I’m finding it hard to write this without making someone else’s grief about things here.  I know it’s not right but I hope they’ll forgive me, and that anyone reading this will understand why I feel this way.

Last week, we said goodbye to a friend – S.  S was only 32, and had fought MS for half her life.  I know her family more than I knew her.  They cared for her throughout her battle with progressive MS and were with her at the end.  To say that her passing was a shock is an understatement.  Like many diseases of this nature, MS didn’t provide the final blow.  That was left to pneumonia – a dangerous threat on its own, without having a compromised immune system.

I saw S twice in the three weeks before her passing.  First, when I took MW to look round a respite home, she was a resident for that particular week while her parents took a break.  She was asleep in front of the TV in the home’s common room.  She looked peaceful, relaxed, and rested.  And well cared for.  The home’s very good and seeing S so relaxed helped put MW’s mind at ease about staying there.  That’s important for any respite break – but I digress.

The second time was the day before she left.  In a hospital side room, in a scene that could have come from any TV show or film.  Machinery, tubes, cables – I’m sure you’ve seen something similar, either on a screen or in real life.  Her mother had told me a few days before that she was in hospital and was extremely poorly.  We visited her while MW was in hospital for an appointment.  Spent a little of what we now know was precious time with her.  S had been given some glass butterflies.  Her mother gave one to MW while S had another in her hand.  They were linked.  Like two wings of the same butterfly, I guess.

The MS that S battled was similar to that which MW has.  She was the only person I know or know of in a similar position.  I know what her family had to do on a daily basis.  Which is why I wished with every fibre that S would recover.  That life wouldn’t be so cruel to someone so young who didn’t deserve to leave so early, or to a family who shouldn’t have to face the prospect of losing a daughter or a sister in her prime.  I also know that S didn’t deserve to suffer as she did, nor did her family who saw the effects every day.  She’s no longer suffering or in pain.

I’m no altruist in this regard.  It didn’t take long for her family to realise what was going to happen.  But I wished and willed S to recover, partly for selfish reasons.  Not to prolong any suffering but for reasons of hope.  Because her passing plays on my fears of inevitability.  Of a taboo subject and thoughts that we can’t – daren’t – articulate.

Meanwhile, we fondly remember a beautiful butterfly who has now spread her wings.  And, if the music at her funeral is anything to go by, is head-banging to her heart’s content.

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.

Missing the bigger picture.

I’ve written before that, because I’m with MW pretty much all of the time, I tend not to recognise the major changes in her until there’s a catalyst event to make it obvious to me.  By major changes, I mean things like no longer being able to walk, needing to be fed, moving from being singly to doubly incontinent, etc.  This isn’t an exhaustive list but I hope you get what I mean.

MW had been pencilled in for an electric wheelchair test in early 2014.  That had to be continually postponed because she was confined to bed with a horrific pressure sore.  The sore has healed to the point where the test could go ahead.  MW was using the prospect of an electric wheelchair as something to look forward to whilst in bed.  So, this March, we went along to the test centre.  MW couldn’t use any of the demonstration chairs as there were none with enough body/head support.  The Occupational Therapist (OT) asked questions and took notes on MW’s condition, symptoms, and (dis)abilities, while the rep from the chair supplier talked to us (that is, to me) about the chair’s capabilities.

During these conversations, it became apparent that MW now has serious issues with arm movement.  She has practically zero movement in her right arm – thus couldn’t control an electric wheelchair with this hand.  She has slightly more movement in her left arm but, again, it’s severely limited.  I don’t think MW could control an electric wheelchair.  The supplier rep showed me the attendant control and took me through a test, which I went along with.  However, I couldn’t help but think it was pointless.  If MW can’t use an electric wheelchair independently, it becomes a useless exercise.  The possibility of some independence is the whole point of using an electric wheelchair, isn’t it?  A further test would take place in 12 weeks with a properly supported chair.

