re winning but she still looked quite teary.  I was telling her that she was winning too and that we’d get her right, and back home – trying to instil a spark of determination in her – which seemed to work.  In truth, I was trying to blink back my own tears.

Which brings me to The Fear.  I have the fear of losing her.  Not just in the sense of her not being the same person as she once was – mentally, I mean.  But also losing her physically, really losing her.  Dying.  A feeling not helped by the nurses performing ECGs on her due to a raised heart rate.  With it being Easter, and staffing levels being low, there was no doctor around tonight to ask for an opinion or to ask to expand on their reasoning behind the tests.  The nurses are asked to do the tests, not to evaluate the results and explain them to an anxious husband.  I came away from the hospital at end of visiting time feeling very uneasy.

So, I’m lying here at gone 2 a.m., watching fuck-knows-what on TV, trying to make sense of it all (getting more frustrated by the minute that I can’t contact the MS specialist nurse for another 36 hours at the earliest – thanks a bunch, Easter), and trying to keep The Fear away.  I know where The Fear leads if unchecked – panic attacks, anxiety, deep depression.  And I really have The Fear of The Fear.

Confession.

Forgive me, Tumblr, for I have sinned.  It’s been two months since my last post session.  And woe betide any Tumblr that isn’t updated regularly.

I’m not clearing the path for an announcement that I’ve suddenly had a conversion to faith.  I haven’t.  I’m a quiet atheist.  Which is to say, if you have a faith, good for you.  I don’t share it but I won’t have a dig at you about it.  I don’t believe in spirits, ghosts, fairies, etc. either.  Which is a good thing because MW has had more ‘sightings’ of things/beings that has unnerved me a bit.  Not in the sense of “what might there be in the house?” but in the sense of “what effect is MS having on her?”.  When you’re asked to “stop the dead people from moving me and picking at my sore”, it’s hard to know how to react.  I don’t want to make her feel stupid or humiliate her – these things are evidently very real to her.  But I can’t help her with what is plainly not there.  All I can do is reassure her that she’s not being moved, there’s no-one picking at her sore, and there’s no-one/nothing in the house that has any intent to harm her.  So far, she’s believed me.  What’s caused her to see these things?  I have no idea.  She does have a susceptibility to urinary tract infections, and she had one earlier this year.  But the frequency and repetitiveness of the sightings can’t be down to just that.  My next guess is that they are either side effects of the interstellar array of pain medication she’s taking or there are MS lesions affecting some part of her brain that is responsible for governing her perception of reality.  I had a chat with the MS nurse.  She reckons that side effects would be a likely explanation.  Right now, the benefits of the medication outweigh the risks of the side effects, so we carry on.

Other issues include: an overzealous care company employee who looked to impose a hospital bed on MW.  Apparently, the bed’s too high and is causing problems for one of the carers.  None of the carers had mentioned this to me, nor had they written about it in the daily log.  My insistence that current sleeping arrangements are more than adequate was met with, “I’ll have to take this to social services as a ‘safeguard’ issue”.  This sent me into a bit of a spin.  The idea that, out of the blue, someone can, de facto, impose a change on your living arrangements with little or no regard for how it would affect you is pretty frustrating.  I suggested a compromise but that was refused by said minion.  A compromise that was accepted following lengthy consultation with social services and an occupational therapy visit.  In future, I’ll be extra careful of the influence of care companies.

Right, I’m off to do my Tumblr penance.  Go in peace.