A mum's journey starts with excitement, but part of her didn't think it would work:
Mollie shares how she recovered after 4½ of ME/CFS/(POTS) using ANS REWIRE
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Mollie’s illness started with dyspnea and then tachycardia with chest pains and dizzinesss upon rising, but despite her symptoms she struggled to get diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) because on the occassion she visited the specialist, the symptoms abated.
Frustrated with a lack of answers, she tells about the various treatments she tried for things like Lyme disease and her eventual diagnosis of ME/CFS and the ever growing list of symptoms that just wouldn’t go away.
Despite many years of trying treatments, she wasn’t getting better and started to struggle mentally with the burden of the illness. After 4 years of illness, she came across the ANS REWIRE recovery program and once she enrolled, was surprised at the rapid progress she made.
She shares her mixed feeling about enrolling, her thoughts about different treatments she had tried previously including Graded Exercise Therapy and why the smallest adjustments in the strategies that made all the difference.
As a mum with ME/CFS, the stakes are high and the emotions around the illness become complex and Mollie shares how she juggled this. This interview took place 1 year after her recovery and is published 12 months after that. Mollie continues to enjoy excellent health and shares her advice and experience in this wonderful interview.
Dan: As always, this is the favorite part of my week and that is when I get to connect with someone to record a recovery interview.
Today, I am speaking with Mollie from Massachusetts in the United States. I’ve known Mollie long enough now to be able to say Massachusetts, so that is fantastic.
Mollie: It’s that hard to say?
Dan: When you’re not used to it, as an Aussie, I did struggle with that for a little while.
Mollie: I never thought of that. I grew up in New England.
Mollie’s onset with ME/CFS & Postural Orthostatic Tachycardia Syndrome (POTS)
Dan: Welcome to your recovery interview!
Mollie actually recovered using my ANS REWIRE program. Just a little disclaimer in the beginning.
We’re going to start, first of all, talking to Mollie about when she first became ill.
How long ago was that, Mollie?
Mollie: It was five years ago in March. Almost five and a half years ago.
Preparing for this interview, I was going back over some notes I had for my medical visits. I was surprised to remember how gradually it started. I hadn’t remembered that.
Dan: Right, That’s interesting.
What happened initially? How did it start gradually? Tell me about it.
Mollie’s first ME/CFS/POTS symptom; Dyspnea
Mollie: I’m a psychotherapist and had a specific type of therapy we were doing that’s based on mindfulness. In our meetings every week, we would have a supervision meeting to learn this type of therapy. We would do meditation which is a lot of focusing on your breathing.
My breaths felt uncomfortable and tight and constricted. It felt funny. It didn’t feel right.
Very gradually, it got worse over a month before I really got sick. I was sitting on the couch and I started having chest pains. I had called the doctor. My breathlessness was getting worse. They call it dyspnea – feeling like you can’t breathe. I had been to the doctor about it.
It was on my third doctor’s visit that I was hospitalized, actually. The first day I stayed home from work because I was so breathless. Talking was a part of my profession, so it didn’t feel like I could do it. When I talked, I’d get so dizzy and out of breath. I thought, since I was home, I would do some chores around the house. I couldn’t do that and I found that just trying to put the laundry away would make me so dizzy, I couldn’t stand up. That’s when I knew something was really wrong. That was within a few weeks of my first symptoms.
Dan: It must have been obviously very scary. These are very serious symptoms.
What were the doctors saying on what they thought was wrong?
Mollie: Because it was cardiac related, I went into the cardiac unit at the hospital. After I was released from the hospital and they weren’t sure what was wrong with me, people thought it was myocarditis for quite a while which was quite scary because, with myocarditis, people die in their sleep a lot which was terrifying. When I went to sleep, I thought I might die.
Dan: That’s very upsetting and stressful, obviously. It’s scary.
Mollie: From when I first got sick – you know, the first symptoms – to when that was ruled out, I think it might have even been a couple of months before that was ruled out.
Dan: And then, what did they say?
Mollie’s ME/CFS/POTS interpreted as ‘crazy’ or ‘depressed’ & not really sick
Mollie: At the hospital, because they couldn’t find what was wrong with me, they mainly thought I was crazy.
