A wrench in the plan

I am contemplating how completely different my life has been since coming down with a disabling chronic illness.  Not only is my life completely different from what I ever imagined, it is also a life in stark contrast to the lives of the healthy people I know.

When I was younger (mostly in my 20's) I was very active.  I had a job that involved being physically engaged (wilderness guide/outdoor educator).  I had a bucket list of goals/hopes and I expected I'd be one of those "older" people I knew that still skied, mushed, ran, socialized, worked, volunteered etc.

I expected I would continue on the path of an active, productive, healthy and useful human.

But it is not just those of us that are ill that have wrenches thrown in the paths of our lives.  I realize all kinds of things can happen that change the "course" of an individual's life.  Death of a loved one, loss of a job, an economic depression, in some countries war, or perhaps disaster (fire, earthquake, flood, hurricane).

You think you are on one track, and all of a sudden, you are on another (with little choice in the matter).

One of the hardest things for me the first few years was loosing the identity that I had attached to my work and lifestyle. I thought being an active outdoorswoman was who I was.  I "identified" with all the things I did.  So when I lost my health and my career, I also felt I'd lost my identity.

As well, when you are sick and feel awful every day, when everyday is a struggle physically (which of course affects the mental and the emotional), you feel a shift in your personality....well at least I did.  Sue just wrote a great post about the everyday grind of being sick here: http://livewithcfs.blogspot.ca

I am no longer active, or busy, or employed.  Rather than energetic, light and friendly, I so often feel heavy and cranky and impatient.  Someone recently pointed out how I'm much more of an intellectual than a people focused person.  It hurt.  While I've always enjoyed that intellectual side, the last 10 years my lack of sociability is by no means a choice. When social events or outings are so draining, you tend to avoid them.  Being too sick to leave the house is also a huge deterrent to being social. I have even turned from an "extrovert" on personality tests to an "introvert".

I've been thinking about this in relation to a friend reunion that is happening this week.  It would a be a 4 1/2 hour car journey (one way) to attend. There were some real efforts to bring it closer to where I live that didn't pan out.

I had thought I'd wrangle the rides I needed from people to attend (I can't drive far without awful consequences), but on a crash day this week as I lay in bed feeling the worst of the flu symptoms and weakness I thought to myself,  "this is just not worth it to me.  I don't want to be laying in a strange space, feeling like shit, wishing I were home in bed".

It wasn't the physical that most worried me, it was the emotional fall-out from the physical crash.  Also, the idea of being amongst some of my favourite people, but laying in bed in another room too crashed to enjoy it. (This has happened so many times I've lost count).

You know, I would have thought that after being sick for 10 years, I'd be tougher.  But instead, I feel as I have less tolerance for suffering.  When I crash, I lay in bed, not wanting to move or breathe because the deep breaths hurt so much.  If feel as if I have so little patience left for this illness.

The first few years I was sick I pushed hard all the time to do these things - to remain the person I was.  I remember driving 20 hours (two 10hr days) after recovering from the flu no less, in order to see these same women off on their trans sub-arctic dog sled/ski expedition (the one I had helped plan and had so hoped to go on).

I remember being so sick the day after the drive that I fainted trying to get out of bed the next morning.  I remember sitting in the restaurant the night before they left on their journey shaking with fatigue and fever but "toughing" it out.

But I just can't seem to do that to myself any more.  I don't know why?  I am so different than I once was.  I am so different than an average healthy person let alone an active one. My life is so night and day from what I'd expected.  I live like a 90 year old. I have so little energy.  I have to plan out every little thing in order to avoid consequences.  But this is my life.  It's the one I've got, the one I have to navigate.

I would like to do something again.  For three falls I taught at the university a few hours a week and managed OK.  I loved feeling at least slightly useful.  I liked the social interaction and sharing a bit of my knowledge with young adults.  I found I gained energy from them.

Right now I'm mostly resting, mostly homebound.  I spend the days literally resting, and also surfing online, watching movies, reading.  I am doing some art again which in some ways I consider work.  Especially if I can occasionally create a piece I like enough to give as a gift.


p.s. I meant to post this last week, but hdk has a great post on her blog with a poem at the end about Joy and Sorrow, and how the one, is a necessary contrast, allowing us to feel the other.  Check it out: http://chronicfatiguechronichope.blogspot.ca/2012/09/peace.html