July 8, 2024 - CFS Unravelled

Quick Navigation Show NotesTimestampsLinksTranscriptSubscribe and listen to the podcast on your favourite appOther ResourcesCheck out some other recent episodesCheck out some other recovery stories:Comments about this episode Subscribe and listen to the podcast on your favourite appShow NotesIn this heartfelt video, I share my decade-long journey supporting recovery from illnesses like ME/CFS, Fibromyalgia, and POTS. I discuss my personal experiences with recovery, the challenges faced, and how resilience plays a crucial role. Despite severe health setbacks, I emphasize the uniqueness of each recovery journey and the importance of maintaining a balanced perspective. Tune in for insights and motivation to help fuel your own path to recovery.TimestampsIntroduction0:00:00Can recoveries last after ME/CFS/Fibromyalgia/POTS/MCS/PVFS/long-covid?0:02:01Dan’s experience with recovery0:06:11Dan’s health challenges these last 6 years0:08:34Dan’s recovery resilience0:13:273 Take-aways about recovery resilience0:14:00Silver lining from my challenges0:16:37Apologies to all the interviewees0:17:14Recovery Resources & Final Message0:17:49LinksHere is a link to the ANS REWIRE program. TranscriptOkay, this video has been six years in the making. It gets a little bit personal here, a little bit of heart on my sleeve. Here we go. I've been supporting people with recoveries from this group of illness for over a decade now. And one of the things they tend to ask me about is my own recovery. Okay. My first response has always been that the question is inappropriate.Not because it's personal, but because it's not necessarily relevant to the person asking. And what I mean is that the way we all get triggered into the illness in the first place differs. Our recovery journeys are somewhat unique, even if common themes and strategies exist. Our challenges are often unique, or at least the way we experience them is unique. And so whether other people stay recovered or have relapses after their recovery, it's not an indicator of what you will experience. It's important to recognize that neither recovery nor relapses are passive experiences. I don't think they're spontaneous.Things happen, responses are made, actions are taken. These things shape our experiences. They shape what our body and nervous system experiences. Now before I share what I've been struggling with over the last few years, let me just say that the way I've thought about this whole recovery resilience has certainly changed.So early on in my recovery, I had a short relapse. I don't quite remember when this was. I think it was in the first year. I've spoken about it many times. I won't go into all the details what triggered it here, but I'll say it was sudden and severe. What was interesting was that after several days, I snapped out of my deer in the headlights response and I took some active steps.And what happened next? It really shocked me because I had a sudden and extreme reversal and recovered fully and really, really quickly. In fact, I think, you know, the whole thing was a bit bizarre. It really kind of challenged my own thinking of what was possible and even how I think about the illness.But even before this happened, I have to admit, I, I always felt vulnerable. When I recovered, I probably spent the first years kind of looking over my shoulder, waiting for the hammer to drop. And whilst fully recovered and being able to work full time, exercise normally, drink a little bit of alcohol or go nights with a little sleep due to travel or work or whatever, and even endure high amounts of severe stress, you know, lifestyle kind of life stresses.I still felt kind of vulnerable. As I spoke with more and more people who had recovered, hundreds of people as the years progressed, there was one meeting in particular that really challenged my way of thinking of what was possible. And that was my interview with ultra marathon swimmer Beth French. And let me say straight out that, I have views around endurance sports that may not be popular with everyone.In summary, I don't believe they're healthy for anyone. I think they're unnatural. And if you consider the original marathon runner, Pheidippides, well, that should be a big clue. But now, since I recovered, I've done all kinds of exercise, including very strenuous exercise, hiking for days in the heat, swimming long distances.Not marathons, anything like that. But, you know, swimming two or three kilometres at a time. I've played sports, including very intense sports. You know, the only thing that I probably never felt comfortable doing because it's part of the way I was triggered originally in my illness was heavy duty weight exercise.I just, I don't like that feeling now. But certainly I have exercised with weights. You know, that's why I'm so huge, right? But hearing how Beth exercised and trained without problems, it really kind of challenged what I thought was possible after recovery. Now, not everyone can push themselves like that.In fact, I strongly recommend against severe pushing. Um, like with endurance sports like that, not just for people with the illness, but for everyone. Others might disagree, that's okay. So, what about my own recovery resilience? Well, again, let me say that other's experience, it doesn't mean that much. So even if I was to be severely ill again and bed bound, it doesn't change the validity of the book, the program, and everything I teach.We have to understand how the illness works and the challenges around recovery and what we can do to negotiate all of that. And recovery is never from some magic cure. And even if people relapse, it doesn't mean that it didn't work what they did to get well. I say this because I think it's essential that we think about all this in the right way and that we don't have this black or white thinking.Or enough qualifying. Here's my experience. At