Dan: You did get the “it’s all in your head” after a while. With all these real measurable symptoms, I thought you would have avoided that.
Mollie: I know. They think they’re being sly, but I’m a therapist. They were like, “How have you been feeling lately? Have you been depressed?” I’m like, “I understand where you’re going with this, but this isn’t something crazy. It’s happening to my body.”
I was admitted to the hospital a few weeks after my first symptoms. I crashed really fast. I wasn’t able to walk to my doctor’s office by myself to go to see him. After a day or two in the hospital, I couldn’t walk to the bathroom without falling over. I was really dizzy and really sick.
The morning they released me, I was actually able to stand, but not well. It was like I was doing the tightrope walk, but I could do it. I could walk again without a walker.
I went home and went to a natural clinic. They weren’t sure what was wrong with me. Because I’m from New England, a lot of people suspected it was Lyme disease, so we barked up that tree for a while.
There was a question of maybe mold toxicity or something like that. I went to an infectious disease specialist in Boston. They did a bunch of tests. They did two rounds of antibiotics for Lyme in case it was Lyme.
I have to say, with chronic fatigue, because I needed a diagnosis after a few months, I asked if they would give me a diagnosis. We went through the symptoms. They thought it was an accurate diagnosis. They did an IV of Vitamin B – intense IV vitamins for a while. They helped at first, and then I actually started to feel ill after them. I would feel worse for my system. And so, I stopped doing those.
At that point, I couldn’t drive. I couldn’t drive my son to school. I couldn’t drive at all. At that point, I wasn’t even bathing. Bathing was very difficult. I wasn’t doing anything. For a few months, I was just lying on the couch and doing nothing. My son was five years old.
Dan: Five years old, was he?
Dan: This was about three months into the illness?
Mollie: Yes, for the first few months.
After the first month, I got really sick. For several more months after that, I was completely incapacitated. I couldn’t do anything.
I got a little improvement from there. I got my dizziness under control enough so that I could drive which seemed to just happen naturally.
I started managing my energy. I would basically rest all day so I could pick up my son from school.
Dan: Fair enough.
Three months in, you found a way to manage your lifestyle – basically resting and using whatever energy you have to do some of the basic things of looking after your son like picking him up from school.
What happens from here on in? Do you have fatigue? Do you have dizziness? Do you still have the cardiac symptoms, the pain? Do you have the tachycardia?
Mollie’s ME/CFS/POTS symptom of tachycardia starts and more symptoms show up
Mollie: I had tachycardia. It would strike unexpectedly. It was worse that it struck at night because then I couldn’t sleep. Who can sleep when their heart rate is 130?
I had tachycardia and I had chest pains and I had the dyspnea. The dyspnea got better, but it would just randomly strike. All of a sudden, I would have chest pain and dyspnea.
I took a muscle relaxant for chest pain. It was so incapacitating that I thought, “What’s the point of that?” The only reason I wanted to get rid of the chest pain was because it was hard to cook dinner or stand up or do anything when I had chest pain. The muscle relaxant made it way worse. I was a vegetable, so I just lived with that.
Dan: The breathing difficulties were very persistent?
Do you want me to say all my other symptoms?
Dan: Yes. By all means, share your symptoms.
Mollie: Let’s see.
In the beginning, I felt like I had the flu all the time, and then it started coming and going. Usually, at least once a day, I would feel like I had the flu. Sometimes, I feel like I had the flu for a week or several weeks without really a break.
I was exhausted. Sometimes, I would wake up exhausted, and I would stay exhausted all day. Sometimes, I would perk up in the morning. I was always a mess in the afternoon. The whole afternoon, I couldn’t ever plan to do anything. Sometimes, I’d perk up again in the evening. Sometimes, it would just be the whole day.
I remember beings so tired that it would physically hurt. Do you ever get that? It physically hurt – how tired I was.
I always describe it to people like it’s the afternoon crash you have after lunch, but it’s a hundred times that feeling. I would get confused and disoriented. I couldn’t think. I have really bad brain fog.
I’m just looking at my notes.
Then the dizziness and the wooziness and the brain fog was really bad that I couldn’t do anything that required mental effort except in the morning. If I was having a good morning, I could pay bills or do stuff.
