Identity

According to Oxford, one definition of identity is:
"the characteristics determining who or what person or thing is."

What is one of the first things you hear when you meet someone new? "What do you do?" People want to know who we are, often by asking about the roles we play. As humans, we have all kinds of identities: mother, father, sister, daughter, friend, but also perhaps athletic, outdoorsy, artistic, musical, spiritual, intellectual, or maybe job related - teacher, computer tech, politician, postal worker, student etc. etc. etc.

My question is, how much are these identities true?  Do they actually really say anything about who we really are?    Those of us who become disabled early in life (I guess early is realitive), learn that we are not what we do.  For example, I wasn't really an outdoor educator, that was just what I did for work, a role I played.  I've come to realise over time that the things I do, the roles I play, aren't actually who I am.

When I would lament to my specialist how sad I felt not being able to do anything useful with my life, missing all the things I used to do, and finding little pleasure in what I still could still do because I felt so awful and ill, she would say "we are human beings, not human doings".  What exactly does this mean? I've thought about this a lot.

Over the years I've come to realise that while what we do is often influenced by who we really are (our essence, our loves, likes and dislikes, personalities), the two things are not one and the same. We are something more than the things we do, the roles we play.

Making it even more complicated, those of us who have a disabling chronic illness sometimes start to identify with the illness itself.  "I am a sick person, I am a person with M.E."

At times, I start to feel like I am nothing more or less than M.E.  I wake up in the morning, take a breath, and feel the sickness pulsing through me, there is no escape…M.E. and me have now formed some kind of merged identity.  Maybe this is why lots of people use mediation and relaxation, trying to transcend the drudgery of a sick body.

In reality, I am not M.E., just like I am not what I do.  But occasionally I have to peel back the layers to find myself, to remember what matters, beneath all the labels, roles, and symptoms.

(Sorry, this wasn't going to be an ontological exploration, but it kind of turned into one, it's just something I've been pondering).

Being outdoors in nature is one way I have found to transcend my identities, myself.  I think when I'm out in nature, I realise how connected this whole world is, how interdependent. Being surrounded by other life, I feel part of a large living system, the boundaries of my identity break down, they become blurred.

I've been thinking about summer this week with another spell of temperatures constantly below -20 C and windchills  in the -30s and -40s.   I love winter but I am realizing some of the barriers to me accessing natural areas in the winter with my level of illness.  I miss getting outdoors on occasion.

Not only is it harder to just go and sit in the woods in these temps, but my favourite nearby urban wilderness is inaccessible for me as the parking area is not plowed.  It would take everything I have on a good day to walk across the parking lot (it's pretty large), so there is no way I can get to my nearby creek and woods.  I've been wracking my brains for a local space where I could go on a good day and get into the woods (including dog off-leash).

One option would be to walk on the lake (it's frozen, flat, and very solid in areas this time of year), but I crash hard every time I drive to these spots.  For some reason, I always crash harder from outings if they include me driving more than 10 min total (I crash from the outing anyways sometimes, but adding more than 10 min of driving makes it a sure thing).

Sorry my blog posting is more sporadic these days.  Once I'm done my PhD work session each morning, I don't have the mental energy to want to write or be online as much.

Dark Thoughts

Sleeping problems are rife in M.E./CFS.  I've been lucky, I' haven't had too many problems with my sleep.  I go to bed at night, read for 1/2hr to an hour, and then fall asleep.  I wake up still ill and tired, but mornings are my highest energy time of the day.

The exception to this is during PMS (sorry men), I always seem to have a few days of insomnia.  It reminds me how lucky I am not to have constant issues with insomnia.

I did do a sleep study early on in the illness, and they found very low-quality sleep.  Of the 4 stages, stage 3 and 4 sleep are the deepest, most restorative. At least on the night of the study, I had almost no restorative sleep and more than 70 'awakenings' during the night (most of these I was unconscious of).

As I've been lying awake for hours the last few nights (PMS), my head has been swirling with dark thoughts.  Thoughts about the uselessness of my life, my lack of friends, the issues with my family of birth, all the things I haven't experienced or lost due to illness (regrets), how stupid and pointless my PhD work is, and finally, ridiculously, I keep reliving the the death of my last dog, Merlin.  While these thoughts are not useful or welcome, they seem to arise nonetheless as I lie there tired but awake.