the time of making this video, I first recovered from ME/CFS Fibro and POTS around 13 years ago. As I mentioned, I had a severe but very short flare up in my first year or so. Since then, I was fully well, able to live a normal life, normal work, normal sleep, food, exercise, you name it.I don't think anyone would differentiate me from a normal healthy person in any way. What was interesting is that I would say that, I've had a stronger than normal resilience against getting infections. In the first 5 years after my recovery, where I probably applied the learnings from my recovery more to daily life, I never got sick.I literally didn't even have a cold once. Pretty weird. I don't think I ever experienced that any time even in the years before I had CFS Fibro POTS. But since I've recovered, I've had three infections of note. The first one, my family came down with the flu. This is probably about five years after I recovered.And it was really severe. I mean, for a family that was all healthy and resilient, it was surprising to see us all in bed for the best part of a week. But it was interesting to note that the flu infection actually seemed to hit me the hardest. I had pretty severe pain and inflammation, in my assessment, worse than the rest of the family.The second was COVID. Now our experience for us, was that it wasn't as severe as the flu, but it was pretty unpleasant, especially in the first four days. Again, I would say that the pain and inflammation that I experienced was worse than the others. The third was a second COVID infection, which was much milder. The aftermath of the COVID infections, I was fine, uh, although the first time with COVID, I had a lot of breathlessness and it took about six to eight weeks for me to be able to exercise again. And it took about two or three weeks the second time around. Now to talk about my more recent health challenges. this. About six years ago, I had an emergency appendectomy. In hindsight, the surgeon suggested I actually had appendicitis two years earlier, which was misdiagnosed, and even though I had been hospitalised at that time. So, when it flared up again, it was very severe. I was in a pretty bad state internally. I had gangrene and I had severe inflammation in my abdomen way beyond the actual appendix.However, I was lucky to survive this, six weeks later, my checkup with the surgeon, I was back to 100 percent health. One week after that, I noticed a little pain in my abdomen. To cut a long story short, within a couple of months, I had such restriction of pain that I couldn't stand up straight anymore. I could barely have a shower.Now I'm going to spare you all the details, but to cut the long story short, after many tests, I was diagnosed with adhesive disease. Despite all my efforts to resolve this, I've only had limited success. The only recognized treatment is surgery, but of course that causes the problem. So there's a significant likelihood that it would come back, possibly worse, which could lead to bowel restrictions. So we're talking about life threatening issues and these problems have led to musculoskeletal issues. On top of that, I had a series of severe health issues that occurred leading up to the onset of the pandemic. These were very severe and included a failed vein in my upper leg, a collapsed lung from a botched treatment and a severe adverse medical event from extreme pain due to popped rib, which happens with these kinds of problems.And none of these issues were connected to CFS, POTS or fibro in any way. Despite ending up in ER and being urged to go several other times, I'm still here. I can't detail all of my experience because it's too lengthy and frankly, a little bit dramatic, bordering on the ridiculous.To give you some ideas, when all three separate health events that I mentioned here coincided and the ambulance was called, I actually broke up in hysterical laughter because the whole situation seemed so ludicrous. I mean, how could all of this happen at once? On top of this, in a perfect storm that life presents sometimes, there have been a number of other personal family challenges.Not unique to me, I'm sure. These things happen. It's part of life, unavoidable to some extent. I think this would have been difficult for anyone to cope with. But with these ridiculous health challenges on top, it pushed me right to the edge of what I could cope with. Not just physically, but also mentally.But I'm still here. And then recently, I tore my meniscus in my knee. I'd actually regained much physical function. I was able to play competitive sport, strangely enough. The worst thing about it was having to sit in an umpire chair at times, which would lead to me having to go home and lie down. Because in fact, sitting, crouching, anything that puts pressure on my abdomen is the worst for me.So that makes driving and travel very difficult, sometimes impossible. I must admit the strain has been difficult. I've been pushed mentally beyond my ability to cope many times. Often when my muscles are spasming at night, robbing me of sleep in my abdomen and my oblique muscles, I often only get two or three hours of sleep a night, sometimes for weeks.It's not like the CFS Fibro sleeplessness, because if I could lie down and not feel like my muscles were being pulled off the edge of my ribcage, I'd be asleep in two minutes. But, my ability to work has been impacted, which is why in the last five years my efforts have been prioritised to support people in the program with their recovery, with less time spent on podcasts and other advocacy efforts.You know, I have many interviews not published, many podcasts not published. Frankly, some of the joint efforts I've done with people I've felt terrible for not publishing. But the heavy topics that have been a bit too close to home for me to address. What I can say is that despite all of this crazy stuff in the