September 13, 2022 - CFS Unravelled

Recovering from ME/CFS, Fibromyalgia and POTS is far from straight forward!In this interview, Shannon tells how she recovered from fibromyalgia, ME/CFS and POTS after 7 years of illness. It took her 2½ years, with her actually worsening before she got better after she enrolled in the ANS REWIRE program.This interview captures her journey. You can also check out the podcast show notes for a collection of her video journals that captured her story which makes for a fascinating watch. Quick Navigation Video of Interview:Timestamps:Links:Transcript: Video of Interview:Timestamps: Introduction - What If recovery isn't going well 0:00:00Podcast Disclaimer0:01:51Meeting Shannon0:02:33Shannon's experience with getting diagnosed and prognosis for Fibromyalgia0:03:37Medical emergency that led to onset of fibromyalgia0:05:57We explore the year leading to the onset of the illness0:09:03Shannon talks about her experience with depression pre illness0:10:52Shannon discusses her early emotional experience with Fibromyalgia0:13:15Shannon talks about being bedbound and the idea of 'pushing' through to recovery0:16:09Shannon tells of positive strategies that helped but didn't lead to recovery0:17:25Shannon's symptoms and experience of Fibromyalgia & when she thought she may not survive0:19:02How Shannon's family and friends reacted to her illness0:22:58Illness frustration and onset of POTS and illness worsening & connection to PTSD0:24:03How ANS REWIRE supported her when he condition suddenly worsened 0:29:41Dan talks about dark times in Fibromyalgia, CFS and POTS0:31:37Shannon talks about how she used brain-training strategies for anxiety0:32:59Shannon talks about how her CFS Fibro POTS recovery evolved with ANS REWIRE0:35:27We talk about belief in whether we can recover and the video diary that Shannon shares0:37:37Dan and Shannon talk about the lessons of ANS REWIRE on how Shannon applied them0:40:17Shannon talks about what allowed her to persist to recover0:45:05We discuss the experience of brain fog and how Shannon re-engaged mentally as she recovered0:47:14What Shannon thinks is the most important thing for CFS/POTS/Fibromyalgia Recovery0:50:11Dan talks about the importance of tailoring our approach for recovery0:50:55Shannon's life after recovering from Fibromyalgia CFS & POTS0:52:17Links: Here is a link to the podcast show notes where we published her wonderful video diaries.Transcript: Dan Neuffer Intro: If you’ve been listening to chronic fatigue syndrome, fibromyalgia, and POTS recovery stories, you may feel encouraged, and you may have reconnected with hope.But what if your recovery hasn’t panned out the same way? Do recoveries happen fast? What if they don’t? What if you actually get worse?Not only will you hear about how someone goes through that rollercoaster, but Shannon also shares how her illness actually got worse after enrolling in the ANS Rewire Recovery Program and how she turned that all around.Even more interesting is that she captured her journey through a series of video diary entries. She shares these via YouTube, but you can simply visit the CFSUnravelled.com Podcast page to find this episode and watch these fascinating moments in her journey.During her 2.5-year journey of recovery, she seemed to try and present a brave face – an optimistic outlook. But I think the videos speak for themselves. She was clearly struggling, yet she persisted. She focused on positive steps, and she eventually experienced a solid recovery.For those of you in the program, please also check out the Insights portion of the interview when it becomes available. I hope you are inspired and that you gain many insights from this wonderful recovery journey. Particularly, I really look forward to your comments about this series of video diaries.Here’s my interview with Shannon.Dan: I’m very excited today to speak with author Shannon Esposito who actually used the ANS Rewire Program to recover. It’s a particularly interesting story because she managed to capture her story with short video snippets along the way. It was a bumpy journey.Welcome, Shannon! This is your recovery interview!Shannon: It’s nice to be here, finally!Dan: Before we started, you said you maybe felt a little emotional.Shannon: Now that I’m here, it’s finally hitting me that this is real. I’m recovered!Dan: Yes, it’s lovely!Look, we’ll talk about your journey, what happened, and how you became ill, but let’s have a look at a little bit of that note. When you first became ill, what were you told about the possibility of getting your health back?Shannon: I wasn’t told anything. Nobody had really any idea what to tell me. I basically did a lot of my own research and figured out that people stay sick for a long, long, long time, and I may never get my health back. That’s where I started.Dan: Did you ask your doctor?Shannon: Yes, but there’s no cure. They can try to help you with your symptoms. That’s all he could do.Dan: Did he talk to you about the idea of recovery or remission? Did you ask him specifically? Or did it just not come up?Shannon: My doctor actually sent me to a rheumatologist fairly early.The rheumatologist diagnosed me with fibromyalgia and told me to keep exercising. When I burst into tears because I could barely walk and he’d just told me to keep exercising, he told me to get back on an antidepressant. That was my advice from the medical community.Dan: Yes, I think many people will appreciate that bursting out in tears because you feel so hopeless.Shannon: Yes.Dan: it’s like, “Here we