Feeding: a habit

No screed of a post this time, just me emptying my head into the void.

MW and I would usually join our old branch of the MS Society for their Christmas dinner.  Not this year.  As MW now needs to be fed more often, we’ve decided not to go.  We both know that there will be other MS sufferers there who have to be fed but we’ll still not go.  It’s one thing to have to have to be spoon-fed at home, it’s another to do it in front of 100-120 other people.  It’s about dignity, I guess.

MW also has another pressure sore.  What you may not know is that not only is a pressure sore very difficult to heal (a previous one took 5-6 months to fully heal) but skin breaks exacerbate other MS symptoms.  We suspect it came from a blister caused by the hoist sling.

It’s odd how such small, innocuous things cause major problems.

Life’s hard.

I’ve not blogged for a while as I’ve been moving house and crashing the car.  In the same week.  No injuries though and MW wasn’t in the car at the time.  Maybe I’ll explain more in a future post – this post is really meant to keep the blog ticking over.

The new house is an adapted bungalow with the facilities MW needs to live day-to-day.  It’s very good and we’re just getting to grips with everything it has to offer.

I now live in a community that has a few residents with disabilities.  My immediate neighbour is a man who suffered a stroke and is now reliant on his wife to care for him.  He uses an electric wheelchair to get about.  He can’t be more than 5 years older than me.

Another neighbour, who’s lived here for 10 years or so, had an accident.  I say accident, he was pushed off a bridge onto concrete.  He broke just about everything and was in a coma for 9 months.  He told me that he’s still determined to walk.  He, too, uses an electric wheelchair to transport himself around and I’d say he’s younger than me.

There’s no inspirational motive for this post – no ‘moral to this story’.  I merely observe that life’s bastard hard on some people.

First foot.

Threshold.  I’ve heard or seen this word a few times this week.  It’s New Year and my Mother belongs to a generation for whom the tradition of ‘first footing’ is still alive – crossing the threshold with items to bring good luck for the year ahead.  

The same word cropped up in a couple of other conversations over Christmas/New Year.  I was talking about MW’s condition with friends who I’ve not seen or spoken to for a while.  It struck me that a progressive condition like MS* can be looked at as a series of thresholds that have been crossed.  That is, each new symptoms felt or each lost ability to do something independently is viewed as a threshold crossed.  Or, in the most recent case: each new, more powerful medication required to alleviate the effects of symptoms on her body.

This year has already seen MW cross another threshold.  The neuropathic pain she feels has been so bad that she’s exhausted what the specialist nurse considers her first line of attack for pain relief, i.e. a combination of tramadol and pregabalin.  MW has now been prescribed buprenorphine patches – a very strong opioid analgesic.  In essence – morphine.

To me, morphine brings with it connotations of palliative care.  Not the kind of phrase that instils positivity, despite the fact that palliative care is something that is intended to help pain relief in a wide range of chronic conditions, not just those towards end of life.  The morphine is helping but the pain is tolerable rather than eradicated.  No-one’s actually said as such but the demeanours of both the nurse and GP, and the way the drug is handled by pharmacists, tell me that this is a fairly major development in MW’s condition and medication history.

Other “thresholds” have been crossed in the last few weeks.  MW is suffering more from weakness and tremor in her hands/arms.  Increasingly, there are times where she can’t hold/control cutlery and cups – particularly when tired – and I have to feed food and liquids to her.  I also have to “feed” meeds to her as she can’t hold and control anything as small as each tablet she has to take.  And MW’s inability to move is causing new pressure sores on her legs/feet.  Inflatable “boots” have been ordered to try and alleviate them thanks to a fortuitous surprise visit from a district nurse.

So, we first foot into another year of MS.  With a bit of luck there won’t be too many thresholds to cross during the year ahead.  

*Disclaimer:  Yes, I know that MS isn’t an automatically progressive condition but this blog pertains to MW’s condition which *is* progressive.  Why didn’t I clarify it?  I am doing.  This is the clarification!

From zimmer, to glimmer, to…?

“Will I ever walk again?”

“I don’t know.”, I said, with an expression somewhere between pain and pity.

Now, we both know the answer to this question.  No.  MW won’t walk again.

Three things tell me that.

1.  MW hasn’t been able to walk for the best part of two years.

2.  MW cannot stand, cannot bear weight on her feet.  One of the basic things we take for granted as people.

3.  MW has had no feeling in her feet for months, and has trouble moving them independently.

And yet I was compelled to say “I don’t know”.  To offer a tiny glimmer of hope despite the glaringly obvious staring at us both.  I couldn’t say it.  I couldn’t say, “no”, and take that tiny glimmer away for good.

What would you have said?