My Secret Life

It's Sunday and I'm starting to come out of an ME setback that's had its hooks in me since Thursday evening.  More accurately it's been in the works since last weekend, but I was able to work on Tuesday, Wednesday and Thursday, although at one point on Thursday afternoon I had to lock my office door and sit on the floor with my head between my knees for a while.  Then I unlocked my door and carried on with my afternoon like everything was normal.  On my way home, I noticed when I was paying the dry cleaner that my hands were shaking.  I went out for dinner with my husband and parents and let on to my mother that I was feeling "a little shaky" so that it wouldn't come as a complete shock to them if I lost my composure.  My mother advised me to "shrug it off".  I didn't tell her that coming in waves throughout the evening there were times when I felt like I might collapse.

A lot of my life is spent in this manner: minimizing symptoms, hiding how I feel, pushing through.  Pretending to be fine.

In some ways, this is a choice.  Sometimes I do it because I don't want to have to deal with peoples' reactions.  If I told my mother how I was really feeling she would panic and fuss.  I could not rely on her to be comforting and reassuring.  Usually what ends up happening in any upsetting situation is that I end up comforting my mother.

Sometimes I do it because I want to forget about feeling ill and pretend that everything is fine.  For example, I have a set of friends, a married couple.  I'm pretty sure the wife-friend sometimes reads this blog.  (Hello wife-friend! *waves*)  So she probably knows that I'm dealing with a debilitating chronic illness.  But we don't talk about it.  I'm sure that I could bring it up, and they'd be sympathetic listeners.  But they're super-fun to be with, and I don't want to waste my time with them talking about my troubles.  I want to put all that aside and just enjoy my time with my friends.

Sometimes I do it because I want to be a cheerful and reassuring person, and don't want to burden others with my worries when they have worries of their own.

At work I stay quiet out of fear for my job.

But the truth is, this illness is gradually taking up more and more of my time and energy.  I'm doing less and less outside of work, and I still can't seem to avoid triggering setbacks.  Any little overexertion cuts the legs out from under me for days or even weeks.  My last sin was venturing out during a heat alert.  Ken wanted me to go down to the lake with him to tour a Canadian Navy battleship that was docked at the harbour, and it sounded like fun.  I thought: we'll be by the lake, so it'll be cooler there, and it's supposed to be overcast, so no direct sunlight.  I calculated how long we'd be walking outside.  It seemed doable.  And it would have been.  Except the boat wasn't in the harbour where we expected to find it.  Ken was like, oh, gee, it must be in that other harbour, down the shore a ways.  So we decided to walk further, 2 or 3 times as far as the original walk, which would have been fine if it weren't for the heat alert.  We were halfway there when suddenly I couldn't go on, and we had to take a very expensive cab ride back home.

What used to happen when I had heat exhaustion was I'd go home, rest, and be fine the next day.  Now when I overexert myself my body winds itself up into a tizzy.  For a couple of days I feel unwell on that end of the spectrum.  Then I start to unwind.  For a few days I pass through a part of the spectrum that appears to be normal, so I think I'm over it.  But then I keep going down, into a crash.  That lasts another few days, at least the worst of it.  And then it takes more time to even out again.

So, usually what happens is that I start out feeling pretty good.  I assess something simple, like taking a walk by the lake, and figure I can handle it.  Then I'm having such a good time being out and about and pretending that I'm a normal, healthy person, that I get over-confident.  I agree to walk a little further than I should have, or I stay out an hour past my bedtime, or whatever little thing that would barely ruffle a hair on the head of your average human.  Then BANG! I'm reacting.  It takes me the rest of the weekend to get back into a condition where I can comfortably leave the house and function.  Then I go to work, and even my short week feels too long, and by my work-from-home Friday I'm crashing again.  So I spend another whole weekend cursing my fate and barely leaving the house, gathering my strength for work on Monday.  It takes another week or so to feel like "myself" again.  And then when I'm finally feeling good and optimistic again, the next trigger will kick in and start the cycle over from the top.

These cycles have taken over my life.  I no longer have any hobbies outside of reading, blogging, and going for sedate walks.  My social life is minimal, and I regularly have to cancel or turn down engagements because I'm trying to save up my energy for work.  People at work ask me how my weekend was and I sometimes don't know what to say to them.  "Fine" works some of the time, but I don't want to appear stand-offish.  I like to be able to share a little something of what I've been up to so that we can have a human social bond.  But I sure can't tell everyone that I spent the weekend with my feet up, feeling like crap, recovering from another relapse of my chronic illness.  It's a lonely dilemma.

Frankly, sometimes I'm terrified about my future.  Although it's hard to say for sure, I feel  that I'm slowly deteriorating, getting more sensitive to all the little stresses that challenge my homeostasis.  I've been reading more about Myalgic Encephalomyelitis, and that reading is both confirming that I fit the profile of the disease and scaring me half to death with seeing how bad things can get.  This condition is an amplifier, making every stress multiple times more stressful.  I just learned this week that it does that by screwing with one's neurotransmitters.  Neurotransmitters are the communicators whose job it is to keep the body in balance, so when they're screwed up, anything can go wrong.  That explains why the symptoms are so wide-ranging and unpredictable.

I feel very vulnerable.  Some days I feel like I'm barely hanging on to passing for "normal". It wouldn't take much of a push to destroy that delicate balance.  A car accident, another illness, a major life stress...  And then what?

I guess I'll have to burn that bridge if and when I get to it, to use my favourite mixed metaphor.  I do have a support system.  I'm not alone.  People would help me.  I wouldn't die homeless and starving in the streets.  But still.  My identity and my freedom do not feel secure.  I am feeling insecure.  Pretending that everything is fine makes me feel more alone and unsure of my support systems.  Next week I'll probably feel better, and even taking a few steps away from that cliff edge will allow me to relax for a while.  But the next setback is always just around the corner, and I just pray with all my heart that that's not going to be the one that pushes me over the edge.