are. Here is your medicine.” You’re like, “How are you supposed to take it?”Shannon: Yes, it’s not helpful.Dan: It’s almost like nobody really quite gets the severity of what you’re going through.Shannon: No, I didn’t feel like he believed me.Dan: Did you then find another rheumatologist or another doctor to support you?Shannon: No.First of all, the first six months, I was in so much pain and so fatigued that I was basically bedbound. At that point, I had no energy to try to go around to different doctors. It took me a long time to try to go back to specialists and doctors and try different things.I tried a lot of different things, but that first six months, I couldn’t do anything.Dan: That was back in 2014, is that right?Shannon: Yes.Dan: Let’s step back a little bit for a moment. What happened before that?Shannon: Well, before that, I had a medical emergency. I had a main artery rupture in my sinuses that required emergency surgery to fix. When I was recovering from that, I suddenly had high blood pressure, so they blamed that for the artery rupture, and he wanted me to go off my antidepressant because sometimes that can be a side effect of the antidepressant.The problem was that they give you two weeks to get off of it. I was in such a fragile state from recovering from the blood loss. I took the two weeks to slowly taper off of it. It wasn’t slow enough.The day after I took my last dose, I woke up and felt like I had been hit with the flu. My whole body hurt. I had burning nerve pain throughout my body. I couldn’t even lift up my head off the pillow. That’s where I started. I never recovered after that.That was the catalyst. Even though I wasn’t feeling well the year before that, I was starting to get the fatigue and the leg pain and not recovering from exercise. But I think those two main things were the catalysts.Dan: It sounds like a pretty scary sort of thing to experience – having that bleeding – because obviously where is that blood going to go?Shannon: Down my throat and choke me.Dan: Yes, it’s pretty traumatic, isn’t it?I had a friend of mine and that happened to. He was out camping. He had actually had a surgery shortly before he went camping and a similar thing. It’s quite traumatic. Let’s put it that way. I don’t think people realize what a traumatic experience that is.Shannon: It’s scary.Dan: It sounds like you’re having a nosebleed, but it’s not really like that.Shannon: No, it actually happened to me three times. The last time, it was so bad. That was 2017 when I had the setback that we can talk about later. But I had two emergency surgeries that didn’t work. They had to go back in and crack open my sinuses which caused nerve damage in my face. I was in the ICU for three days. I had blood transfusions. That gave me PTSD. That was a really, really bad experience.Dan: Yes, because again it’s a feeling of helplessness, isn’t it?Shannon: Yes.Dan: I think that’s a really big component of PTSD for many people. It’s this whole thing that’s out of your control. “This is happening to me. This is not within the realm of anything that you can cope with.”Shannon: No, and it felt like I was trapped in my own body that was trying to kill me. I couldn’t trust my own physical body. It’s a terrifying feeling.Dan: Yes, and it’s really amazing how you’re talking about it now. Shows how far you’ve come.Let’s go a little bit back before that. There was already a year that you were feeling unwell. What was going on in your life around this time?Shannon: The first year?Dan: The year leading up to you getting sick.Shannon: Nothing. Absolutely nothing.I pushed myself a lot back then. I don’t do that anymore. But when I would exercise, I would push myself to the limit. I never rested. Self-care was not in my vocabulary. I just didn’t take care of myself. I was Type A. Everything perfectionist.A lot of personality issues that I didn’t have enough coping tools for stress. Some things that I learned when I had counselling for the PTSD. I actually did EMDR – the eye movement desensitization. I went for the recent trauma, but she actually helped me remember a trauma from when I was nine that I still had in my body that I was basically living in “fight or flight” since then.All that stuff I was carrying with me even before I got sick.Dan: Was that a very surprising experience for you?Shannon: Yes.Dan: Did it help you make sense of all those years of your life?Shannon: Yes, it was the best thing that I ever did. It was amazing. I recommend it to everybody.Dan: You mentioned that you were on antidepressants. Different people talk about depression in different ways, different models. There’s certainly the Neurotransmitter Theory which is what all the medications are based on.What do you think was at the root? Had you been having those challenges a long time leading up to becoming ill? Or was it a recent thing?Shannon: The depression I was treated for since I was in my early 20s. Depression and anxiety was always something I struggled with. Again, I think it had a lot to do with not having coping mechanisms for stress, not doing any kind of self-care, not knowing myself and how to deal with things in life. That’s something they don’t ever teach you in school.Dan: Do you think that early trauma was related to all of those things?Shannon: Yes, I think it was a piece of it. I think the A-type perfectionist personality is not healthy. I’m trying to let that go.Dan: Yes. Well, there are some pluses about having that personality, too. Let’s not bury it completely, but it certainly needs to be tempered.Shannon: Yes.Dan: It’s interesting how people often talk about a spiritual journey with the illness because there’s so much duress that something has to change. Often, we change how we engage in life because it’s like bitter medicine that you want to spit out.Shannon: Yes. Honestly, I did change. I feel healthier now – emotionally, mentally, and physically – than I did before I got sick. I’m grateful for that.Dan: Great to hear!2014 – you got fibromyalgia. The first six months, you’re spending a lot of time in bed by the sound of it. You’ve got kids and a husband, yes?Shannon: Yes. Luckily, my husband works from home, so he was able to take care of the kids and the house and the grocery shopping and cook for me.Dan: What’s going through his head? He must have been so shocked.Shannon: He kept me going. I kept saying, “I can’t survive this.” I was in so much pain, I would have to lay in the bathtub for hours and just keep filling up hot water because it was the only thing that took away the nerve pain. I told him, “I can’t do this anymore.”I didn’t want to die, but I didn’t want to live with that kind of pain anymore. I just couldn’t. It was so unbearable. He kept me going. He was like, “No, you’re going to get better. You have to hang on. You’re going to get better.” He never once didn’t believe that – or at least let me know he didn’t believe that.It was a good support.Dan: You’re lucky.People have probably noticed that I harp on about this. It’s probably because I’m fascinated about this whole thing when people keep a positive mindset because I completely lost mine.Maybe I wasn’t a positive enough person to start off with. I don’t know. Four or five years in, I lost all possibility in my mind that I would ever recover because I never heard of anyone recovering. No one ever said I could get better. I had tried everything that I could think of. I felt I was broken.Shannon: Yes.Dan: Was that similar to how you felt? What was that first year or two like?Shannon: I was in mourning for my life.I thought, “I will never be able to go to the beach with my kids again.” I couldn’t do anything with them. They would sit on my bed and just spend time with me, but I couldn’t even read them a book. It took too much energy to even read to them.It was grief – the whole mourning process. I didn’t have much hope that first year until I actually found your recovery interviews and saw that people do recover. That’s when I discovered, “Hey! You know what? This doesn’t have to be a life sentence!”Dan: That was in 2015?Shannon: Yes, a year and a half after.Dan: Hi. It’s Dan here. Sorry to interrupt. Just coming to you with a short message.For over a decade now, I’ve been working really hard to bust some of the myths around these illnesses. These include ME/CFS, fibromyalgia, POTS, multiple chemical sensitivities, and related syndromes.The myths are things like that the illness isn’t real, that it’s all in our head, and also the myth that recovery from this illness is not possible. A decade later, things are changing, but I still need some help to spread the word.I would really appreciate you taking a moment or two to show us some love to the podcast – give it a thumbs up and subscribe. You could really help by taking a moment to share this podcast with other people that have this illness. That could be an online forum, social media, Facebook groups, or even directly someone that you know. I would really appreciate your efforts to help create change.Let’s get back to the podcast now.A year and a half being ill, were you bedbound most of the time?Shannon: The first six months. I did have a couple of setbacks where I was back to being bedbound.But after the first six months, I started doing small things – like, I could do one thing and then go rest – cook a small meal and then go lie down. Of course, at that point, I still thought that I could push my way to recovery.You know, when you exercise, and you get stronger? I thought, “If I could just push myself a little bit, maybe vacuum one room, then maybe it’ll be easier the next week.” Of course, no, because then you crash for three days, and you get worse. I didn’t understand that at that point, though.Dan: So many people have this idea, “I’m weak. It’s a condition I have to build up,” but that’s not really what’s going on because we’re ill. You don’t see somebody who comes out of hospital with cancer in a wheelchair and go, “Well, go on! Get up!” It’s funny how we have these sorts of things.What happens next? You see those videos. You see this idea of some people recovering. Is that the first time you heard of the idea that people can recover?Shannon: Yes, for sure.Dan: Weren’t you a bit dubious? What were you thinking? Were you confused?Shannon: No, I thought, “That’s great for them, but that’s not me. I’m too far gone.”But then, I saw videos where people were worse than I was, and they still recovered. I tried to pick out what they were doing specifically that helped them. I started trying different things at that point.I tried acupuncture. I went to a functional medicine doctor. She helped me with a few things. I found out that I can’t process B12 from foods. I had to get the methylated B12 which took away my headaches. I had daily headaches and migraines. That helped a symptom.I did HeartMath where you put the little thing on your ear, and you have the app on the phone. That was basically like meditation. It was just another form of meditation. I was doing a lot of meditation and some restorative yoga. I changed my diet. I took away sugar, caffeine, and