Wednesday, May 12, 2010

World CFS/ME Awareness Day

If you don’t have CFS, or even if you do, you may not know that today is International CFS (ME) Awareness Day.

I did a quick google blog search and found that the blogosphere is very aware of the day. Here’s the link to my search results. There is an abundance of bloggers sharing their experience of living with this chronic illness, and if you can make twenty minutes in your week to look around at some of these posts, I’m sure your understanding of the condition and some of the challenges it poses will be expanded.

It seems we are reasonably lucky in Australia, because in typical Aussie fashion, nobody is too bothered with us!  The disadvantage of this is that the funding available for research is next to non-existent, but the advantage is that we (PWCFS – people with CFS) are rarely pursued by service providers or the medical profession trying to withdraw support, or force some untested treatment regime on us.

There certainly are still medicos around who don’t believe in it, or think it’s psycho-somatic, but fortunately they are fairly rare in my experience, and basically my philosophy these days if I encounter someone like that, professional or otherwise, is to simply move on. My energy is far too valuable to waste trying to convince the “unconvincable”. 

As a former occupational therapist, my natural response to having CFS is a problem-solving one. I’m usually focussed on the present and the future, and only explore the past as a means to review and hopefully improve my strategies for managing the illness.  Both my husband and I have CFS, and this year in November will be our 20th anniversary – of being ill, not being married (that’s 23 years, for those interested). When people ask us “are we getting better?” or something similar, we both agree that the major factor has been in how we manage our energy and our daily life.

After nearly 20 years, I’d be pretty surprised, no make that shocked if we were cured. There have been medications which manage some of the effects of the illness and having tested my body both ways, I do seem to be a lot better taking a small trailer-load of medications each day, than when I went off them for 2 years.

This certainly doesn’t mean I stop seeking treatment and hoping for improvement, but I did stop putting my life on hold quite a while ago. CFS or not, I don’t know what the future holds, I only have today, and if I get to the end of my life and realize that I spent it waiting for “the right time” to do what is really important to me, I’ll be so angry with myself.

I know I don’t always have the balance quite right, but the whole thing is a process, which requires self-awareness and frequent tweeking.

It starts with being very honest with myself about the current situation, so I don’t set myself goals that are unattainable. That’s just self-punishing for no good reason. Oh, I’ve made myself miserable, spending many years with unrealistic hopes and dreams.  I found that I was only able to move forward and feel like my life was still on some sort of trajectory, by totally accepting what is, and starting from that place. And I found that I had to be brutal, to search the depths of my heart and dig out those  aspirations that lay way beyond by abilities at this time. I don’t allow myself to consider some wild future – I’ll work with whatever the future brings when it arrives.

Along the way, I spent large amounts of time grieving for what was and what might have been. For every person with CFS, this is a huge issue and I am no different. For me, this has included career, money, children, to name a few. But after a period of years, even though these were BIG, I really felt I should be able to move on. After all, grief is a process too, and even though you never fully recover from a major loss, it is reasonable to expect the pain will decrease and eventually remembering the person or thing you have lost can bring joy instead of heartache. I saw a grief counsellor eventually, and this work enabled me to move on from the sadness and anger where I had become stuck. It was an essential step which enabled me to fully embrace my life as it is.

I’ve gone on a bit more than I planned in this post, but I wanted to write about my experiences of the past twenty years living with CFS in this broad-picture way, instead of the small weekly details I usually post. This is just my experience, and if you meet someone with the illness, you may find they are a lot more ill or a lot less. We are individuals!

I started blogging in the hope that people would understand something of a life affected by CFS, but being so achievement-oriented, that is mostly what I share. CFS has become part of the framework that my life must work within, like being a woman of the age I am, living in Australia, and so on. Most of those things remain subconscious workings as I try to lead my life as well as I can.

9 comments:

  1. Well done, Amanda! Both in your approach and, particularly, having the guts to write so honestly. Yes, I do know people who've been hit with this;they did all have your clear-headedness.
    One was (I think) marginally autistic, but brilliantly artistic. I wonder if there is a link?

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  2. I feel honoured, actually, to be granted a window into your life, Amanda. I think you achieve amazing things which is a tribute to your honesty and self-examination, and your determination not to let it define you. I hold a little piece of me that hopes that one day you will wake up without suffering from CFS, but I can only do so because your pragmatism enables you to engage with life joyfully, and without the need for fairytales (if that makes sense?). Sara x

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  3. thanks for sharing your story amanda...