A couple of weeks ago, the chair was delivered and we had the second trial.  The controls were moved, I lifted MW into the chair, and the supports were adjusted.  The trial was on.  Only, MW’s left arm wasn’t going to be up to the task.  We got it to reach the control but all that happened was that her arm clenched (due to spasm) and pulled the control to the right, moving the chair in a circle.  There were some looks shared between the OT (a different OT, this time), the (same) supplier rep, and me.  We all knew the truth of the situation – that MW was past the stage where an electric wheelchair would be suitable – but who was going to be the one to say anything?  The OT gave an option for moving the controls to a more central position and suggested a further trial.  Fair enough.  Might as well exhaust everything before acknowledging the inevitable.

I haven’t actually got a point to this, other than realising that MW can’t move her arms at all any more.  She can no longer hug me as her arms are usually crossed in front of her torso- all hugs are one way affairs.  As I say, it takes a catalyst event for me to realise the extent of changes to MW’s body and abilities.  And not only for me.  MW’s been pretty quiet since this second wheelchair test.  I ask if she’s OK or if anything’s wrong, and all I get is a reflex response of “Yes, I’m fine.  Are you alright?”.  Which doesn’t help.

Her quietness could also be a result of getting sick of me refusing to believe her when she tells me there are ‘creatures’ that cause her pain in various areas of her pelvic region.  There are no creatures.  This is ‘formication’ or ‘parasthesia’ – call it what you will – and, according to the MS specialist nurse, “there’s nothing we can do”.  I’m going to wait until the neurologist appointment later this month to confirm that.

Or her quietness could just be due to the summer.  The heat is making her lethargic and wanting to sleep more.  What I do know is that we’re both realising that she’s losing more and more of herself to MS.  We expect this.  Nevertheless, you get so caught up in micro-managing the symptoms that the effects of the disease get missed, and it needs a prompt to realise just what the full picture is.


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.


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.


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.


Well, the last half an hour has just freaked me the fuck out.  MW is currently in bed.  I went in to check that she was alright before making a night-time drink.  She said, “Don’t think I’m stupid but what would you say if I said I told you I’d been talking to your Dad?  And that he’s all around us?”.  My Dad’s been dead for ten years now.  She grabbed my hand and said that he would have to “show himself”.  She continued to talk to thin air for a minute or two.  I had no idea what to say or how to react.

MW has NEVER shown any interest in the occult or in mediums.  The opposite is true, she was always very sceptical about it.  I remember she once went to see a fortune teller as part of a group but her demeanour towards it was very sceptical.  I know people change over time but this is the first time she’s behaved like this.  It’s really scaring me.  Not the subject matter, I don’t suddenly believe she’s developed a ‘gift’.  I assume she’s either reacting to her medication, or her lesions are affecting whichever part of her brain is responsible for hallucinations and other related symptoms.

We celebrated our tenth wedding anniversary on Sunday.  I look at how she was then, and compare that with how she is today.  It’s frightening, and very upsetting.  Tonight’s incident is another in a long list of examples of how MS has changed her.  I’m scared.  I’m scared of losing her completely.  I’m scared of the future.  And I’m tired of being scared.


MW has taken to having a stuffed toy dog lying on the bed next to her.  This is a substitute of sorts, for a real dog.  She’s wanted a dog for a while but I’m uncertain.  Not because I don’t like dogs or anything, quite the opposite.  It’s just that I know I’ll be the one that would have to look after a dog.  Do the walking, cleaning up, training, etc.  I feel selfish writing that.  I know that MW loves dogs and has had one before.  But that was long before MS.  She’s still confined to bed for long periods because of this bastard pressure sore, so everything is sort of on hold anyway until she’s able to be got up and seated in her chair for longer periods.  I know I shouldn’t try and psychoanalyse her from a distance but when I see her with this toy dog, I can’t help myself.  I’ve known MW for 14 years now and this is new to me.  Does she see a dog as a surrogate child?  We don’t have a family, and I’d understand how a pet would act as that surrogate, no matter how clichéd that seems.  Or does she feel starved of affection?  Is it something I’m doing wrong?  I try to ensure that I do show her affection because, after all, she is still my wife.  Her having MS is not her doing and I do love her, even if our relationship stretches the definition of a typical husband/wife marriage to its very limit.