processed food.All the stuff I was trying, some of it would help some of my symptoms feel a little better, but it was not leading me to recovery.Dan: What were your symptoms? If I were to get you to rattle off your symptoms quickly, what were they?Shannon: Definitely the nerve pain in my legs and hands, really bad brain fog, dizziness, vertigo, blurred vision, severe fatigue, light and sound sensitivity, and some new food sensitivities. One of the worst ones was I had a hard time digesting solid food.When I was at my worst, it felt like, if I ate something, it would just be a rock in my stomach, and I could feel my nervous system react. My heart rate would shoot up and my chest would get really heavy. I would get tachycardia really bad, and this would last for an hour after I ate.I was afraid to eat at that point. This was one of the times that I felt like I wasn’t going to survive because how do you survive if you can’t eat? Later, I got the POTS symptoms and tachycardia every day. When I’d try to fall asleep, I could get tachycardia, so I couldn’t sleep.I started having daily panic attacks, but that was after the setback and the emergency surgery in 2017. At that point, my nervous system was totally dysregulated. I didn’t think I would ever fix it.Dan: This was after the emergency surgery in what year?Shannon: 2017. That was the third time that the artery ruptured. I had a specialist in St. Keith’s which is an hour from us. We made that drive – with me bleeding out – to go let him do the surgery because nobody else could help me. They kept doing surgeries that didn’t hold.He was the one that went in and cracked open my sinuses to reach the artery and cauterize it. But because it was such a major surgery, I had lost so much blood, and because it wasn’t fully healed, it dysregulated my nervous system. It was so far gone.Dan: Because you already had a dysregulated nervous system.Shannon: Yes.Dan: You already had fibromyalgia and CFS.Shannon: Yes.Dan: Then, to have a traumatic thing again, a surgery on top of it, and all the blood loss, can you think of a worse combination?Shannon: No.Dan: People avoid surgeries and things because they feel they can’t cope with it, and yet you’re thrust into this. How did you wake up the next morning after that?Shannon: Terrified. I was so terrified. I was in the hospital.In ICU, they had already given me a blood transfusion, but they kept saying, “We might have to give you another one.” My heart blood pressure was so low that they were afraid that they needed to give me another transfusion to get my blood pressure up, but they decided to wait, so I’m laying there.“Am I just going to die here in the ICU?” It was terrifying. I can’t even describe it.Dan: Absolutely. What a nightmare.How was your husband coping with all of this?Shannon: He is my rock. I don’t think I could have made it through without him because he stayed in the hospital with me all the time. I came home and I was in a wheelchair for two months because I wasn’t functioning, obviously. He would have to wheel me to the bathroom. He’d have to wheel me to the bath. He took care of the kids and the dogs. He cooked dinner. He kept everything together.Dan: What were all your family and friends saying? “What’s wrong with you? Why are you so sick?” Did they understand it? Did they believe you?Shannon: No, nobody understood.My mom did. She came over quite a lot and helped out, but I lost all of my friends, basically. Even my family – when they saw me a few months after the surgery, I think it was Thanksgiving – they were like, “Oh, my god, I didn’t realize you were that bad.”I thought I looked pretty good coming off of death’s door. I had makeup on. I brushed my hair. I thought I was looking good. They were like, “Oh, my god, I didn’t know you were so bad!”Dan: They should have seen you earlier, eh? They should have seen you the day after the surgery, then they would have had a different idea.Shannon: Yes. Now, I just have my husband. That’s who I have.Dan: What happens next?Shannon: After I tried all the stuff, I feel like I recovered up to 70 or 80 percent before that 2017 surgery – trying all those things myself, learning about pacing. It’s so funny. If doctors would tell you about pacing instead of trying to get you to do the – what do they call that gradient exercise? That’s all I had learned at first – the gradient exercise which does not work.If somebody would have said to me, “Don’t use more energy than you have!” that was a really big key for me. That’s when I started being able to do more – when I realized you have to rest. You can’t feel guilty about it. It’s just something you have to do.After the 2017 setback, I found your program. I found the ANS Rewire Program in January which I was really excited about because – like I said – I had watched so many of your interviews with recovered people and I knew you had recovered. I was like, “Yes, this is going to work for me! I’m excited. This is something I can do!”Unfortunately, because I have the PTSD and super bad anxiety, I needed to take care of that first because I ended up with the POTS symptoms in May. I ended up in the hospital. What happened was I tried to do a shopping trip because I was practicing the posture and being able to walk through the stores relaxed and I thought I was going to pass out.My heart rate suddenly shot up and I felt like I was going to black out. I made it home and called my neighbour to come sit with me. I was like, “I don’t know what’s going on. My heart rate is through the roof.” My blood pressure was up. I