Beauty in Small Things

As most of you are aware, I am a nature lover. Years ago, before I got sick, for almost a decade, I was a year-round wilderness guide/outdoor educator spending much of my year outdoors exploring and travelling wilderness areas. Then one summer I got mononucleosis and never recovered.  While I was diagnosed with M.E./CFS just 7 months later, I also likely had POTS from the get-go, a form of orthostatic intolerance. I was only recently diagnosed officially with POTS.

My point? Like many of us with M.E., the disease is severe enough we lose much of our lives and are more often than not, no longer able to work.  I lost my home, job, almost all my hobbies, and because I had to move, my social life and even some of my friends.

This was 15 years ago now.  However, despite years of usually being home-bound and often bed or couch-bound, I'm still a nature/outdoors lover.  I explore the outdoors in my memory, imagination, through my art, and through the window. On occasion I'm lucky enough to get out to local 'wild' areas.  I  live in a pretty amazing spot nature-wise - the nearest large city over 300 KM away - here we are surrounded by lakes, forest, rock etc.

We also have cold long winters. When I was a winter guide/instructor I loved winter.  Compared to summer, the wilderness areas were almost empty of humans.  There is a beauty in the boreal winter that is hard to describe - the sound of the snow beneath your boots or skis, the stories left by wildlife through fresh animal tracks, the purple-blue skies and sunsets.  (Not to mention we got to travel with sled dogs).

Unfortunately, I don't enjoy or appreciate winter like I once did.  My house is poorly insulated and draughty.  People with M.E and POTS have trouble with temperature control (due to dysautonomia or autonomic dysfunction) and so in winter I'm almost never warm despite always wearing long underwear, multiple layers, and a hat or hoody even indoors.

Despite living fairly north for much of my life (north is relative), the other morning I woke up to a surprise. The trees, fences and plants were covered in hoar frost.  It's frost that forms right from water vapour (gas to solid) when it's quite cold but also misty or foggy.  I walked all around the yard taking photos and I even drove to a nearby park to take a few shots.  I was awestruck. This was a magical experience, the frost was just beautiful.

This is beautiful on several levels.

I just thought for those who hadn't seen this you might appreciate it.  It's beautifully written and resonated with me big time:

https://mobile.nytimes.com/2018/01/10/opinion/in-my-chronic-illness-i-found-a-deeper-meaning.html?referer=android-app%3A%2F%2Fcom.google.android.googlequicksearchbox

Update

I don't feel as if I have much to say, but nonetheless, it's time for an update.  Christmas passed quite uneventfully.  We had a dinner here on Boxing Day that was celebratory but fairly low-key (we had my dad over).  Then of course I was crashed the next day.

New Years eve was awesome.  A friend came up from Minnesota and while we didn't do anything too crazy that night (watched a movie, drank some port, ate a light dinner and yummy snacks) it was such a pleasant night. Believe it or not, I was AWAKE at midnight! I can't remember this happening on a New Years since I got ill! Part of the reason why is that I wasn't crashed that day so I didn't feel the constant desperate need to retreat to my bed.

So while I don't think it behooves those who are ill to be too goal oriented (leads to disappointment after disappointment), I will list things I am happy I did in 2017:

• Believe it or not, I worked part-time (10-25 hrs a week) from home 10 months of 2017 (actually probably closer to 8, but I was officially employed during 10 months).
• I went to the Slate Is. and camped with friends for 4 nights. 
• I spent two more nights in October solo (with the dog) in the woods on a beautiful lake.
• I managed my dad's care, finances, health, and issues including loss of his licence.
• With lots of help, we repaired a section of the house's foundation during the summer - it was mostly quite fun.
• I spent a week with friends in Duluth. 
• After 15 years I officially got a diagnosis of POTS including travelling for the tilt table testing.
• I didn't have any significant relapses (although I did have a 6 week bad patch last winter).

So, really that is an amazing amount of stuff done despite the fact that I remain in bed or laying on the couch all but about 3 hours of most days.  (I work from bed online).

On the negative:

• At times, the trying to work while ill (enduring lots of sickness stuff) was beyond anxiety making, I experienced high levels of anxiety and stress in 2017.
• I endured patches of brain fog similar to when I first got ill.
• I mostly had to give up my one 'out of the house' activity because working sucked me dry energy and health-wise.
• Similarly I wasn't able to do much printmaking as work, my dad, and recovery from these two was all I could manage.
• I lost my closest aunt.

So we are two weeks into January and I am laying in bed doing pretty much nothing useful.  I feel divided about not working (probably til July).  Part of me feels a wave of relief every day I wake up (and given I'm pretty flared this week this relief is doubled). 

Unfortunately, this feeling is then often  followed by guilt - that I should be "doing something useful" with my limited energy.  Oh course I try to tell myself that rest and recovery is useful.

It's funny because when I'm in a crash or relapse I think/feel, "How can I possibly endure another day of this?!! How could I have been so stupid to --- e.g. do that errand, visit my dad, walk a block, etc.?".  But even a day after pulling out of a crash I flip and tell myself, "You really can manage more, don't be so lazy, so negative, it really isn't that bad, you only have a mild case of M.E. etc.".

Just for fun, here's a photo of my dad (and me) beside an old icebreaker (it was hard to get the whole boat into the photo) - he loves to ship watch.