    I was especially interested in your experience with oz medicos..... my mother had CFS (goodness I'm trying to think how long ago.... hmmmm I'd say it commenced about 25ish years ago....coinciding with 'change-of-life') she went through much of what you described - with medicos telling her it was 'all in her head'. She has always been a vibrant, energetic, extremely fit and healthy person - so CFS was a terrible shock for her.

    Mum had chronic CFS for about 8 years (she could barely raise her arms to get dressed on the worst days.... but battled on)- then the symptoms eased and for a further 5ish years she gradually emerged from the ordeal

    Now here's the sting in the tail of her story

    about 5 years ago she started to be a bit unwell - then a GREAT DEAL unwell(couldn't sit on a chair without falling off)..... and as we did the rounds of medicos that old 'its all in your head' routine was brought out for another run

    2 years ago she was finally diagnosed - acute Parkinsons Disease - the specialist believes she had PD for at least 10 years.... and that CFS was probably the precursor (maybe even an early indicator of early onset PD that then went dormant for a bit)

    medicos have a great deal to learn from folk who experience chronic conditions - not the least being 'just because it not easy for you to give it a label and a cure-all pill - it don't mean it's not a real thing'

    end of rant!

    sending supportive vibes your way

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  4. Thank-you folks for your support. It really means the world to me. The friends I have made online are a vital means of staying positive and connected. And not only when I'm feeling really low and can't get out,it's also terrific to share the good news with you guys.

    Di:I don't know of any official research about CFS and being artistic, but there is something about having a nervous system that is very sensitive, and that might be a connection??

    Sara: Yes, I do understand the paradox. (And of course, a cure/recovery would be INCREDIBLE! but I'm not holding my breath)

    Ronnie: I'm really sorry to hear about your mother. I guess her situation is the really scary bit, the fact we don't know what happens to people when they have had CFS for 30 or 40 years. It's the main reason my husband and I stick with our specialist. He has us on a number of treatments aimed at preventing that type of progression in the various body systems, but doctors with his sort of experience are very rare here. I know that when I stopped seeing him because I moved to Melbourne and I went off most of my medications, I developed hypothyroidism and diabetes insipidus (not sugar diabetes)and in all the other years of having CFS, I have never developed any other conditions. I just wish this level of care was available to everyone who would benefit. All the best to your mother.

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  5. Amanda !

    Thank you for writing about cfs/me .
    I know what you is talking about ,because I
    have got cfs since 1994 .
    I think it is the best way of living with cfs is like you are doing !
    I`m keep on doing artstuff , and are so happy for being able to do so , and I think this makes me better !


    Have a nice and creative day !

    Best from Liv

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  6. Really interesting post, Amanda, thank you for sharing a little more of your story. I too have found that embracing one's life 'as it is' is so important.

    About the situation in Australia - you're right, nobody is too bothered with us! It has its pros and cons. At the severe end of the spectrum I've frequently found it difficult to access medical care and haven't always had the option to just move on and find another doctor, but it's certainly a good approach where possible!

    Thanks again for your honest account of your experience. I always enjoy seeing your artistic endeavours, too.

    (Just in case anyone's interested, there's also a list of posts for Awareness Week here: http://meaware.wordpress.com/participants/)

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  7. Hiya and thanks for visiting my blog and taking the time and energy to comment. I was dismayed and shocked to hear about your trip to the endocrinologist. I know I am really lucky with my medical situation. I have a doctor who is a physician and he specializes in CFS. My husband and I have faith in his abilities and with his support we've had a reasonable time accessing the services we need. There's a lot of symptomatic relief to be had from allied/alternative health therapies and they are much more difficult to access because they are so minimally funded by medicare, but that is a problem right across the community. I do know that when I lived in Melbourne for 2 years and hadn't found a doctor who I trusted, I felt not only more ill, but scared, vulnerable and angry. I do count my blessings, and I know not everyone is as lucky. (I'll post this on both your and my blog, because I want to make sure it reaches you). Take care! xo

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  8. Wonderful post, Amanda, sincere, honest, and I imagine, a light in the darkness for anyone who is just learning to deal with this chronic illness. As a chronic migraine sufferer for most of my life I know how you feel about the constant medications and the concern about what they could be doing to you long term. I always learn a lot from your posts about CFS, and hope I can take some of your wisdom and spirit into my own life.

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  9. i have to come back and read this again i think...brain isn't working right now however i think i've seen enough to know i can find a lot that is helpful in here.

    i had seen your comment on greenword's post and wanted to ask you who you are seeing in brisbane, couldn't get the email link to work though...would be really interested to know. and looking forward to keeping an eye on your posts.

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