couldn’t stand up. I tried to stand up again and my doctor told me to go to the hospital.They kept me in there for five days and they did really invasive heart tests. They took me in and put a catheter up into my heart and shocked it to try to see where the tachycardia was coming from. Of course, they wake you up before they shock your heart so you’re up for all that tachycardia, and it was awful. I would never want to go through that again.They put me on a medicine called Corlanor which is basically for heart failure patients and diagnosed me with POTS so that I could leave the hospital. “Here’s some medicine to keep your heart rate down so you can leave the hospital.” I was freaking out at that point. I came home and I’m like, “Great! This is the one symptom that I didn’t have – and that I was terrified to have – and now I have it!”In your program, you say, “Don’t freak out your puppy.” Your nervous system is your puppy. I was totally freaking out my puppy. I was chasing my puppy around. That’s where I was.Dan: What percentage recovered were you before you had the setback?Shannon: I’d say about 70.Dan: Not too bad when you started ANS Rewire.Shannon: When I started? No, when I started, I was bad. At that point, I was probably 30 percent.Dan: Was that the catalyst. Did you know about the program previously? You’d seen the interviews for a couple of years. I guess I never really plugged them so much.Shannon: No, what’s really funny about that is I had gotten the CFS Unravelled book maybe two years after, but I still had brain fog, so I couldn’t really understand it. I got a couple of general ideas from it, but my brain was not well enough to put it all together. But, no, I never saw the ANS Rewire Program.I went to look at more videos and I was like, “Wait! What is this?”Dan: Yes, I don’t normally try and promote it. I want these videos to all stand on their own and people to get hope. I don’t want to look like it’s just me trying to sell a program or something like this, but obviously the program is an important resource for people to move forward which is why I’m now sharing more of the stories with people who did the program as well as other stories. Bad on me!Shannon: Get it out there!Dan: You started the program. You obviously had that bad setback. You were trying to get back into life. You were using some of the strategies. Then, I guess you pushed yourself too much. Do you think that’s what brought on the POTS attack?Shannon: No, I think it was that I hadn’t dealt with the trauma. I had tried counselling and I couldn’t even talk about it. I would hyperventilate in her office, and I’d have to leave. I had to deal with that.Dan: This program was supposed to make you better – help you get better. Now, it’s like it’s worse than ever. What were you thinking here? Did you straight away go, “This is the PTSD!” from the education in the program?Shannon: Yes.Dan: Did you go, “Oh, my god, I don’t know what to do now”?Shannon: No, I knew. Because your program is based on healing your nervous system, I knew that having that kind of anxiety and me triggering my nervous system constantly.For instance, I couldn’t walk into my bedroom for a long time because that’s where it started. Every time I’d try to walk into my bedroom, I would trigger my nervous system. I would pour beet juice down the sink, and it would trigger my nervous system because it would remind me of blood.I knew this program could help me. In fact, I have to say, when I came home from the hospital when I got diagnosed with POTS, I was so bad off that I had to lay in the dark because I couldn’t process sound or light. All my energy was used to keep breathing. My brain couldn’t process anything.All I did was lay there. Luckily, I had gone through the modules of the process where you stop your thoughts, and you control your thoughts, and visualizing myself being well. I think those things actually saved my life because I feel like, if I would have just given up, I would have just stopped breathing at that point.I was so on edge. I was in this weird coma. I couldn’t even talk. I couldn’t process anybody else talking to me. Laying there, having something to do – to think about these modules that I’d already done – I really think that saved my life.Dan: You know, we don’t talk enough about these dark times. I don’t really like to talk about them a lot in general because I think people then get this idea that maybe they’re heading for that.Shannon: That’s true, yes.Dan: I think that doesn’t tend to happen that often. It happens, and it sometimes happens for a short time, but it’s not like one can expect for that to happen. I have spoken to countless people and heard countless stories and emails, and it’s not that common.People see this on the internet, and then they think, “This is what happens. I’m going to get this!” and it’s not what happens. But I think it’s worthwhile talking about when it happens because I think people often think it’s like a one-way road when they get there, especially if they’ve heard some of the horror stories. They think, “Once I’m there, there’s no coming back from that.”It is a dark place. It is a scary-as-can-be kind of place where you’re just trying to hold on to cope, isn’t it?Shannon: Yes.Dan: You’re just trying to cope in every moment. When you were in that scary place, you were using some of the strategies that we actually use primarily for effecting neuroplasticity to help the nervous system normalize. Do you actually use them for the anxiety side of things that comes with this?What are you