Having been diagnosed officially with Chronic Fatigue Syndrome (CFS / ME) in 1992 I have had many times when I have seen no light at the end of the tunnel.
But whether it’s the eternal optimist in me, something has always pushed me on, and I have always believed there were answers out there for me that I just hadn’t found yet.
Sometimes the waiting for the answers didn’t seem worth the effort, but my message to all my fellow survivors of this debilitating illness on this ME / CFS Awareness Day 2016 is to never give up on yourself and never give up on there being ways to heal this illness in you.
In “X-Files” speak – “the truth is out there” 🙂
The long and winding road
My 25+ years of CFS / ME and EHS have definitely been a long and winding road, full of pot-holes, unexpected hairpin bends, and cliff-edge roadwork.
But along with this, there have been many unexpected scenic views, beautiful sunsets and others signs that have shown me there is hope amongst the darkness.
The medical profession has had few answers to my wide array of weird and not-so-wonderful symptoms over the years.
Luckily, in 1995 I found a great GP who was well-versed in the CFS / ME literature (at that time in Australia, and even now, it is still more widely known as CFS unfortunately), and was also open to alternative therapies.
For some years, even well prior to the official diagnosis, I had been exploring a range of so-called alternative therapies. They are alternatives to the Western medicine model, so I guess that’s where they get the name ‘alternative’.
I have definitely had more help from these alternative / natural therapies than anything Western medicine has come up with. That’s not to say Western medicine doesn’t have a part to play in the diagnosis and treatment of CFS / ME, but in my experience it has played a peripheral role once it was established that most of what they had to offer me was not effective.
The Natural Route
So in my search for answers – and, as I said above, I always believed and continue to believe that there ARE answers to be found – I have mostly gone down the natural route (after exhausting the medical profession’s offerings).
This is where I have found my hope – over and over and over again.
Some treatments / modalities have only helped one or two symptoms, but that’s one or two symptoms I don’t have to manage, and often they’ve been significant symptoms that have vanished.
In recent times I’ve been working with an incredibly talented applied kinesiologist / chiropractor, who has identified and healed many issues in my body that no other practitioner (and there have been MANY, both medical and natural) have ever identified, let alone been able to treat.
A colleague of this amazing woman also recently gave me an explanation for the intense electro-sensitivity pain I’ve experienced from all electro-magnetic fields (including this computer) for over 13 years. He can tell me this information due to research that has only been completed in the last 2 years in cutting-edge pain research.
So when I say NEVER GIVE UP, this is the sort of thing I’m talking about.
When I first went in search of answers to the EHS back in 2003, nobody had any answers. Nobody I have seen then or since has ever seen anyone as severe as me, and they have never been able to 1. explain why I experience the pain I do, or 2. help treat and heal it.
My dogged approach
Don’t get me wrong. I have wanted to give up many, many times. For a period after the EHS turned my life up-side-down, I was definitely depressed and had suicidal thoughts. But even then I didn’t give up.
In my everyday life these days, it’s common for me to utter the words “I don’t want to do this anymore”, “I can’t do this again”, and similar mantras.
But I rarely stay in that space. After feeling sorry for myself for the time required (and yes, I think it’s something we definitely need to acknowledge and feel when the emotions are there), I get myself to a place of, firstly, acceptance – “It is as it is. No use going down this track. No, I don’t want to do this anymore, but I long ago ruled out the alternative, so for now this is what I’ve got”.
Sometimes this is as far as I can go at that time, so I then use nurturing techniques and distraction to get me out of the mire of negativity that my mind wants to wallow in.
But, because I no longer have depression, I can usually also move on to thoughts such as “there’s got to be a way. There’s got to be an answer to all of this. One step at a time. Keep believing. Keep trusting”.
I have truly believed from day one that there are answers to all of what I experience. They may not come in the form of a magic pill, but there are answers. I just have to discover them.
Our own healing abilities
I’ve also come to believe in – and experience – the power of our own inner healing abilities. I believe we have powers way beyond our comprehension to heal our mind, body and soul. Occasionally I have caught glimpses of this innate ability, and I continue to search for ways to tap into them.
I believe things like meditation, yoga, mindfulness and other such mind-stilling practices are extremely powerful.
I have read books like Anita Moorjani’s amazing Dying To Be Me: My Journey From Cancer to Near Death to True Healing, and other such accounts of miraculous healing, and it has led me to believe there is far more to healing than pills, injections, chemicals, vitamins, herbs or bodywork.
There are so many things we just don’t know about yet. So many things we have no way to measure, and so, up until now, they have not been found, or at least have been discounted by the medical community. I suggest we don’t discount them.
