Sunday, September 11, 2011

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.


DarcKnyt said...

I know it doesn't help much coming from an Internet-only acquaintance, but I'm going to say it anyway.

I can't tell you how heartbreaking this is, Spark, but please know that we are here rooting for you, praying for you and loving you. This isn't an easy thing you're facing, and you're doing it as bravely as can be expected. I really admire your courage and the conviction you have to continue to live your life to the best of your ability.

Debilitating diseases like this are absolutely stressors, and while I admire how well you hide your feelings, I have to confess as your friend I want to know what's really going on with you. I don't see you sharing this as a burden, I see a friend asking another to help her carry a load. If it were armfuls of groceries, you'd ask. If it were a huge rock on your foot, you'd ask. This weighs as much as anything can on you, and you bravely don't ask for help carrying it. But if you want help, I'm here and am willing to hear it all without making you feel like you're saddling anyone with your troubles (which wouldn't be true anyway).

I will continue to offer my prayers for you and to support you any possible way I can. I think you're a fantastic and wonderful human being and if I could wish this away for you I would, in a heartbeat.

Hang in there, trooper. You're doing a LOT better than I would in your circumstances.

Sparkling Red said...

DarcKnyt, Thank you more than I can express. Your reply is the gift of a friend's love and understanding that is exactly what I need right now, and the whole "internet-only" business doesn't make any difference to its impact on me. Your message moved me to tears. Thanks for the reassurance that I'm doing alright in how I'm coping with all this. You are a great help and support. Sometimes I crave the simple recognition of people knowing how hard I'm trying, but I can't ask that of the people closest to me in my offline life because I'm trying to protect them from how bad I really feel: a catch-22. Maybe in this case "internet-only" is just what the doctor ordered.

Warped Mind of Ron said...

{HUGS} It's an illness and part of you, no matter how much we wish it wasn't, so let some of the burden of hiding this out here. We care and will lend what moral support we can.

Lynn said...

This does sound like a scary time - I'm so sorry this is happening to you, SR. (((HUG)))

LL Cool Joe said...

Oh this made me feel so sad to read Spark. I'm so sorry that you are suffering like this. I will also pray for you. Just take each day as it comes and maybe next week things won't seem quite as bad as they are now.

I admire the way you are fighting this damn illness the way you are. Don't give up the battle buddy.

Pixiebaby said...

Awww Spark, I can hear so much of myself in your words and I am so sorry that you are going through all of this. I can even understand that trying to hide it from others and just say that you are fine when you are anything but. I used to do this a lot more and still do sometimes because at times we want to present as normal a front as we can in the hope that if we pretend it enough maybe it will be true? Just know that you are not alone...there are a lot of people here and in your everyday life who care about you and are here for you. ME is a scary thing...I was first diagnosed at 23 years old and I am now 39 so I can relate. The cycles are so random and you never know what...if going to set it off. Best advice I can give (even though you didn't ask for it) is to be kind to yourself. Do not beat yourself up and feel as though you aren't good enough or strong enough. Nothing could be further from the truth, but sometimes it's easy to slide down into less than positive feelings about feeling badly or not being able to do something. Just keep doing the best you can and know in your heart that you are still the same wonderful you as before this hit. Sorry to ramble on so much! Just know that I am here if you need me ok? *HUGS*

G said...

It's tough living with a chronic illness. There's only so much that you can do and sometimes, you just have to let the people closest to you know exactly what it is that you're going through so that you can get the help that you need when you need it.

Speaking as someone who has a chronic/debilitating condition, there is no shame in asking for help. When people know what you got, they will help if you ask for it.

Granny Annie said...

Once again I say, "Bless your heart".

Sparkling Red said...

Thanks Ron! I certainly will do that. Your sympathy means the world to me.

Thanks Lynn. Keep those hugs coming - I need lots! :-)

Thank you Joey. Things will definitely get better again. That's how this roller-coaster operates. I appreciate your prayers, and your acknowledgement, very much.

Pixiebaby, thanks so much! It truly helps to have the support of someone who's been through this. It is SO frustrating when every little thing becomes a trigger. At my cousin's engagement party yesterday I could only manage to stand and converse for 15 minutes before I felt overwhelmed and had to take a seat. I guess that would seem like a long time to others who have it worse than me, but heavens! It sure doesn't seem like much when I'm used to being able to stand and walk for hours without a second though. Please "ramble on" as much as you like, because it helps.

G: Yes, you're another one who speaks from experience. Thank you for your encouragement. It's tough to show my vulnerability, but sometimes I don't have much choice. It's good to remember that it gives people a chance to show their love and support.

Granny Annie, thank you! I can use all the blessings I can get, especially my poor old heart, which is literally struggling to keep up these days.

DarcsFalcon said...

Ah Spark. I'm so so sorry you're going through this. What an awful thing.

Of course, it's just like you to try to keep your chin, and your spirits, up so as not to worry people. But you don't need to do that here. Vent. This is your place. You are free here and we'll still love you and listen. *hugs* Of course you know I will pray.

You know, it just occurred to me - the way you describe your feelings is much like how some people deal with things like PTSD and grief, depression, etc. Sometimes trying to put on the brave front can be kind of debilitating in and of itself.

I wish I had that magic wand - I'd make it go away for you.

Jenski said...

Hope you have more energy now than when you posted! My Mom has MS (and I just got back from an MS weekend event), so I know so many stories like yours of people living with chronic illness who don't look like they are sick. It might help to have some co-workers at least partially aware of your struggles so they can make you leave if it is a rough day. ;-) It sounds like with ME that even when you feel better those neurotransmitters are not back to normal so it is easier to react to a stress again? Keep taking care of yourself!