thinking? Are you thinking, “This will go away,” or “It won’t go away”? There must be a lot of fear. What’s going on in your head? How did you get through it?Shannon: I did have those really dark thoughts – like, “I’m not going to make it” – but then I had learned to pay attention to those thoughts and stop them. I didn’t let myself go there for very long. They would pop up. I would deal with them in a few seconds and replace them.Dan: Now, obviously, people learn about this in the program, but I want to explore this a little bit because it’s not just about what tools you have to do these things. It’s whether you want to do it.What I mean by that is, of course, nobody wants to be suffering, but if you’re thinking this is bad stuff that’s going to happen, why would you want to change those thoughts?If you’re staying on a railway track and there’s a train coming, you don’t want to be going, “Don’t think about the train.” It’s coming! If you think it’s a reality that this bad stuff is going to happen, how do you find it in yourself to make that shift?Shannon: One of the things that I learned in the program exploring myself is that I catastrophize. I go to worst-case scenarios in every situation which is great for fiction writing – not so great for living life. That was one of the things that I had been working on – not going to worst-case scenario with every thought.I was already primed for that. I was already working on that – like, “Don’t let yourself go there!”Dan: It sounds like you recognized that perhaps this train that you’re seeing coming is not real.Shannon: Yes, perhaps I can change the direction of it. I have that power.Dan: What happens next? Was that the lowest point?Shannon: That was the lowest, yes.It took about two weeks before I could be wheeled to the bathtub and sit in the bathtub. Eventually, I think it was in about a month, I could get back on the computer and get back to the program and that was it. It was about six months from the time I left the hospital to when I could get off the Corlanor and I no longer had the POTS symptoms. That was all through all the work I was doing.The program is simple, but it’s not easy because you have to do the work. You have to believe in yourself. That’s what I did. I think it took about 16 months maybe for me to get to the point where I felt about 80 percent healed which – after being sick for six years – was amazing to me. I would have probably been happy staying there. I was feeling as normal as I thought people should feel, but then I kept getting better.I think it was in May of this year when I finally let myself believe that I was recovered because I actually went and worked out in the yard for the first time in six years – in the Florida heat! It’s like 95 degrees in the summer. I worked outside for two hours. I was sweating. It had been six years since I could sweat. I was having so much fun.Then, I came in and I was waiting to crash. You still have a hard time trusting your body. I just got sore, and I was tired – like a normal person. I woke up the next day and I was fine – like, “Okay! I’m here!”Dan: I feel a bit choked up hearing about that. I think the words “let myself believe that I was recovered” – boy, that really resonates with my own experience too because we become so entrenched. I used to make the joke, “I don’t need a doctor to get rid of this. I need a priest!”Shannon: Yes, an exorcism.Dan: Yes, an exorcism or something. You know, we get this real self-identity that we are broken. How can you fix something that’s broken? All the king’s men and all the king’s horses or whatever couldn’t put Humpty Dumpty together again. It feels like that.You know what? The only way I think to overcome that is experience. It’s proof. All of this talk, other people’s stories, they’re nice. They’re boosting. But, at the end of the day, we need cold hard proof that (1) we can make progress and that we are not different, and that (2) we can actually fully recover.I don’t think you ever believe it until you get there.Shannon: No, you don’t.Like I said, I was happy at 80 percent. I was like, “Wow! I didn’t think I’ve ever get here!”Dan: You did these wonderful videos which we’ll share as well, but you did always talk it up. You always said, “Yes, I know I can recover. I believe I will recover.” When you said those at the time, was it like, “I believe it and then I don’t believe it” or did you think you were trying to convince yourself?Shannon: On some days, it was hard. On some days, I had to convince myself that I was going to recover, but I never said that out loud. I would never let myself say that to anybody. I would always say, “Yes, I’m going to recover. I know I’m going to recover.” That was my truth that I was hanging onto.Dan: Because it’s interesting. I wonder what other people will think, but when I look at those videos, I see it and say, “Yes, Shannon believes she’s going to recover,” and then I see the same video and she says the same thing and I go, “Shannon is trying to convince herself that she’s going to recover.”It’s really interesting because you can say one thing, but the eyes tell the story, don’t they? It’s really awesome that you recorded those things and shared them because I think everyone’s going to go, “That’s me!”Shannon: I hope so, and then I hope they can see themselves as me now!Dan: Yes, absolutely!You already had engaged in a lot of the stages because you heard people who have recovered (41:33 unclear) people outside of the program. Obviously, the program does a lot of education about how pain