Of course I use techniques to try to keep them at bay.  I choose something happy, something I like and try to focus on that.  I try to block them out by counting breaths, using relaxation techniques.  Funny, but when I wake up the next morning I wonder how my world could have felt so bleak the night before, my concerns seem so trite in the light of day.  It's strange, but none of my concerns/regrets become untrue the next morning, they just seem to loose their power to torture me.

My PhD work, while leading me to feeling depressed and bleak at night, has me feeling productive and interested when I put in my session each morning.  I lay my big-picture concerns about the futility of my life and PhD aside, and focus on a specific task: editing a paragraph, reading an article or a book chapter, doing a data base search on some related topic.  Once I am engrossed in a task, I enjoy the break (a break from myself to be honest).

And while I am managing between one and two hours of work each morning in bed (imagine me surrounded by books, papers, pens and highlighters, propped up with pillows, my laptop on my lap), I'm noticing no ill-health repercussions.  That is, except the repercussions I expected…specifically, this energy I put towards PhD can no longer be put towards various other activities.  For example, I'm spending less time online, less time reading, and most sadly, no time at all doing art.

Today is a gorgeous day and I want so much to do a short outing outdoors, but I'm completely fried.

What shall I do with this precious time?

What should I do with this precious time?

This is a question for us all. And depending on our priorities and loves, the answer may be different.  Of course we all need to find a way to meet our basic needs: food, shelter.  But beyond that, do we prioritise spending time with friends, family?  Do we travel, have new experiences, meet new people, explore culture?  Do we try to contribute in some way to the bettering of the planet? Take on a cause, environmental or social?

Having a chronic illness doesn't change this question, at least for me.  It just changes the amount of time and energy I have to put towards life.  My precious time is, in a lot of ways, incredibly more limited than most people because I spend so much of my days in bed, too exhausted and ill to do more than rest. But when I am not simply resting, what am I choosing to with this very limited time/energy?

This question is spinning round in my head lately, because I am giving my PhD studies one last ditch effort.  I have two semesters of funding left. This is not nearly enough to get me to the end of my program (realistically I need two more years at my pace).  Unfortunately, I've used up all my medical leave, so I'm going to use the last of the funding and continue to plug away.

It seems absurd.  Why would I put my precious hour or two of usable daily time towards planning research I won't complete, that no one will use or read?  I'm fairly uninterested in my topic at this point…I think there have been too many stops and starts, I've lost my motivation.  I've also limited the potential study more and more in order to make it something I can do from bed (i.e. interviews) rather than something that is important and/or interesting and/or useful.

Why wouldn't I put this precious precious energy towards attempts to interact with humans more (I live in a virtual cave, a very lonely existence)? Or nature art, something I'm passionate about?  Why wouldn't I use my 5-10 more decent hours a week to try to earn some money doing something from home…..maybe writing or editing?  Great questions, right?

But it is what it is….two more semesters of funding, funding that is exempt according to disability, is nothing to scoff at.

Still, I know I will miss my precious time….to read, to do art.  And if working is sending my health south, I'll have to finally quit outright, drop out.  On the other hand, once I get going (starting with 15min a day), I know I'll feel less negative about it.  I got a lot accomplished last January - June just with an hour or so of work a day.

I had to go to the university today to do some paper work.  I was dizzy and off kilter the whole time, lightheaded, trying to focus and feeling drunk….spinny.  I thought "there is no way I have the health to participate in the world at present".  Sometimes living in my little world at home where I'm out of the house maybe 1-2 hours a week tops, I imagine myself to be more functional than I am.  When I do go out, I'm often shocked/surprised, how sick/disabled I am.

I've had a horrible week recovering from travel.  I've been so weak, out of breath, beyond exhausted.  But I seem to be pulling out a bit…at least that's my hope.

While recovering, I've been enjoying very much being at home, in my own bed.  I took some 'selfies' of me and the dog chilling.  Mostly, I just wanted to share both how cute, and what great company my friend Teagan can be.

I've also shared (above) two pieces of art, one from last year, and one that I started in 2013, but finished this year.  The one of three chickadees doesn't really look enough like a block print for my liking, but it's fun/wintery.

For all those who read this blog, I wish for you a 2014 filled with meaningful moments.  Thanks for all your virtual support just by reading this blog, my shout-out to the universe.

Getting hit by a truck on purpose.

