Today, May 12th, is ME/CFS international awareness day. This illness is very misunderstood by the general population and even by a huge proportion of the medical profession and funding for biomedical research that could promote that understanding is horrifically scarce. Nevertheless, there are some tireless and compassionate researches out there who have seen the suffering caused by this illness and are bit by bit building a better understanding of the medical nature of this condition, some even experimenting with potential treatments. Many people will be using today as an opportunity to campaign for more funding in research. Although this is absolutely essential, I want to raise awareness in a different way.
My journey with this illness has been all about acceptance and adaptation, learning to have the best possible life despite the illness, making the proverbial lemonade out of life’s lemons. I’m so damn good at it that I’ve turned that into my profession, but when you look at the results, that I’m contentedly living a relaxed and idyllic life in a beautiful area of the world, it can be easy to ignore the size of the challenges I’ve overcome.
The skills I’ve learned and have to rely on daily, are not easy to learn, and without them life with ME/CFS can be horrific. So instead of campaigning to get more invested in somebody one day finding a cure, my approach has been always been to help people make their lives less horrific in the meantime. Your understanding and compassion could play a big part in supporting a person with ME/CFS to lead the happiest healthiest life that they can while they wait for that elusive cure. I know the difference that it makes because I’ve been lucky enough to have people that care about me do their best to find that understanding. I’ve also seen the pain and the extra struggles caused when loved ones just can’t get their heads around the illness and sufferers don’t get that much needed support.
So just what exactly is involved in being able to be as happy and healthy as possible when your life is indefinitely ripped away from you by the severe limitations of an illness that zaps your energy, causes you difficult to treat pain, makes it difficult to think and concentrate, brings you all kinds of digestive distress and unusual sensitivities, makes it difficult to sleep even when you’re exhausted and makes you oversensitive to any kind of stimulation? (And these are just a few of the symptoms!)
Put very simply it involves having the emotional strength to grieve all that you have lost, let it all go along with all worries about the future and live in the present moment focusing on all the tiniest moments of joy that can be found. Can you imagine having to give up life as you know it including all your goals and dreams and accepting a life that’s only a fraction of what you have right now?
It also involves finding the motivation to spend at least half your day investing in great illness management such as gentle effortless movement, lots of meditation, careful diet, careful pacing of any activities, lots of quiet and rest and actively paying attention to cultivating low energy happiness skills so that the heaviness of life with this illness doesn’t overwhelm you and drag you down. Think of the kind of discipline it takes to go exercise regularly and eat healthily then times it by 10!
It involves holding back on your good days, because when we feel a little better, we never have enough energy to do what we want to do to make up for how little we’ve been able to do up until now, but if we do too much we crash and can be worse for a lot longer.
It also involves developing a thick skin to those who are going to choose not to believe what you are going through and judge and push you in ways that are only going to damage your health further. It involves learning to say no and let go of the people who don’t want to listen to that no. And don’t forget all this has to be done when you only have a tiny amount of energy, and have difficulties thinking and concentrating to boot.
I help people to do this because I don’t want them to suffer and I know that it can pay off. But it’s a big demand. It would be so much nicer if we could trust medicine to take our ills away, but so far we just can’t!
A small favour: I’d be very grateful if you could rate this post using the stars below the related posts. Thank you x
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