Plugging Along

It seems I rarely write here anymore.  I'm not sure why, maybe because I feel it serves little purpose, or perhaps now that I've recovered from the flu (took about 6 weeks) and am doing better I don't need the outlet?

Or perhaps because I'm not trying anything new and don't expect to any time soon (there really aren't any treatments for M.E and given research and testing take years, and funding remains abysmal, my guess is it will be at least another decade until treatment is available).

As for POTS drugs I've tried most of them now.  I can tolerate a very very low dose of beta blocker and it helps slightly.  It took 8-10 days of nearly unbearable symptoms to be able to tolerate this small dose (10mg) and given it (unfortunately) lowers my already low blood pressure I won't increase the dose. That said, I do find that it gives me a few hours where I'm a little less panicked standing up. So, I might be able to stand up for 6-8 minutes sometimes instead of 2-3 (or 30 sec) without terrible symptoms.  Like I say, it doesn't take it all away (not even close) but it takes the edge off - perhaps a 10% improvement for a few hours a day.

I am looking forward to spring and more time sitting outside and doing a little gardening.  Every time I try something even slightly physical I find I am surprised at how weak I am. This morning I went out and picked up some spruce cones in the garden and was dizzy and weak within seconds. It is beyond frustrating, there are really no words.  I've been living in the equivalent of an 80 yr old body since my early 30s and if I think about this too much I'm overwhelmed by the anger I feel to be so confined and limited.

I do have good things in my life nearly every day.  I am enjoying not working this semester and sometimes I even feel free of the shame and guilt of it (living off social assistance). I tell myself that it's not my fault I'm so ill and weak and it's not what I'd ever choose (so true).  I'm allowed a few moments of happiness on my good days.  Yesterday I went to a friend's for a 1/2 hour (she runs a rescue) and played with puppies. Two weeks ago I crashed myself to go to a local waterfall with my dad and see it before the ice went out (totally worth it).

I'm signed up to teach an online course in July and August so I've been working on getting that ready when I feel like it - I'm actually looking forward to it.

How are you all doing? Feel free to leave a comment. I hope you all are AWAP.

Slow Road to Recovery Post Flu

I'm finding that healing from influenza is a slow road.  It's been just about 3 weeks since I got sick, and exactly 2 weeks since the fever left, and I'm still coughing, weak, brain fogged, dizzy spells, depression, and exhausted.  My immune system seems to be taking it's time to return to 'normal' which is mildly immune compromised. I am improved, but not what I would call back to normal.

What am I doing? Mostly laying in bed or on the couch.  I'm so TV-ed out even though I generally keep it to evenings.  I am watching an extra hour or two a day which is just ick.  On the other hand I'm having problems reading as much as I usually do and I just can't sit or stand for very long so my options are limited.

I'm also back to seeing more of my dad, helping him with various tasks and of course the daily talks.  The 'outbreak' at his home is over so they have some activities again (exercise class, music groups etc.) which is really nice for him (and me).

I've been working on a print as a fundraiser for a while, and I finished it this week (see below).  It does disappoint to a degree (why do they never look how I hoped they would?).  I'm hoping to sell a few to help fund some dog events this summer (even though I'm not participating in dog stuff right now due to my health).  At the back of my mind, I guess I'm hoping spring brings improvement.

I'm also working on trying (again) to publish an academic paper about my research and I'm just not succeeding on this front either.  It was rejected by one journal last year and after some hefty edits I tried another journal. The second journal sent it back asking for major changes before I resubmit.  Being an academic in isolation, not ever attending conferences means I really have no colleagues to work with.  This is one of those times it would help to have another academic read and/or collaborate with.  That said, I haven't (quite) given up yet, I have a pile of recent papers in my field I'm working my way through in hopes that I can give it one last shot.

Travelling with M.E. and the Plague

Over family day weekend, I went to visit family (brother and his family including niece, 13yrs, and nephew, 12yrs).  It's been planned for 3 months or so.  It consisted of two shortish flights (no need to leave the plane between).  It was tough travel, but I made it okay, and the first day there mostly rested and hung out with the kids.

Day two we checked something off my bucket list and went to skate on the Rideau canal, the largest maintained natural skating rink in the world.  It was (obviously) a big day even with just the outing.  We rented a push sled so for the most part I just 'rode' in it.  However, I did rent skates and skated briefly a few times along the way (it's a 7km section of canal). It was fun to glide along although each time I got up my leg muscles became weak surprisingly fast.

One of my disabled brothers moved to the area a year ago so the next day we visited him.  I hadn't seen him since I moved my dad north in 2016 so it was great to visit him in person. I knew this was a bit crazy to "push" this hard (outings two days in a row), on the other hand I thought I'd have a few days to rest before my return flight.

That night I felt horrible and I woke the next morning with influenza (fever, severe aches and a cough).  I've been so so sick ever since.  Even with influenza I chose to fly home because I was so desperate for my own bed and a blackened room - quiet and rest.  I'm not sure what kept me upright for the travel - I was semi delirious with fever, but I made it.

The fever continued for 6 days!  By Friday morning it had finally dropped to a low grade one, but when I got out of bed Friday morning I was so lightheaded I thought I'd check my BP.  After putting the cuff on I (somewhat ironically) fainted!  I came to (uninjured) on the floor with the dog standing over me wagging her tail.

I've felt like such a wimp with this flu - I've just been so sick.  I still have a cough, am terribly weak, fatigued and brain fogged I can't imagine ever doing anything again - my suitcase and carry-on sit unpacked by the door.  My brother got the plague the day I left and said it's left him completely wiped out as well.

Part of my post-flu includes a kind of depression.  I also haven't been able to eat almost at all - complete lack of appetite.

To boot, my dad got robbed while I was away!  We were suspicious about why his cash seemed to be disappearing so quickly so we were keeping careful track.  In a one week period we know for sure someone (likely staff with access to his room) took off with $190 and I'm pretty sure it was about the same ($200) the two weeks before. It's very very frustrating that people who are supposed to be supporting seniors are instead stealing from them!!! It's the last thing I want to be dealing with, however, when and if I recover, we are going to buy a better safe (they stole from his locked cash box).  The theft has also been reported to the police, although likely they can't do much.

I know that influenza is one common pathway to M.E. (post-viral).  Right now I feel like I'm right back at day one post mono (or honestly, I couldn't tell you when mono became M.E.).  I hope the damage isn't irreparable and that I'm back to square one....I certainly hope not.  I had influenza in 2004 two years into M.E. and I know I managed recovery from that bout. Send healing/recovery thoughts my way if you can.

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.