“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.
If you are unfamiliar with CFS Unravelled, please watch the VIDEO EXPLANATION to put this blog article into appropriate context. ME/CFS and Fibromyalgia Syndrome are REAL PHYSICAL illnesses, but the psychological aspects are only discussed in the context of creating a healing environment and addressing autonomic nervous system dysfunction.
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 practising 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;
Easier said than done! I know you point this out, but the concentration and determination needed are difficult and why we fail. I’m not looking a silver bullet, just for it to ve a bit easier!
Its an excellent and valid point Rosemary. That’s why I say that people shouldn’t beat themselves up for not getting their straightaway. I remember when I started my recovery, all the mental techniques including meditation were a complete disaster for me. I hope that when I finally finish my video series that it will make things a bit easier for you all.
Dan – I love this article, really inspirational. I am getting there, but keep having some new symptoms flare up, as well as older ones. I realise also that I have quite a few emotional issues / patterns underlying the condition which are also taxing my body and immune system. I take your point about the importance of HAVING A PLAN, AND GENTLY STICKING TO IT. Clearly this is key, but at the same time, symptom flare-ups and emotional ups / downs can make it hard to be consistent.
Hi Jesse, glad to hear of your progress. Yes, it’s a bit of a challenge and we are not always consistent, that’s OK. It’s just about being consistent most of the time. Remember, we don’t have to do things perfectly. When we fall back, get straight back on.
As we recover, we sometimes become more aware of underlysing emotions and issues, things we couldn’t even recognsise whilst we are in such a tailspin with all the symptoms. That’s OK, we deal with things as they present themselves. It’s about progress, little steps, not perfection!
Keep at it! 🙂
Hi Dan, my heart cannot express enough gratitude for your website and book that comprehensively explain CFS and the underlying body/mind mechanisms that perpetrate it! Thank you!!! I am in my second year studying Psychology at Sydney Uni (part time ATM) and have just finished a semester studying Brain and Behaviour. It was interesting to learn about stress and the many abnormal adaptions the body makes when coping with it- one of which was CFS! I was impressed with the parallels you made with prolonged stress and it’s impact on the ANS and subsequent disfunction as the underlying cause of… Read more »
Thanks for your heartfelt comment!
My initial diagnosis was “Fibromyalgia” and all that did was give docs the license to medicate me with a dozen or so drugs, amongst them, Elavil, Effexor, Neurontin, Paxil; and Baycol Vioxx and Zelnorm, being three drugs PULLED from the market, with only Zelnorm returning with a Black Box Warning. If doctors had ONLY done the proper testing of blood and urine, they’d have found what it took me 20+ eyasr to find, I had undiagnosed LYME with Babesia and b.burgdorferi co-infections and a hyperactive thyroid which turned into cancer. I am here to WARN others, to DEMAND of your… Read more »
That’s quite a post!
I hope the explanation and insights in the videos and books help you in your journey of recovery.
Remember to treat the cause not just the symptoms.
Thank you for this article, Dan, food for thought. It is confusing thou as to how to balance different aspects. Not to focus on symptoms but at the same time don’t wear yourself out. If I didn’t focus on symptoms at all I would get up and attempt to rush through the day pretending thrre was nothing wrong with me ( I can sometimes do this) but I will ultimately become exhausted…no denying my physical limitations on that score. Sometimes I think I get this and then I get confused and feel that I am fooling myself. I have had… Read more »
Yeah, it’s a bit of a juggling act.
It’s a bit easier when you have some momentum behind you and are making significant progress.