I had my laptop so I would lie on the couch all day. I was always on the couch. I called myself Horizontal Girl. I got a lot done from the couch.
Dan: Your little office.
Mollie’s difficulty getting a Postural Orthostatic Tachycardia Syndrome (POTS) diagnosis
Mollie: Yes, I think I had POTS. The doctor said I didn’t have POTS because he did one test. I didn’t have a POTS reaction that time, but I thought I had POTS because, when I would stand up, I would sometimes fall or tip over. I was so dizzy.
Dan: That’s a really interesting thing.
Again, in medicine, I guess we would like to have evidence which makes sense, but I think the thing we see first – POTS and whatever name you want to give it – is that nothing is the same over time. It’s very variable. It’s the same with blood sugar tests and all these kinds of things.
Here you are. You’ve got all the POTS symptoms. You’ve got tachycardia. You’ve got the problems of getting dizzy when you rise. You’ve got the blood pressure issues. You’ve got the whole thing, and you have it persistently. You have it virtually all the time, right?
At the point I was seeing that neurologist, I think I wasn’t even driving. I was so dizzy.
Dan: The only time you don’t have it is when you’ve got enough nervous energy and you’re on the tilt table and you come up.
Dan: And so, you don’t get the diagnosis. It just doesn’t seem to make a whole lot of sense to me.
If you’re reporting this every day, and it just doesn’t happen that one time on the tilt table, it doesn’t mean it’s not there, does it?
Mollie: That’s right.
This other neurologist I saw made me so anxious. They do very painful nerve tests. He made me so anxious that my blood pressure was actually high. My blood pressure was consistently 90 over 70, 80 over 60 or lower down to 50, but this person made me so anxious that I actually had 130 blood pressure because he was so stressful. I could see he didn’t believe I was really sick. I had to spend an hour with him.
Sitting in the chair at doctor’s appointments, as you probably know, was so difficult because sitting up in a chair was very challenging for me. It was physically exhausting. It was just a nightmare.
More ME/CFS/POTS symptoms
Mollie: I was starting to get migraines. I got my first migraine in the hospital and also headaches as well as migraines. At night I was hot and cold and hot flashes. My doctor said it’s not a hot flash if it lasts an hour. That’s not a flash.
I had really bad hot and cold sensitivity. I would always be overheated or freezing. I was never really comfortable. I used to change my shirt sometimes three or four times a day because I would just sweat and sweat.
I had low-grade fevers – 99 to 100 degrees.
I had sore throats, pins and needles in my arms and legs, and eye irritation. My eyes felt grainy. They hurt. I had sensitivity to light and sound. I was constantly turning off lights. People would have to be quiet. My husband couldn’t listen to any music in the car. I would get completely overwhelmed.
I had a lot of abdominal symptoms. I had a lot of abdominal pain and nausea, especially in the beginning. That got better, actually. That was a symptom that I think almost completely went away. But, in the beginning, that was a big symptom. They also thought I might have a simmering appendix or something because I had so much abdominal pain.
I think that’s all of them. Let’s see.
Mollie’s experience getting help for ME/CFS & POTS from medical doctors
Dan: Did you have a nice doctor – a GP that you could go to with this?
Mollie: He was lovely. He was the one who gave me a diagnosis so I could go on social security. He was really sweet, but he basically said, “I can’t help you. I don’t have any idea how to help you.”
Dan: He knew enough to diagnose it, but just couldn’t treat it.
Mollie: Yes, because he was a smart guy. He looked at the symptoms in the book. He could see that I had well more than enough of them.
And then, I found an integrative doctor. He had a lot of experience with it. He tried everything that he could try with me. He moved my baseline up from maybe five percent of functioning to 10 or 15 percent of functioning, depending on the day. Maybe over five percent of functioning to 10 percent of functioning. It’s hard to quantify, but he definitely bumped me up. He did a lot with my adrenal system.
I took a lot of herbs to boost my adrenal system. That definitely helped. I felt a little difference.
I ended up also going on armour thyroid. That was the only medication that helped. I tried lots of different medications that often help people with chronic fatigue. All of them either did nothing or made me really sick or got me hives. It just made me worse. All of the things that were supposed to bring my cortisol level up, all the steroids stuff made me both completely crazy and gave me brain fog and just made me really ill.
