It’s only been a few weeks into 2017 and I feel I am definitely on the path to beating last years record of helping people return back to work! Rachael, has spent in total, 6 hours at the studio, over 3 consecutive weeks and has gotten rid of all pain, fatigue and POTS! This is after being diagnosed with Chronic fatigue syndrome and postural orthostatic tachycardia syndrome and suffering for 4 years.
I am always impressed with the amount of effort, education, and determination that clients put into their recoveries. However, Rachels success story holds a special place with me due to the sheer quickness of her recovery. Normally, I work with ME/CFS clients for about 8-12 weeks, focusing first on their recovery and then focusing on their self-sufficiency, so that they don’t need to come and see me again in the future for any “Top-ups”.
Over the years and with the sheer volume of chronic pain clients I’ve worked with, I’ve managed to really refine and tweak our programmes for chronic pain, and in turn, it has allowed me to pump-out chronic pain recovery story, after recovery story. However, when first working with those with ME/CFS it soon set off one of the biggest and longest learning curves of my entire career! In which, have more than likely changed my mind on what I though ME/CFS was at least half a dozen times in my career. I have been right about a lot of things as the evidence and research would later confirm, however, I’ve also been wrong about a lot of things. What I enjoy about my job is that when I work with clients towards recovery, its not a fixed set of steps, more like a framework that gets adapted to the individual. This over the years has come in very handy, as with not being married to any 1 approach, has allowed me to remain very unbiased in my approach to working with complex conditions.
I often find that my clients with ME/CFS differ a lot from my chronic pain clients, not so much in terms of what is needed to recover after all I’m still working with an individual and not a disease, but rather the other overwhelmingly external factors that come with the diagnosis. Personally, I feel that with ME/CFS being so invisible, and with many people still being able exercises(although not most), it has created a very large stigma around the illness or the perceived faking of illness by the rest of the world. I can understand the need for validation that one is not making up their symptoms, as I have been in the same situation years ago and never received an official diagnosis, but instead, was left to constantly try and prove that what I was feeling was in fact real. However, after diagnosis, it can potentially lead to a very toxic illness identity, not for all though.
Having fought for so long for validation that something is wrong, suddenly the thought that people perhaps could recover is a very hard barrier to break down, as it has a lot of social consequences if it is broken down. I myself have been at the end of this particular stick after my own recovery, with delightful comments like “Oh, so you weren’t really ill” or “well if you’re better now then you couldn’t have been that bad”.
I have, over the years, made note of negative comments on Facebook posts and blogs, and generally speaking, it is from the people with a diagnosis of ME/CFS. Now, this may be from the reasons above, it could be because those with ME/CFS are more likely to research their conditions, I honestly don’t know and more than likely never with. But, as I write this I am certain there will be many negative comments underneath it in the months to come. However, just know that I do believe you when you say you are in pain or fatigue, its just that my views as to why that differs a lot to your own view. There have been many in the past who have reached out via email or phone call and said “Bull Shit” to recovery, and I had invited them down to the studio to have a chat. Out of the 6 that actually took me up on my offer, all 6 have made recoveries within the year. One woman was so persistent that it was bull shit that I actually offered to pay for her travel, hotel, and to do her entire recovery program for free, in return for a blog from her once she was recovered. I think that’s a very fair deal, however, she blocked me from contacting me and deleted the twitter thread of be offering to pay for everything.
You can have your beliefs about ME/CFS and I can have mine, that’s fine, it’s a normal part of being a human. I won’t attack your beliefs, however, I may gently dismantle them when you work with me, and in turn it with help you to see why you have been stuck in a hole for so many years………but I won’t attack them.
So, as you read this, I ask you for the same courtesy.
As far as clients go you could not ask for a better client! Rach is an incredibly positive person, shes ditched the label a long time ago and has been educating herself, and she does everything you could ask of her, including cold showers every day. I personally feel that a big part of CFS recovery requires some cold water therapy for getting the oxygen into the system and for helping to recondition the autonomic nervous system, especially for those with hypermobility syndromes whos blood vessels need a little help with vaso-constriction.
All in all, though, even I was surprised at how quick this all happened.
Rach was an absolute pleasure to work with and I can happily say that one of her biggest worries with her CFS is gone. Rachael gets married in a few months and both her and her mum have had the worry that she may not be well enough on her big day, hanging over their heads for a long time. But, as she now doesn’t have any leg pain keeping her awake at night, she can actually sleep properly now and recover. With the dissipation of POTS symptoms (which often does once the nervous system starts working properly), she can now be confident to walk now the aisle to get married without the fear of passing out. We kept a pain and fatigue diary over the last 3 weeks for each, and we got to watch her fall from 8/10 on both pain and fatigue, to 0/10. Sadly, I don’t have an awesome video of Rachael going from crutches to running like I do with other clients, due to the invisible nature of ME/CFS. As I’ve said many times before and will continue to say so, working with people, and not the diagnosis, gets results.
Pain science, CBT, meditation, acupuncture, etc, it all has its place in a recovery I suppose. However, pain and fatigue are complex, due to the complexity of the individual and more so the many Biological, Psychological, and Social factors that mediate and create pain and fatigue in the first place. If people want to recovery, then the approach needs to be adapted to that individual, and that individual only. Graded exercise therapy will not work for most with ME/CFS, as it’s akin to building a house without laying a foundation down beforehand. Yes, you may get a few bricks up, but eventually, it’s going to come crashing down: or perhaps a better word would be relapse.
So, here is to Rachael, she worked incredibly hard, she always had a smile on her face (heck, you even cheered me up a few times) and now you get the reward of being able to walk around the mall without ending up in bed the next day, and you got you life back. Plus you have also set a new record by getting to 0/10 in only 3 weeks, and I bet that doesn’t happen again anytime soon!
For those of you reading this, I will leave you with a closing few words.
We touched briefly on beliefs, and you may very well have some cognitive dissonance going on right now. But, ask yourself this, are your current beliefs helping you? If the answer to this question is no, then they need to change.
As always, feel free to comment, call bull shit, ask questions. I don’t block or delete comments as it just reaffirms the points I’ve made above, and if a reply help just one person change their belief system around recovery, then its worth all the negative one. You could also call me on my mobile if you’re genuinely interested In working towards recovery, I don’t mind spending an hour to chat with you if its going to help.
Take easy readers
Want to see more recovery stories from those diagnosed with ME/CFS?
Hedda (she flew in from Norway!) – https://www.thefibroguy.com/client-success/hedda-eds/
Steve – https://www.thefibroguy.com/client-success/steve-me-cfs/
Steph – https://www.thefibroguy.com/client-success/steph-me-cfs/
Catherine – https://www.thefibroguy.com/client-success/4991/