Saturday, 12 November 2011

The line between acceptance and giving up.

I really wish I had answers for this...

Wow there are so many things I want to talk about in this post that I don't know where to begin.  Perhaps with a story...

I once had a friend who was functioning in society fairly well but clearly had some difficulty maintaining a consistent approach to her life.  Then she received her diagnosis and suddenly everything became worse.  She began to embody and experience all the worst symptoms of her illness.  Her attempts to lead a normal life fell by the wayside as she quite tangibly embraced her diagnosis.  I am not judging her.  I know it had always been hard.

Back in 2009 I received a diagnosis of Fibromyalgia and in view of my friend's experience I decided not to research FMS and not to read any kind of list of symptoms.  I was vehemently opposed to "embracing the diagnosis".  So instead of reading the symptoms I listed the things I was experiencing and then investigated to see if they were FMS related.
Pain - Check
Fatigue - Check
Vertigo - Check
Poor balance - Check
Digestion issues - Check
Skin sensitivities - Check
Strange over the top startle/shock response - no check?
Trouble Swallowing - no check?
Clumsiness - Check
I just didn't want to subliminally convince myself to develop more problems than I already had.  I think this was probably a stupid approach but I was quite determined at the time.

Of course time passes, and things started to get worse, and I began to have to accept that I really couldn't ignore these problems.  This led to me wanting to find my community and wanting to relate to other people who really understood what was going on.  Those of you who know me personally know that I am a curious person and that I process and assimilate information very easily and really without trying.  So naturally the idea that I could not be educated about FMS became even more ridiculous when I reached out to others.

Still, as I have mentioned elsewhere, I had some strange delusion that coming home to Australia would make everything better...  somewhere in my mind I saw myself here (in Oz) as the same person I was who left here in 1999.  I'm not.

Please note that this blog is the product of a crappy, exhausted, painful day.  It isn't always like this and I don't always feel this bad.

I think my twisted idea of not learning so as not to embrace etc was just one form of denial, the whole 'healthy when I come home' thing was another...  I also think that my body is demanding that I accept what's going on and I think I am starting to do that.  (All this blogging helps BTW).  But there is a side effect of acceptance.

When I accept that I need help, in any form, I can relax a little from the constant battle to either hide my problems or "tough it out" and I now wonder if that was what I was seeing in my friend all those years ago.  Which makes me wonder if it is a good thing at all?

This morning I drove The Boy to the train station (he is off back up the coast to go to his school formal (the prom for my North American friends)) and I got out of the car and yelped in pain as my back reacted very badly to the change from being seated to standing.  I waited a few moments for the worst of the pain to pass and for the rest of my body to acclimate to standing.  Then carefully and tentatively I started to walk using my walking stick.  By now The Boy was 30 feet away from the car on the way into the train station.  He stopped and waited a bit and teased me about looking like an old grandma (not that I don't have many friends younger than I who have grand children) and then he asked me an interesting question.  He asked if I use the cane so that people don't bump into me.  It made me think about all the reasons I use the cane... sometimes... and I don't always use it... but it also made me think of the visual message that using it sends to others and the fact that it does have a supplementary benefit of making people steer clear.  I don't cope well with being bumped, my balance is terrible, every contact with my body hurts, if I fall it is excruciating (and I do fall too often), and I have anxiety about people, so I have a HUGE personal space.  The walking stick gives me more room and that is a good thing.  But it also allows me to let my weakness show and that is something I have avoided doing for my entire life.  Remember I was raised by a super stoic...

I guess I have rambled on long enough in this blog but I could go on for a long time yet if I let myself...  I guess I am just wondering how closely giving up or giving in is related to acceptance...

I read a really interesting little book last year by Richard Bach, the bloke who wrote Jonathan Livingstone Seagull, it was called 'Illusions: The Adventures of a Reluctant Messiah' and it was non religiously spiritual, full of really amazing messages about life the universe and everything... not the kind of thing I usually read but it had, LITERALLY, thrown itself into my path, it turned up in my car with no known source.  The salient point here is that the book began with a long 'hand written' list about The Master and a parable that related to creatures that lived on the bottom of a crystal river and clung to the rocks as the raging current ran over them until one creature released his/her grip on the bottom and was swept on by the current.  This creature met other creatures whose lives were different and experienced adventures and growth that clinging to the river bottom could never have provided...  It was a great read which unfortunately I left behind in the US.  I am that creature.  I have thrown myself on the mercy of the current.

In spite of this I am still struggling with these issues...  Is letting your pain show because you are becoming more accepting tantamount to giving up the fight?  How much of the fight was really about maintaining my identity as a healthy vital person?  How much of the fight was really about my ego and about what other people think?  How much of the fight was really about trying to cling to the bottom like all the other creatures?