works, sensitization, the ANS dysfunction explanation which is the basis of my book and all of these kinds of things.I know it’s difficult to summarize it for people who haven’t done the program, but maybe we can talk about this from the pain point of view. When you had the POTS, your pain was still a daily occurrence for you? Or had you already gotten better?Shannon: It had gotten better. I still had leg pain and hip pain, but it wasn’t unbearable anymore. It was just there. But, yes, I learned how to go into the pain and, even through the meditations, learning to go into the pain and watch it dissipate.It’s that connection that we were talking about – the mind and the nervous system. The mind affects the nervous system; the body affects the nervous system. When you’re thinking about the pain one way, it’s actually physically affecting your nervous system. Is that too much information for people? I don’t know.Dan: No, I don’t think so.Shannon: It definitely helped with the pain. It’s a weird thing.Dan: It is a weird thing because the pain is real, first of all, but we’re central sensitization.Obviously, I share a lot of the research from around the world in the program, and we talk about the well understood mechanisms that are involved in pain perception. They’re not a mystery. I suppose the ANS explanation for the illness is a little bit less commonly understood.But with the pain perception, was that important to you – hearing how researchers for long periods now used this in hospital settings and all this kind of thing? Did that really give you confidence? Do you think that was an important part?Shannon: Sure. Yes, definitely, because I research everything.It’s important for me to have things like facts that back up and people that have done experiments and actually learned about this stuff. Yes, it definitely makes it seem more real.Dan: How did you get rid of the pain? Let me ask this. I’m trying to be in the position of the people listening who are not in the program. They just want to know, “What are you doing? What’s the magic?”Shannon: I think the magic is just – like you say – pulling up all the anchors at once. You have to get out of your own way. If you don’t heal your nervous system, your body can actually heal your nervous system. It’s a self-healing process, but you have to get out of the way.If you keep triggering your nervous system with things, it just can’t heal. I think that’s what I learned the most. I loved knowing how to get out of my own way – out of my body’s way – so it could do its thing.Dan: What we’re talking about here is triggering the nervous system. Most people who have CFS and fibromyalgia will know this. They go for a run, or they go to a party, or they don’t sleep.Shannon: Too loud noise.Dan: Some people have multiple chemical sensitives. But these are all kinds of triggers. Even if they have a fight with a friend – an emotional trigger or something like this. These triggers are physical triggers. I suppose there are neurological triggers if you like. Also, there are mental triggers – if they work too hard, strain too hard, reading too much, working too hard. Also, emotional triggers.A lot of people engage in mind-body approaches which can be very successful. Some people use a combination of strategies. I guess one of the key aspects of the ANS Rewire Program is that we do all of the different things at once.You did all the physical strategies. You were training the nervous system with physical strategies. You were training your system with mental strategies. You mentioned changing your diet and those things that helped a little bit. Did you find it hard to persist with this all and to do so many different things and, on top of that, do your own thing? It sounds like too hard work for somebody who’s exhausted.Shannon: I’m a perfectionist! Of course, I didn’t find it hard!Honestly, I made it my full-time job. It was the only thing I did in life. Like you said, every decision that you make, let it be your best one. Every thought was geared toward healing. Everything I did was geared toward healing.I guess I’ve been very privileged. Like I said, I have a husband that supports me and takes over when I can’t do things. It wasn’t hard because I was at a place where I knew that I didn’t have a choice. if I wanted my life back, this was my chance, and I was taking it.Dan: What spurred you on? What kept you going?Shannon: I wanted to walk my dogs!I had such a good life. I have such a good life. I have amazing kids and amazing family. I love my career. Just to be able to write again, my life feels like a fairy-tale now because it was taken away and now I have it back. I just wanted my wonderful life back.Dan: As a writer, I guess one of the things that you cherish most has to be your ability to think, right?Shannon: Yes.Dan: What was that whole aspect of it like – getting the fibro fog?Shannon: That was torture because I read a lot, too.I learned that your brain uses so much more energy than your body. I would say, “You know, I’m just laying here, reading. Why is it exhausting me after 15 minutes?” not knowing that that takes a lot of energy to do that. That was devastating – not being able to read, let alone write and work.Dan: I know you talked a little about grief and things like that – about the loss of your life in a way – your lifestyle and all of these sorts of things. As I start to come back, did you jump straight into it? Did you start writing? When did you start writing again?Shannon: I tried to start writing again when I was about 80 percent healed. I