last five years, I have not relapsed with CFS Fibro or POTS.And to be frank, I found this shocking at times. I'm not saying that I'm infallible or that I can't relapse. I'm just saying that I've been fortunate enough not to have that additional strain and what has already felt like untenable circumstances at times. So why am I sharing this? I'm hoping that you're going to get several things out of this video.Number one, recoveries can be very resilient despite extreme stressors. I've seen this many times with people. Even people with severe health challenges or severe life events get recovered and stay recovered. I've spoken to people that have been recovered for multiple decades, presumably their whole life.That of course doesn't mean that anybody is bulletproof or can't relapse. And it definitely doesn't mean that we should live a life of pushing excessively. Nobody should, regardless of whether they've had health challenges or been in perfect health all their lives. Unfortunately, we live in a culture where pushing chronically is considered the norm and no pain, no gain way of thinking.‘You can do anything’ way of thinking and we bombarded with these messages everywhere. Everyone is special. Everyone is the best. We must drive towards that. It sounds positive or aspirational, but I just don't think it's based in reality. I think it's a bit toxic. There's nothing wrong with living a normal, healthy life.We don't all have to be astronauts, Olympians, Nobel Prize winners. I hope you take what I'm saying on board and recognise that everything is okay, that we strive for and do as long as we do it in the right measure. And number three, stop measuring yourself by others’ experience. You know, I always dodged or qualified the question about my experience, not because I don't have a good story to tell, but because it's the wrong question.And realize I'm not talking just about staying recovered, but also about how you get recovered in the first place. I had someone ask me recently whether I solely did what was in the ANS REWIRE program to recover. Actually, I, I didn't do many of the things in the program because I either didn't know of them at the time or because they weren't relevant to me.The key is tailoring your recovery approach. It's not whether you or others recover quickly, slowly or relapse. It's about understanding how and why these things occur so that you can do what you need to in order to be healthy and enjoy your life. So, there you have it. It wasn't easy for me to talk about all these things, but out of this terrible time that I've been experiencing, I felt there was this one positive message that I want to share with you all.And that is that recoveries can be resilient. And whether you're facing ME, CFS, post viral fatigue syndrome, fibromyalgia, POTS, or any other chronic condition, remember, your journey is unique. And so is your path to resilience. I also wanted to take a moment to say sorry to all the wonderful people who've helped me to create wonderful content with joint projects and interviews, sharing their stories.I feel I've let you down by not publishing these in recent years, but with the limited resources I've had, my focus has simply been on helping people that needed it directly. I hope you can forgive me for that. And my hope is that I will find the capacity to share these wonderful stories and resources and create more content for the channel.In fact, I'm trying to do that right now with shorter videos like this. So I hope to share more of these kind of insights with you and so to ensure that you don't miss out, please make sure you’re subscribed and that you're getting notifications. I'd really appreciate a like on the videos that helps others discover these videos also. If you haven't been following the channel long, check out some of the existing videos and podcasts and the wonderful recovery stories. There's heaps of content to help you accelerate your recovery progress. Also, you can download my free eBook Discover Hope using the link in the description.I hope you found this video helpful. I would certainly appreciate a comment below to hear your thoughts. Thank you for spending your time with me today. Remember, life has its ups and downs, we never know what's around the corner, good or bad. So, make the most of every day that you have and one way or another, we're all in this life together.Let's do our best to help each other. I hope this video helped you in some way to make your day a little bit better and to help fuel, your recovery motivation.Other ResourcesCFS Unravelled is the book that started it all, outlining the explanation for the pathogenesis of ME/CFS, Fibromyalgia, POTS, MCS and related syndromes and explaining how recovery is possible.Learn more HERE.All my email subscribers receive additional FREE resources like my book Discover Hope. So consider subscribing and reading the book to rediscover hope.To learn how other people recover, listen to the recovery interviews!If you would like to learn more about the ANS REWIRE program, check out the 4 free intro lessons or visit the ANS REWIRE website.Check out some other recent episodes@media (min-width: 300px){[data-css="tve-u-668652249e2749"].tcb-post-list #post-13671 [data-css="tve-u-668652249e2754"]{background-image: url("https://cfsunravelled.com/wp-content/uploads/2024/07/Podcast-episode-20-o-300x300.jpg") !important;}[data-css="tve-u-668652249e2749"].tcb-post-list #post-13671 [data-css="tve-u-668652249e2767"]:hover [data-css="tve-u-668652249e2754"]{background-image: linear-gradient(rgba(255, 255, 255, 0.08), rgba(255, 255, 255, 0.08)), url("https://cfsunravelled.com/wp-content/uploads/2024/07/Podcast-episode-20-o.jpg") !important;}} Episode 20: Snippet – How resilient can recoveries be after ME/CFS, Fibromyalgia, POTS, MCS, PVFS (or long-covid)?Episode 20: Snippet – 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