Spread the Word



Please help those of us with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis spread awareness about our illness.  It’s real and it destroys lives.   I am only mildly to moderately affected, and it has changed my life so profoundly.  Those who are severely affected spend their lives in bed, unable to do the simplest tasks for themselves.  The exact cause is still unknown and there is no cure.


The Winter of My Discontent

Hello blog friends.  The absent one has returned at long last.  The writing muscles are a tad out of shape, but the words are banging around in my head, begging to come out, so let’s see what happens.   The headphones are feeding me some lovely tunes, a fresh cup of tea is working its magic, I’ve enlarged the text a tad (quit forgetting to make an appointment with the optometrist, woman!), and off we go.

I tried to write a post several times over the past months, but trashed each effort before I hit publish.  Spilling the really intimate details of my life all over the internet has never been my thing, nor has been the writing of deliberately vague posts.  So, I decided that it was best to just stay quiet until I got things sorted out.   I still don’t want to say very much at this point, but I’ll discuss it when the time is right.  For now I will say that I’ve made some really tough decisions, big changes are happening, and they will continue to happen over the next while.  It’s terrifying in some ways, but also very exciting.  I’ve chosen happiness, at long last.  Not the happiness of everyone around me, but my own happiness.  Not choosing it a long time ago has cost me dearly, and I’m not willing to give any more.    When you get to the point where you look in the mirror and you barely recognize the person looking back at you, life needs to change.   Life isn’t about being a martyr, or keeping up appearances.  There are enough actresses on the stage and screen, so I’ll leave the Oscar-worthy performances to them now.   When your heart says, “enough”, you need to listen, and you need to act.

I knew that things had to change late last year, but a health scare in January was the final straw.  It had all of the classic characteristics of a heart attack, but fortunately turned out to be just complete exhaustion.  I knew that I had been overdoing it, but there was no other option.  Or so I thought.  As I lay on a stretcher in the hospital, having a load of tests done throughout the night,  I finally saw the light.  Not the white light, thank goodness, but the one that makes you wake up and give yourself a mighty shake.  If it had been a heart attack and my life had ended that night, what a massive waste it would have been.   I have things to do, dreams to fulfill, and adventures to experience, so what am I waiting for?  We only get one chance at life.

Having a chronic illness does make life a bit harder, but it’s just an inconvenience, not a reason to give up the things that really matter.  Since that night, I’ve treated the CFS with the respect that  it deserves, and there has been a noticeable difference.  Feeling happier in general, and being optimistic and excited about the future,  have definitely helped me feel better, too.  The past few weeks haven’t been as great, with the pain level reaching new heights, but the weather has been pretty awful and I’m not sleeping well.   Pain interferes with sleep, and fatigue ramps up the pain, so it’s a bit of a vicious cycle.  I could go on medication again for the pain and sleep issue, but I just finished losing forty pounds, and I’d rather not regain the thirty that were due to the medication.  I’m tired enough without hauling all of that extra weight around again.  It’s also nice to look in the mirror and not be horrified.    The new wardrobe boosts the spirits, too.   I’ll never love shopping, but having to buy new clothes for the right reason definitely makes it more fun!

Huge thanks to my daughter for doing a major overhaul on my blog design.  I’m sorry that it went to waste for a few months, but I’m back now and I’ll make good use of it.    I would have never chosen that profile photo, or the one on my About page, but they’re staying.     My archives were in need of some sorting out before, but the design changes really made a mess of them.  So I’ll have a look at them and decide whether or not they’re worth trying to salvage.  I have them saved elsewhere, so they won’t be lost if I delete them here.   The photos that matter are on my Flickr account, which I will add back to the sidebar.

If anyone is still out there, thank you for hanging around.  If you’re just discovering my blog with this entry, welcome, and please come back.  I’ll do my best to make it worth your while.  🙂

A Visit from Jack


Jack Frost
by Helen Bayley Davis

Someone painted pictures on my
Windowpane last night —
Willow trees with trailing boughs
And flowers, frosty white,

And lovely crystal butterflies;
But when the morning sun
Touched them with its golden beams,
They vanished one by one.

Old Man Winter roared into town with a generous gift of snow over the weekend, and it looks like he’s here to stay this time.  Which suits me just fine.  I’ve always preferred winter’s cold over summer’s heat, but have come to enjoy it even more since the onset of ME/CFS.  My heat tolerance is extremely low, but cold remains positively invigourating.  I’ll take invigourating any way I can get it these days!  The pain factor does go up several notches during the winter, but feeling less limp and muzzy-headed more than makes up for that.

Jack Frost also paid us a visit in recent days, and Alex captured some lovely frost patterns on her bedroom window, including the photo above.  Her window doesn’t usually frost up like that, so our old house must have shifted a bit again over the summer, creating a tiny opening somewhere around the frame.  The even older farmhouse in which I grew up had frosty windows galore, so one of my favourite childhood pastimes was to go from window to window, seeing what fantastical images were hiding in the frost patterns.    Living in isolation in the country tends to cultivate a very active imagination, so Jack Frost’s artistry kept me well entertained when it was too cold to play outside.

Autumn will always be my favourite season, but I also love the stark beauty of our winter landscapes.  We’re blessed with an abundance of winter sunshine in this part of the world and nothing is more beautiful than a fresh fall of snow, sparkling in the bright sunshine, with a brilliant blue winter sky overhead.   Nobody in foreign climes believes me when I say that being outside on a sunny -20C. day can feel absolutely wonderful, but it really and truly is quite splendid.  Bracing, but splendid.   -30 and lower, not so much, but even a deep freeze is tolerable if you’re bundled up enough and walking at a brisk pace!  Winter driving has never been one of my favourite activities, but winter walking is definitely on my favourites list.  Maybe it’s genetic imprinting from my pioneer ancestors, but there’s something exhilarating about bundling up and facing the elements head on.  I’ve been far too much of a houseplant over the past several years, so am hoping that I can experience regular doses of winter’s splendour over the next four or five months.