If there’s one thing I have gained from my often-torturous and continuing journey with CFS / ME / EHS it is the willingness to be open-minded.
Nothing is too “out-there” or “weird” for me to try, because often these “weird and wacky” treatments have been the ones that have helped me the most.
I know the placebo effect is extremely powerful, and maybe in some cases it played a part. But you know what? I don’t care!! (and mostly I don’t think it WAS the placebo effect anyway, but who’s to know!)
If I feel relief of my symptoms because of a placebo effect or because of an efficacious treatment, does it really matter? The end result is the same.
And the fact that the placebo effect is about 33% effective, and often more, just shows the incredible power of our minds to heal.
It doesn’t mean the symptoms we were experiencing prior to the treatment were not real. It just means we tapped into something in our brains that triggered healing.
Nobody in clinical trials with cancer patients would suggest that those that healed or improved their symptoms were imagining their symptoms.
No!! They just believed really strongly, and something switched in their mind/body that triggered a healing response.
The placebo effect is actually THE most effective treatment across all clinical trials, so don’t discount the power of the mind to heal.
Also don’t beat yourself up if you haven’t managed to tap into that healing well. I haven’t yet either, but I do believe in it.
I don’t discount the messages in books like You Can Heal Your Life by Louise Hay, but I also don’t beat myself up if all my work in the way of affirmations, emotional healing and other such activities are yet to bring me to total health.
They have definitely helped me cope with the illness overall, which I see as a big bonus, but I also don’t think they are the whole answer.
I DO believe my positive attitude and optimism help move me forward day by day.
Even if it’s just an improved quality of life, isn’t that ultimately what we want – quality of life!
Whatever gets you through the night
I think of the above phrase a lot, and often say it to people. It’s my way of saying, whatever works for you to get you through this tough, tough illness and make you feel even 1% better, just do it.
If that means you’re doing things that are not ‘ideal’ for your health or that other people say you shouldn’t do, so be it.
None of us are perfect. We’re all just trying to get through this life as best we can. And when you have a chronic health condition like CFS / ME / FM / EHS / MCS it’s even harder to muster up the energy to do all the ‘right’ things for your body and mind ALL the time.
Overall I live a pretty healthy life. I don’t smoke, but I used to have the occasional puff 20+ years ago. I don’t get drunk, but I do have the occasional gin and tonic. I eat lots of superfoods and fruit and vegies and coconut water and lots of other healthy, healthy stuff …. but I do indulge in sugary treats a little more than I probably ‘should’.
This gig is tough. If something makes you feel even a little bit better for an hour or two, maybe sometimes it’s just worth doing – totally guilt-free.
I bet most of us live pretty clean lives compared to our ‘healthy’ compatriots, so if you have a few guilty pleasures, cut yourself some slack and just enjoy them. If they are not technically perfect for your body, they may well be nourishing your mind and soul, which I think are often even more important.
Balance is the key. Oh, how we all love the idea of that, and oh, how hard it is to manage it!
Nurture yourself in whatever ways you can, so that you’re always filling your bucket in some way to make up for the drain that the illness is on your physical, mental and spiritual resources.
My nurturing tools are: hot baths, reading (when I can keep my eyes open), listening to audio books (when I can’t keep my eyes open), empowering podcasts, listening to music, and yes, eating dark chocolate with a chai tea (reading that back, that is SUCH a pathetically healthy guilty pleasure!), meditation, yoga, spending time in nature … it’s a long list. See this post for more.
Hang in there
ME / CFS is a soul-sucking, confusing, debilitating illness that strips us of our sense of identity, belonging and meaning, but I’ve learned that there are also positive aspects to learning to manage a chronic illness such as we do.
I’ve learned to slow down. I’ve learned to have compassion and empathy for people in a whole new way. I’ve learned so much from this illness and my experience with electro-sensitivity. I’d love to be pain and fatigue free, and I believe that time is coming, but I also believe it all happens for a reason. I see many things when I look back that I wouldn’t have experienced, many people I’d never have met, and much joy I would never have experienced if not for this illness.
Stay strong my friends. There are answers out there, whether they be via medical science, natural health practitioners or your own innate abilities to heal. I believe the answers are different for everyone, but let’s support each other as we take on this illness together.
Support each other emotionally via social media or in person, keep believing in your ability to get through this and be well again – many have done so already, so we know it’s possible.
Hold onto that thought!
Keep Smiling (as hard as it may be!)
PS. I wrote a heap of posts a couple of years ago that might interest you – 31 Days to a Better CFS / ME Life (though I burned out at about 28 I think!)