  1. Ive just found "fighting" takes up a lot of energy and of course we have so little of that.I use a cane for balance and support and yes the side effect is that people realise there is something wrong.My current internal battle is mobility scooters in stores.I know i need it in large stores especially but i still say "no im ok" but hubby has gotten to the point that he refuses to go in the store until im in a scooter lol.Its funny really because he was raised to "ignore"disabilities.
    This fibro certainly has a mental almost spiritual journey to it doesnt it.
    Take care and try to love yourself more ,you are important and cherished just as you are ....gentle hugzzz...Michelle..XX

  2. I think that there are two fights, and our culture/societal norms don't differentiate between the two very well. The first is the shame of being ill. I'm not particularly fond of the word "shame", but I haven't found one better yet. Being sick is something that you are supposed to fight! Be a warrior! Rawr! You either win the fight (get better) "lose the fight" (die). We start out fighting our symptoms in the hopes that we'll "win", and that's what's expected of us: to be cheerful, determined, and stoic about pain. Don't let anyone else see you suffer! You might make them uncomfortable!

    In long-term or chronic illness, at a certain point we begin to realise that fighting to appear healthy despite our symptoms, really just makes those symptoms worse and makes us unhappy because we can't live up to other's expectations of us. Why don't you get better? Aren't you eating right? Maybe a different medication? To others, showing pain or exhaustion (which has always been present) appears to be "giving in", while, instead, it is hopefully just letting go of this pressure to appear not-sick. Admitting "yes, this hurts me", or "I don't feel well right now" or "a cane both helps me keep my balance and keeps jerks from knocking me over" (been there!), isn't giving *up*- it's taking the best care of yourself that you can, to have a happier, more peaceful life.

    I struggle with this, too. It's easy to get caught up in wanting to be how I was "before". Acceptance has come to me in very, very, small steps- but trying to live up to others' expectations was hurting me as much as my RA. I now admit more, ask for help more, pace myself more, allow myself to enjoy what I have more, and it's making me happier and my pain more manageable. No one else can understand your pain the way you do- you're the only one in your body, so sometimes we have to spell things out with big letters for others. They might not understand, but you owe it to yourself and no one else to do what's best for you. *hugs*

  3. I have a friend who has a whole host of health issues (different from yours and mine..M.E./CFS, Fibro) but he was beginning to have problems with mobility and his GP suggested that he use a cane: not so much for support as a way of 'signalling' that he was slower and in need of more space when he was out. My friend was not keen (to say the least) but eventually gave in and got a cane. It has made a huge difference to his confidence so I'd say it a good thing.

    Really interested in the whole notion of how much we fall into a role/certain behaviours/ways of being according to how much we know about our symptoms. Its something that often crosses my mind but something I have rarely voiced.

    Glad to have come across your blog. I'll be back :O)

  4. I saw where you talked about this on Chronic Babe and responded to some of it there.

    I think I have accepted my illness, but I still try not to show it as much to my healthy friends. I feel like I'm losing most of them pretty fast anyway, it I start to show more...well I'm just afraid.
    I find myself avoiding contact with most people lately. Simply because of my hearing, I'm losing my hearing and it's very hard to be in a group and not be able to keep up with a conversation, or have the noise actually hurt. I've explained this to my friends, and hope they understand, hopefully, things will get better as I get more treatment.
    Right now I'm in that part where I'm not quite bad enough for some treatments but too bad for others.

    I've gotten away from the point.
    I just wanted to drop by and say hello.

    Oh, about the cane, I have to use a walker sometimes. Talk about having your own personal space. (I have vertigo attacks, and disequilibrium). I've only used my walker in public once. It was so hard, the aisles in the stores were too crowded (how do people in wheel chairs do it?) Often I just use the basket to hold on to. I can't drive, so I always have someone with me. That helps a lot.
    When I was able to just use a cane, I didn't notice anyone really keeping a distance. Sometimes I wanted to beat them over the head...hello, I'm doing my best, stop shoving and making me feel closed in.

    I'm reading Toni Bernhard's book right now "How to Be Sick". A great book! So far it has really spoken to me about how to accept things, and still retain my identity.

    anytime you need to talk...

  5. The decision whether or not to keep clinging to the bottom reminds me of the red pill/blue pill decision in "The Matrix". I suspect I'd still be clinging to the bottom with the other blue pill losers...

  6. Michelle - thank you, I really value your support and knowing that we are on such similar journeys. Yes, fighting is exhausting!
    Redefining - Rawr! (so you think we have anyone convinced?) thanks so much for your thoughtful response.
    Wendy - that book is coming at me from all directions so I probably need to try and locate a copy! Thanks for your offer of support!
    Kerry - I think maybe we all keep clinging as long as we can... but who is winning and who is losing? Thanks Pseudo!