tried to go back to writing full-time and doing everything else too. It was too much. I ended up having to stop writing for a while.I took a few months off because I wanted to concentrate on my physical life because what happened is I was able to go to physical therapy which I couldn’t do before because it was too painful. She actually showed me how to do really lightweight exercises.And then, from your modules where you teach us how not to trigger your nervous system when you’re using weights, I was able to work out with weights for the first time and build some muscle back. I wanted to use my energy for that instead of writing at that time.I took a few months off after I felt relatively well.Dan: Did you find that, when you were exerting yourself mentally, sometimes you would struggle again?Shannon: Not anymore. Back then, when I was still 80 percent and before that, I would actually feel like, if I use my brain too much, it started feeling like electricity going through my brain. I started almost seeing lights. I could tell that I was overstimulated, so I had to stop and lay in a dark room or something.But since May, I haven’t felt that.Dan: Fantastic.What do you think is the most important thing about recovery? What would you like to share with people who are maybe in that dark place?Shannon: Just don’t give up because I did this, too. At that point, everybody is looking for a cure, and there’s not a cure, but I believe that there is a path to healing for everyone.That’s what I was so excited about in this program. You give us the framework for a perfect path for healing. All we have to do is take it. All we have to do is apply ourselves to it. That’s why I’m so excited about it.Just don’t give up. Find your path.Dan: I love that you say that. That’s really been my message from the very beginning. “It’s your path.” You didn’t do the Dan Neuffer ANS Rewire Program. You did the Shannon Esposito ANS Rewire Program.I mentioned you in the program, “You have PTSD or something like this. You need to address this. Look at things like EMDR. Look at ART. Look at an experienced hypnotherapist or NLP practitioner who works specifically with trauma.” It’s about finding reasons to get that sorted out. Other people are not doing that. They don’t have PTSD.It’s the same with the physical stuff. We’ve got all of these different physical dysfunctions. Some people have infections. They may need to do all kinds of things to get rid of infections and then work with a functional medicine doctor to do that, but other people don’t have that.I think this is where it gets a little bit muddled for people. Everyone keeps trying to peddle this cure. “Do this. That’s going to get rid of it because that’s going to—” It’s not one thing! Well, it’s one thing in a central driver which is the ANS, but all of those other treatments around it, you’ve got to find your own path, don’t you?Shannon: Yes, because we all got here differently.Dan: Absolutely.Shannon: We all have to heal differently.Dan: Now that you’re recovered, you got your life back. My question is what are you up to now, Shannon? Are you still writing?Shannon: Yes, I am working on a psychological suspense.Dan: Very good!Shannon: I’m back to writing full-time and just living my life. I’m able to walk my dogs – twice a day for 30 minutes each – and go to the beach and do errands without pacing. Everything! I can do everything!Dan: You’ve already got a book published?Shannon: I do. I actually have a series called The Pet Psychic Series that are cozy mysterious. They’re light beach reads. There are five of those. And then, I have a book called The Burning that I published under S.O. Esposito. That’s more of a darker psychological suspense.Dan: Was that the last one published?Shannon: That was the last one, yes.Dan: Was that before you became ill?Shannon: Yes. Actually, it was with the editor when I was in the hospital. They published it after I was sick, yes.Dan: It’s interesting that that was a darker one and the others weren’t and that was around your ill time. Is that coincidence?Shannon: Maybe I should go back to cozy mysteries. I don’t know!Dan: What’s your next one? What’s your next book?Shannon: It’s about a woman who is looking for a missing girl on an island. She’s on an island. They rescue wildlife and the girl disappeared from that island. She’s trying to find her.Dan: Very interesting! Well, I think you found one girl which is yourself. We always mirror an experience somehow, don’t we?Shannon: I use everything, yes.Dan: Absolutely. Well, you’ve got a lot more material now.Look, thanks again for sharing your wonderful story!Are there any final things we should talk about before we finish up?Shannon: No, just thank you very much for helping me heal!Dan: You’re very welcome! Thank you so much for sharing your story today!Shannon: You’re welcome!Dan: Thanks for tuning into this episode of the podcast! We hope you felt supported by it.If you have any questions, feel free to reach out to us via cfsunravelled.com and make sure that you subscribe to the podcast on iTunes or wherever you listen to it. You can leave a comment and a four- or five-star review if you feel so inclined.If you want to make sure you get your free copy of Discover Hope and get notified about all new recovery resources and interviews, including recovery interviews, subscribe to us via the website.Check out some of our other podcasts. I hope you’ll join us again soon.Please leave a comment at the bottom of the page!

7 Years of MECFS Fibromyalgia POTS End In Bumpy 2½ Year Journey