I feel as if I've been hit by a truck.  And I did it knowingly, on purpose.  Forcing my sick body to do what I did, it was inevitable.  Travel, Christmas, 50th anniversary event, a visit with my niece and nephew, more travel on a record breaking day of cold.

When I got out of the airport in Thunder Bay (an hour late and exhausted) to wait for a taxi, the windchill was close to -50 and the temperature a good -40.  Of course the taxi waiting area was outdoors so I sat on my suitcase and found myself with tears in my eyes from utter exhaustion.  It felt like forever to get a taxi because they were understaffed for the unusually cold weather.

36-48 hours later I feel run over, clobbered, weak, breathless, achy, sore axillary lymph nodes, etc. etc. CRAPPY, basically.

With M.E., the research is showing that after activity, 24-48 hours later there are many immune, neurological and metabolic repercussions….so forcing ourselves to push through (fun and/or stressful activities, it doesn't matter) quite literally makes us sick.  Any M.E. specialist will tell you that if people with M.E. continue to live in the 'push crash' cycle, they are unlikely to improve, and very likely will worsen over time.

Still, living in a sick body, we all make decisions about how much to participate in life at the cost of our health.

It's a continual balance, like walking a tightrope.

At least I was mentally preparing myself for a year prior, to attend and help plan my parent's 50th, so I knew I would likely crash.  It helps to be mentally prepared.  Still, it sucks to be crashed.  I don't want to be here in bed ill.  I want to be out enjoying winter, doing art, walking the dog, even working, earning money, whatever.

And to be honest, sometimes I get a little miffed.  Whenever I walk in front of a bus in order to participate in some type of social friend or family visit, rarely do I ever hear anything from friends or family besides "oh you'll be fine", "look, you seem to be managing", "it's just stress", or "aren't you glad you did it?", "it was worth it!".

I mean really, it's like being told "aren't you glad you are willing to ram yourself into a brick wall so you can do XYZ?"  "I'm so happy you were able to get over your apprehension and stand out in a busy street and get hit by a car, good for you", "I don't mind that you incurred enough physical damage for a month of recovery, so I could see you".  And then I get accused of being depressed or down when I have to suffer days or even months of worsening physical illness and recovery afterwards.

I wonder how it would feel if a friend or family member (one who isn't sick) actually said something like "perhaps you shouldn't do XYZ, it could make you sick for months" or  "I'm worried that when you willingly stand in front of a bus or ram yourself through a glass door, you might get hurt".

No matter how you look at it, it's not easy to be sick, or for that matter, to be a friend/family member of a chronically ill person.  And ultimately I'm responsible.  I choose to push when I do, knowing the likely consequences.  I can also decide that XYZ amount of suffering and recovery is worth it (although I never know ahead of time exactly how mild or severe the crash might be).  No one else has to do the suffering afterwards.  No one else has to live through the achy body, fevers, sore throat, dizziness, weakness, hurts to breathe.

On the other hand, I don't want people telling me I shouldn't do anything ever, either.  I got frustrated with a counselor (who was also a caregiver to someone with M.E.) when she said "you need to accept that you'll never get your old life back, you'll probably never work again, you likely won't do any of the athletic activities you loved again".

I also realise I don't have a monopoly on suffering.  Yes, it could be a lot worse.  Yes, every human being on earth has struggles and challenges: mental, physical, emotional, financial etc.  A lot of the time life just isn't easy.

My parents themselves are aging and their health isn't great.  How will I help/aide them from so far away when I barely manage my take care of my own needs?  One day at a time, I guess. No point in worrying about it today.

I'm hoping this crash will only last a few days.  It could happen. It's unlikely based on past experience, but not impossible either.  And thankfully, very thankfully I'm crashed at home in my own bed with my lovely canine companion for company.

What a sad, kind of bitter post to start the new year off with.  Sorry.

To finish on a positive note, though, I read a New Years idea that I am going to try this year.  In the past I've made a list of small realistic goals for the year, but there is always the sadness for those things I didn't accomplish due to health.

Instead, the idea is to take a jar or container and throughout the year, when something especially good or pleasant happens, make a note of it and put it in the jar.  Then, at the end of the year, read about all the nice/good things that happened throughout the year.  I LOVE this idea and it won't lead me to pushing myself as is my tendency, being goal-oriented.  It is rather a practice of acknowledging the good things in life…..