To the Person Newly Diagnosed with ME/CFS

It may seem like ME/CFS has robbed you of the satisfying life that you once had. But don’t despair! Life has changed, but it isn’t over! And there is hope! Managing the illness well can lead to substantial improvements and even recovery for many! And the earlier you learn how to manage it well, the better chance you have of a full recovery. Good management can be challenging though, so let it be your primary goal for the time being. Like me, most people learn through lots of trial and error and make lots of mistakes so I’d like to share the most important first three things I learned about coming to terms with living with ME/CFS!

Allow yourself to Grieve!

Good illness management only really happens once we accept that life has to be lived differently for a while. Recovery is rarely quick, and holding onto your pre-illness aims only gets in the way of the adaptations you need to make in order to give our body the best chance to overcome this illness. We need to allow our feelings of sadness and anger over what we have lost, to flow. When we can accept those feelings as a natural part of coming to terms with the illness and allow them to be free, we reach an acceptance of the illness. This acceptance isn’t resignation. Positive acceptance recognises that there are many ways that we can learn to adapt, many things that we can do to give our health a better chance, and many new happiness skill that we can learn to replace the things that made us happy in the past. Grieve what you have lost, then remind yourself that a different life can still be a good one!

Don’t fight the illness… Outsmart it!

When faced with devastating adversity, often our first impulse is to fight. Many of us think that if we fight this illness hard enough, we will overcome it. So each day we push ourselves to be a little better than the day before. Unfortunately ME/CFS doesn’t work like that. Pushing yourself is the worst thing that you can do. My first 6 months of this illness I fought and I pushed, and I got worse and worse until I grieved, accepted and learned to listen to my body.

Instead of fighting, we can outsmart the illness. By understanding the illness mechanisms we can work towards helping our body tackle them. The most important thing to understand is the ‘energy envelope’. Each day we only have a certain amount of energy available to us and that amount can seem to mysteriously change from day today. We need to learn how to recognise how much energy we have and make sure we don’t use it all up. We need to save some for our body to use for healing. If we use all our energy or try to use more than we have, it takes our body too long to recharge and we crash. To avoid a crash we need to learn to recognise when we’re having a lower that normal energy day, and recognise how things like stress and infections can take away a big chunk of that energy and cut back what we do accordingly. It’s a difficult learning curve, but all that determination to fight can be redirected towards the aim of outsmarting the illness! One of the most helpful pieces of advice that I ever had from a doctor was to do everything at only 50% effort. Staying relaxed and not pushing is one of the best ways of keeping within our energy envelope!

Keep hopeful of better health but don’t put your life on hold until you get there

Overcoming ME/CFS takes time and attention. Hope for a better future will motivate us to take the kind of care we need to take with our bodies. However, when we lose all the things that used to make us happy we need to replace them. If we hang around and wait until we are better to enjoy life we’ll soon lose motivation because the rewards can be slow in coming and we will encounter many challenges along the way. And hanging on to wanting the things that we can only have when we are better, will make us impatient and spur us to push beyond our energy envelope, leading to the boom and bust cycle that prolongs the illness.

We need to learn new ways of being happy that are possible within our new restricted limits. We need to find ways of making rest pleasurable. We need to find other ways of expressing our selves and being creative that fit with the new way the illness constrains us. We need to rise to the challenge of living life for today in a totally different way! Can you meet that challenge?

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