Thanks for your comment Patricia
I was diagnosed with Fibromyalgia Syndrome around 1998. My sister has it and so did our Mother. Our mother also had Lupus erytheatosus (i think that is the correct one) and Sjogrens Syndrome. I have had 2 positive ANA blood test but was told since I don’t have any other symptoms, I am testing positive because I am my mother’s daughter. I have also had back and neck problems for many years (disc) I guess according to my mother, I have a high tolerance for pain that I inherited from my father. Sometimes I don’t even realize I am in… Read more »
Hi Sue, it sure is a rough ride and it’s good for you to get things off your chest. Let me clarify with you that you are NOT ‘pathetic’. You are an awsome warrior! Few people could endure what you have and still be going strong (even though I imagine it doesn’t always feel that way). If you saw a previous blog, you will see me explaining that there is no cure for ME/CFS/Fibromyalgia. However, the way the illness works, whilst not being widely agreed upon by the medical community, is pretty clear in my opinion – hence the video… Read more »
Sue, It is very hard to not believe what docs and others tell/imply to you. I have a very hard time with guilt and other negative feelings about myself also. I try and try to tell myself that there is remission for physical and emotional symptoms of my illness. I try to tell myself that i am strong, NOT pathetic. If you were pathetic you wouldn’t be here fighting for a semblance of your life back would you. Have you had a Western Blot test for Lyme from a Lyme Literate MD. When I found out that I have Lyme… Read more »
Dan, this is such a great article. Thank you for putting it out there!
Thanks Katie xx
Thanks for posting this. i enjoyed reading it. I’ve been diagnosed with CFS/ME this year. I’m only at the beginning. Seems daunting thinking that people struggle for years with this. I’m pleased there’s more people who understand rather than thinking its made up. Not that I would wish it upon anyone. Professionals don’t really understand they just think they do. I’m trying to get my sleeping right sleep at night n awake in the day. It’s hard this with insomnia. Theres questions I wonder where the answers might help. but theres always that grey area that no one knows how… Read more »
Thanks for your comment Jess – look – those strategies you are looking at might certainly help, but you have to go beyond symptom treatment to make a real lasting change. Your insight into the root cause of the illness serves you well, but the stress is subconscious and you need to break that cycle. Have you watched the video explanation yet?
Very clear and very true (if a tad tricky to get a foggy head around!)
Well worth sharing! 🙂
Done! 😀 xo
very interesting. I was diagnosed with fibro 2yrs ago, but I have SO many other cdtns too. I’m seeing a geneticist next week tosee if I have ehler danlos syndrome. All my cdtns are symptoms of EDS and fibro is a linked cdtn. I will definitely read more of your blogs,very interesting reading. I’ve already done the cutting out negative people from my life, being kind to myself, trying to avoid stress as much as possible, eating healthy (no wheat,no gluten, no eggs, no shellfish, no soya, no pork…..all coz of allergies and intolerances.) BUT I’ll see what elseI can… Read more »
Thanks for your positive feedback Vicki.
The explanation videos are short and to the point, so you might like to check them out.
If that resonates, there are more in-depth resources on the ANS REWIRE site with the free introductory series. I felt it answers some key questions, hopefully you will agree. 🙂
Dan, I have been sick for 2.5 years and went back to rock bottom at the end of April and left my job. ..I month after that I found neural plasticity I have only done a month…but huge shifts..this will save my life..
I was at the end of my rope before finding this..
I am glad to hear you have turned a corner. Did you enrol in ANS REWIRE?
——– Thank you, Dan. I work with the following strategies: 1. calm down the ANS with special visualisations, meditation, music,anxiety-reducing-cognitive-strategies (negative-thinking-reduction),… before/during/and after stressful situations in the day. it is not enough to do it once a day without any connection to overstimulating situations. I do these exercises WHEN STRESSFUL THINGS HAPPEN, directly BEFORE DURING AND AFTERWARDS! 2. in combination with a correct pacing as described on http://www.cfidsselfhelp.org/library/topic/Energy+Envelope+and+Pacing I can stabilize strong symptoms! most important was the strategy of “Pre-emptive rest”! so I rest before and after stressful events, lie down, and do – if possible – relaxation exercises. when… Read more »
Fully commit.Plan.Be determined. Persist.Start again when you slip up. Praise yourself when you get it right.Customize the approach when something isn’t working for you. Measure your functionality for comparisons. Question your thoughts (is that really true?) Make every choice the best choice for you. Envision your new life. Hit replay. Hit replay again, and again.
Thought provoking blog post Dan!!
❤️ 😀 🙏🏻