There are things I don’t even put in the blog because they’re too personal but I will say that this disease has robbed us of almost every ingredient that you’d expect to find in a marriage.  I’d expand on what’s been lost and how I feel about it but that’s not what this post is about.  Maybe I’m not ready to write about some things just yet.

My point is that seeing MW with this dog is a shock.  She’s never been one for large amounts of cuddly toys.  When we met, she even described herself as being a bit of a cold fish.  This latest example of change in her is the complete antithesis of the woman I met and married.  It feels like she’s undergoing (or undergone) an infantilisation of sorts.  I feel more and more like a parent than I am a husband.  Yet, my immediate response to seeing this change is guilt.  Am I responsible for her behaviour through the way I’ve acted and reacted to all the challenges her MS has presented?  Could I/should I have acted differently as a carer?  Would this change have happened anyway as a result of the increased lesions on her brain?  She already shows symptoms of altered cognitive and memory states, including hallucinations, so it wouldn’t be beyond the realms of possibility.  I don’t treat her like a child.  One or two of the carers do occasionally and it grates on me because the MW I know, the MW I married, would have *hated* that.  However, she seems to tolerate it – no, more than tolerate, she seems to enjoy it.  I don’t say anything because, if she does enjoy it, who am I to jump in and berate them for it?  I keep expecting the old MW to pull them up on it.  But she doesn’t.

I know I get wound up by the worry of all the things that have happened to her.  I can’t help but show that by my reactions to things like her choking, or when she sleeps so heavily, it takes some effort to wake her up.  I keep saying this but I am doing my best.  I haven’t got a manual to follow or anything.  I keep telling myself that the dog is a child surrogate.  But only because that stops me from going into a spiral of self reprimand alternated with guilt.  It’s a valid enough reason and I can buy it.  Hell, I can even share the feeling.

None of this is made any easier by the news I received over the last week of two MS sufferers I knew – rather, one I spoke to on Twitter, the other I knew of through his wife and carer.  Both of them passed away during the latter end of 2014, one on Christmas Eve – both of them shocks.  I’ve not told MW about them because of her being around the same age as they were.  She’s already concerned about her age and what MS has done to her by this age.  I don’t want to add to that by giving her this news.  Besides, she didn’t really know them, only through things I’d said.  Meanwhile, I see any change in her as being something else to mourn.  I try harder than anything to keep it hidden but I can’t help but be scared of what will happen next.  Am I looking at a finite amount of time with her?  Because I have no idea how to start to cope with it if it’s true.  And I don’t think a dog would make it easier.

The blues.

I keep saying that this account is a means for me to occasionally rid my head of all the shite that infests it.  But what if the shite in my head isn’t really coherent?  Or just plain fucking miserable?  Do I self censor?  Keep quiet?  Or just say ‘fuck it’ and let go, come what may?

I’ve spent most of this past weekend either in bits or moping.  It’s hit me that MW is now fecally incontinent.  In reality, I’ve known this for a few months but I figured that instances of it were just anomalies that could be explained and it would all right itself in time.  No.  They weren’t.  It won’t.  There have also been moments where MW has displayed symptoms that I imagine have parallels with Alzheimer’s disease.  An insistence that something exists where it doesn’t.  A memory that seems vivid but has no basis in reality.  Disagreements follow.  Tears.  Reassurances.  More tears.

Imagine a grieving process that is like death by a thousand cuts.  This is how I feel.  Like the life I once had, and the life I thought would be a given, is being taken away very slowly, one cut at a time.  That MW is being taken away one piece at a time.  And it hurts like fuck.  There’s always something new/different to grieve and I don’t know how to deal with it.  I wouldn’t know where to start, or if I have the right to ask anyone to listen to me try.  Would I if my circumstances were reversed with someone else?  I don’t know.  I like to think so but we all would like to think so.  The net result is isolation.  Loneliness.

“Are you alright?”

“Well, it’s like this… [opens hitherto well-barriered floodgates of emotions and experiences.  Watches enquirer’s expression alter irrevocably.]  erm…so, anyway, how are you?”

It’s like a very long blues song. And that’s a lot to shove on to someone.  I don’t know if I can, or should, do it.