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.