Why are others recovering from ME/CFS and Fibromyalgia and not I?
“I feel like I am doing all the things I am supposed to do, but I am still not getting any better! Why are THEY recovering and not I?”
I think only someone that has or has had ME/CFS or Fibromyalgia Syndrome can really understand this cruel emotional roller-coaster.
It seems that some people initially find the recovery interviews with people who recovered from ME/CFS and/or Fibromyalgia uplifting at first, and then later they find themselves getting more and more upset and frustrated. “It’s like getting salt rubbed in the wound!”
“Ah yes, recovery is possible, just not for me.”
“I am missing some secret ingredient.”
“I am not doing things quite right.”
It’s only normal to get frustrated, even angry and say,
“it’s all a bunch of rubbish, it’s not possible to recover from ME/CFS/FMS”
“THEY didn’t have the real ME/CFS/FMS.”
Over the years, I have seen many people’s efforts to recover frustrated. I suppose I was one of the lucky ones in a way. Whilst I had spent many years trying to recover (and failed miserably until I gave up), it wasn’t really until I worked out how the illness works that I made a proper attempt at recovery, and even THAT journey was more than a little bumpy. But I got there. It took around 12-18 months of concerted effort, but I got there.
“A PROPER attempt” – what does THAT mean? - Let’s hold that thought for a moment!
If you have been looking at the people who have recovered in the recovery stories, you will probably notice many commonalities. Most people looking for answers, look for ‘what they did to recover’, as opposed to HOW they did it. For many of us, part of us is still looking for that magic bullet solution, a treatment – I was no different really – it’s only natural.
And whilst many physical treatments and strategies are helpful and important, the psychological aspect of the illness is where most people actually struggle.
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But there are other commonalities besides the strategies they used, that I think are critical:
- Determination & ability to apply strategies with DISCIPLINE
- Applying the right strategies, knowingly or unknowingly
- Change to their outlook and how they engage the world
Hmm, suddenly looks very similar to my previous blog doesn’t it? That is no coincidence.
It strikes me that where people go wrong is that they often think they are applying the strategies, but they simply don’t do it strictly enough.
Or, they don’t even realise that they are not applying the strategies. For instance, one of the key strategies (the main strategy that various recovery programs are based on), is to interrupt the thoughts and attention to symptoms. This is an important part of anyone’s core strategy on their path to normalise their ANS. However, many people don’t even realise when they are focussing or thinking about their illness or symptoms, because this has become such a dominant part of their lives. So even when they think they are consistently doing this strategy, in reality they may not be.
This is not surprising, because whilst they probably never focussed on illness and symptoms in their past, the illness is just so SEVERE, that it becomes somewhat overwhelming and often all-encompassing in their lives.
This is another reason why other mind/body techniques such as meditation are so important, because, they allow us to become conscious of our triggers and gain a more objective perspective.
Other triggers often disregarded are the unhelpful thought patterns we experience. Because the way we engage the world, is usually been the same for many years, if not most or all of our lives.
These psychological aspects that affect our behaviour also influence other illnesses, not just ME/CFS and Fibromyalgia Syndrome. If you have an overweight stockbroker who only eats fish and chips and beer and stresses out all but the 4.5 hours he sleeps, then when he has a heart attack at the age of 38, it takes some time for him to adjust his personality to create a healing environment that supports his health. He might change his personality, but of course he is still the same guy his mother loved since he was a baby!
So triggers like eating a certain food, or smelling perfume or petrol, are often given more recognition as symptom triggers. People are quick to start avoidance strategies, which in themselves actually strengthen the neural dysfunction.
But most of us also have more subtle triggers that are not as easily identified, such as how we think about our place in the world or how we are affected by the important relationships in our lives. These are often not addressed or even considered, AFTER ALL, “THE ILLNESS ISN’T IN OUR HEAD YOU KNOW!”
It always amazes me how defensive people get when we discuss the psychological aspects of the illness, even though they clearly identify their inability to cope with stress.
The division between our physical body and our mind are still too great in western culture, despite the clear evidence of modern medical science. This is where a good coach is helpful, to help us stay on track and identify the triggers that need addressing.
In CFS Unravelled I laid out a framework for recovery, which included addressing the physical and mental triggers through a variety of strategies. Regarding the mental triggers, whether people use EFT, NLP, CBT, Meditation, Prayer, or whatever other modality or strategy to rewire their nervous system, is up to them. As the recovery stories show, there are many different ways that people achieve their recovery.
But in the end, the key reason why most people are not achieving the results they seek is simply because they are not applying the right strategies consistently. I have seen people buy all kinds of programs and attend all kinds of seminars/workshops, all resources I wish I had had when I was sick, but still not produce results. Why? Well, not always, but certainly more times than not, it’s simply because they don’t apply what they have learned consistently in conjunction with their other strategies. As Lynn explained in her interview, “make every choice your best choice”.
One of the key concepts to realise about neural plasticity is that neurons that fire together, wire together. The key here is repetition. And for hours, days, months, even years on end, people’s nervous system continue to be conditioned to have their ANS dysfunction.
Obviously, in the onslaught of such consistent conditioning, we need an equally consistent and PERSISTENT approach to RE-CONDITION the nervous system. The people who are ‘lucky enough’ to recover, usually made their luck by being completely committed to following through and practicing the techniques they have learned and making the required changes to their lifestyle to create a healing environment.
If you feel your past efforts have not been good enough, please don’t beat yourself up. Seriously, take it from me that you need to give yourself a break. Not only had I failed so many times that I eventually gave up, but even when I knew what I was doing, the road to recovery tested my resolve on several occasions.
Be kind to yourself! You have to recognise that merely coping with the illness as well as you have, is an amazing testament to the human spirit. So talk yourself up, speak to yourself with kindness and encouragement, not blame or criticism!
It is no coincidence that people often hit rock bottom before they recover. It’s not a requirement, but in order to make the consistent change, you need to be SUPER motivated. You need the unrelenting determination of a sporting champion. It’s usually a case of “there is no other possible outcome, I will gently keep going until I get there”.
Most of us think we don’t have it in us, otherwise we would all be sporting champions, right? But actually, it is just a matter of motivation. Once enough pain builds, once we can simply no longer accept putting up with the illness, we finally become prepared to DO WHATEVER IT TAKES.
But unfortunately, most of us don’t always demonstrate our determination, because a mix of being able to more or less cope most of the time and having a low degree of confidence that the effort will produce any results anyway, is enough for us to only make half-hearted attempts.
So what has to change?
In the end, that is one of the few things you can have some control over in your life.
Learn enough to become 100% convinced it will work, and to know what you must do. Learn the distinctions. Do it your way if you feel you must, but listen to those that have done it before you. One of the greatest concepts in human achievement is modelling. Don’t try to invent a way to hit the ball like Tiger Woods, get him to show you and coach you, to do it exactly the same way. How else do you think movie stars manage to learn such amazing skills? They don’t dabble, they model the best!
Hitting rock bottom and becoming desperate is not a strategy, but when you can get the same level of determination, the same mental shift to say “enough is enough”, then you too can start applying a mental discipline that you may not have previously demonstrated in your life.
Recovery from the illness is probably going to be the most amazing achievement of your life. But it doesn’t have to be ‘impossibly hard’ and you certainly DON’T ‘have to do everything perfect’. But you do need to be persistent and have a plan!
There are no guarantees of course, the illness is complex and sometimes other physical strategies also need to be fine-tuned. But IF you have been DOING YOUR BEST for 6 months without results, chances are you are missing a big part of the puzzle.
The question you have to ask yourself is this;