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?