Filling the Days

A friend sent me a message yesterday to ask if I could offer any tips on “the craft of keeping to a routine and filling your days whilst maintaining good well-being in all its forms” during this difficult time. I presume her reason for asking me is that in March 2007 I found myself in a form of lockdown.

I went to work on a Friday morning (blaming the unusually bitter spring weather for the cold numbness that had crept into my toes) and by the wee small hours of the following Monday I was in the emergency receiving ward of our local hospital having lost the feeling from my toes to my thighs. I wouldn’t return to work until June and, even then, I was only allowed to do so in a phased return (three hours a day on Tuesdays and Thursdays).

The reason for this turn of events was an episode of transverse myelitis (TM). TM is a disorder caused by inflammation of the spinal cord. There are four classic symptoms:

  • weakness in the arms/legs
  • sensory symptoms such as numbness or tingling
  • pain and discomfort
  • bladder dysfunction and/or bowel motility problems

TM can also be an early symptom of multiple sclerosis, which is what I was diagnosed with in the May of that year. By this time the numbness and altered sensation was not only affecting my feet and legs but my torso, arms and hands as well.

I had to adjust to a long period of bedrest and the disruption this confinement would wreak on my previously busy life (as a secondary school teacher with a husband and two dogs). Bearing in mind this happened thirteen years ago, my options were a bit more limited.

  1. I began to fill the days by playing solitaire on my laptop. Game after game after game. I played solitaire so often I figured out how to cheat against myself, just to mix things up a bit.
  2. After hundreds of these games, I started to write poetry. My intention was not to produce publishable work, it was just to write because, as someone who is a bit obsessed with words and language, I found that it was an excellent way to distract myself from both the discomfort and the long hours spent alone.
  3. A friend of a friend did a genius thing. A kind thing. She dropped off a stack of DVDs. There were loads of them. All contained tv detective programmes that were new to me – most were from other countries. I binge watched episode after episode on my laptop before I learned that it’s sensible to ration the good stuff.
  4. My husband loves to cook, but up until this point I had pretty much taken for granted the pleasure of eating a really nice meal. That stopped. I began to savour each bite of every meal that was brought to me by tray. This also allowed me to help my husband who was finding it difficult (as an engineer) that he couldn’t fix me or the situation. He wanted to help and his cooking became a tonic for both of us.
  5. I allowed myself to become curious about the way the texture of time had changed. Its passing was somehow different and I chose just to hold the thought rather than worry about what it meant.
  6. On a daily basis I reminded myself that this bedrest and the isolation it inevitably brought was for the best. It was helping my immune system to calm down and my body to recover. It would allow me to be able to go outside again, maybe not in the next day or week, but eventually.
  7. I made plans for things I wanted to do when I was able to return to “normal life”: join a poetry class; take up knitting; climb Ben Lomond for the fourth time.
  8. I also did some unhelpful things, like ordering a miracle cream for nerve pain off the internet and reading too much (and too indiscriminately) about the disease with which I’d just been diagnosed. However, this did teach me the difference between helpful and unhelpful activities, so I’m taking it as a win.

As friends and family will know, I’m a bit obsessed with numbers. I like even ones, particularly anything with an eight in it. It therefore seems appropriate to stop my list here. I hope there are things that could be extrapolated from it that might prove useful. Maybe drop off a nice meal or a stack of great DVDs to someone who’s self-isolating; allow yourself to be distracted by something you enjoy: reading, writing, knitting, drawing; don’t buy anything described as a miracle off the internet.

 

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Hello 2019

Part one

I’m not the resolution sort and yet January seems to have brought with it a desire to drink more water and less wine; to get down to the part of my DFA (Doctor of Fine Arts) project that frightens me most and to be more faithful to this place (it being over four years since my last post). I don’t really want to be held to any of these – except perhaps the one about getting down to the scary bit of the doctorate – but I plan to have a go at each.

My first reflection of 2019 is that I think I should perhaps question the name of this virtual writing place/space: sunshinescot.com. It may have been apt when I was a Scottish person living in Florida but only the Scot part holds true on a snowy afternoon in Wisconsin. It has to be said, however, that one person’s minus-six-celsius-icebox is a non-human animal’s sunny-sunny-day; a large flat coated retriever called Hamish is currently slapping his paw on the kitchen door in the hope that I’ll let him out to play, again. I have tried to remind him that the white, fluffy stuff he loves so much will likely continue to thickly carpet the garden until at least the end of April. He is, however, unappeased. His whimpering has now grown to a bark, which is my cue to stop typing and don hat, scarf, gloves and boots. Again.

Part two

snow 4

Master of all (the snow) he surveys.

 

snow 5

The snow dance.

 

snow 1.jpeg

Our rascal of a rescue, Fergus, is only too happy to join in the winter fun.

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National Poetry Day

When I was first diagnosed, I found that writing poetry (in the loosest sense of the word) was a useful way to process some of the strange stuff that happens when you have a disease munching on your brain and spine. After a couple of years I stopped as the stories I wanted to tell began forming themselves in prose instead.

National Poetry Day got me thinking though and I returned to a poem that wrestles with a thought I continue to wrestle with: what happens in that infinitesimal moment when relapse turns to remission?

For those of us with Relapsing Remitting MS, there must be a split second – a moment in time – when a shift happens, a switch activates, and our bodies begin, slowly, to repair; that moment when our former ‘healthy self’ begins to return, to reassert.

A while back, when I was tussling with this thought, the following words started tumbling around in my head.

Lazarus

she returns
a summer lighter
a century wiser

I try
to spy deception
in tungsten eyes

she looks for clues
in mirrors
edged blue

orbiting
closer
we collide

ink-black
she glances
my skin

sinking
I stroke
my threadlike ghost

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A Letter A Day… Y

This is day 32 of ‘A Letter A Day’. The last day. It therefore seems fitting that I end on the first letter I received (although, when I chose to post the letters alphabetically I hadn’t joined those dots, so it’s merely serendipity). This letter is anonymous and if you click on the link below, I hope you’ll agree that it tells an important story, beautifully.

Y’s letter

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A Letter A Day… Travis

Today’s letter is from Travis who was diagnosed with MS at the age of 33. Please read his powerful diagnosis story by clicking on the link below.

Travis’s letter

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A Letter A Day… Sue

Since her diagnosis with MS sixteen years ago, Sue has become actively involved with the MS Society’s Research Network, working with the media and representing patients’ views on progress in MS research. Please click on the link below to read her powerful diagnosis story.

Sue’s letter

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A Letter A Day… Steve

With only three days left of ‘A Letter A Day’, it’s my privilege to post Steve’s letter. He was diagnosed with MS nine years after his wife, Caroline, had received the same diagnosis. Please click on the link below to read his diagnosis story.

Steve’s letter

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