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.

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