The thyroid medication mixed with all the ginseng and the liquorice and all those things brought my baseline up enough that I had less intense crashes. I could consistently expect that I could drive my son to school.
What life is like with ME/CFS and POTS for Mollie
Dan: And lie on the couch?
Mollie: And lie on the couch and make dinner.
Dan: You could make some food. That’s great.
Mollie: And maybe do laundry. On a good day, I do laundry or some small household tasks. I could maybe do some work in the garden. I couldn’t dig. My husband did all the heavy work, but I could do a little work every day.
I had maybe an hour or two hours of potential output for a day. I felt that was pretty good, actually.
Dan: That’s funny how the goal posts change after laying on the couch long enough. Something that would have probably made you feel absolutely dismayed in the beginning would suddenly seem pretty good.
Mollie: I would feel like, “Hey! I just had a wash today!”
Dan: “Oh, I left the house!”
I didn’t do the grocery shopping. Occasionally, I would. I started using the rider carts. They have those electric carts where you sit, and you ride around. I would occasionally do some shopping with that, but I didn’t do the big shopping generally, but I could go to the corner store and get a few things. That was really nice.
Dan: Had you been working when this started?
Mollie: I was working.
There was just one day where my breath got so bad, I didn’t go into work. I never went back to work after that. I left work on a Thursday and thought I was coming back on Monday. I worked Mondays through Thursdays. I never went back because of it.
Dan: So, when we’re talking about how you’re feeling a little bit better to manage some kind of activities of living, even though you’re obviously not able to actually engage in life, what sort of percentage functioning are you at this stage – the stage we’re talking about?
Mollie: I don’t know. On a good day, maybe 15. It was 15 of certain things. But, as far as being able to go walk or something, I couldn’t do that. Doing anything physical, moving around, even just doing some things in the yard and I started walking back and forth across the yard to do some things, even light yard work, I couldn’t manage that – walking around.
Dan: How long into your illness was this?
Mollie: I guess after the first year.
Why Mollie found psychotherapy helpful with ME/CFS/POTS
Mollie: I also had a good therapist. A lot of my feelings about being sick, I was really confused. Part of me didn’t really believe I was sick. As soon as I felt good, if I felt good for five minutes, I would start moving around and doing things like I was well, and then I’d get really, really sick.
Whenever I had a good day, I would overdo it, and then I would be worse. Therapy helped me really accept that I was sick. Also, if I got mad, I would be really physical, and then I would make myself really sick. I was so angry about being sick.
Therapy really helped me. I was depressed. That didn’t help my physical state. After about six months, I got depressed – clinically depressed. It helped with all of that, but I only did therapy for about a year. I didn’t have that much energy, and that would be a big day for me to go to therapy. It would blow the whole day.
I did just under a year of therapy. It really helped, though.
Dan: Yes, it really makes sense.
Obviously, what a shocking thing to suddenly lose your whole life – not be able to work, not be able to do virtually anything. How depressing. Many people don’t believe you and there doesn’t seem to be any prospect of getting better.
I think many people, not just in the community, but actually people with CFS don’t recognize what a terrible experience it is. Even though they’re experiencing it, they don’t recognize it in the sense that they acknowledge what a rough thing they’re going through, and to go and seek help and to get some therapy and to talk to people about it.
I mean, they know how bad it is. They’re often telling everyone how bad it is that they’re feeling, but we’re not doing enough about it. I think that’s a mistake many of us make. I guess we’re lucky enough to have a husband who knows about these things to nudge you along.
Mollie: Me, too! I’m a therapist too, so I know.
Dan: Did you go on your own back? Or did you need that nudge?
Mollie recognises depression during her ME/CFS/POTS difficulties
Mollie: No, I did it on my own back because I know the science of depression. I was like, “I am having depression and I need to do something about it,” because clinical depression is not a joke. It’s really serious.
You know, the big sign of clinical depression is when you cannot experience any joy or pleasure. You’re sitting there in a joyful scene with my husband and my son, they’re raking leaves and we’re sitting around, having a lovely time, and I just feel like I’m going to cry and all I can do is try not to cry. Then you know you’re in trouble because, when you can’t experience happiness, and the things that were happy would make you feel worse because you feel like you’re supposed to be happy and you’re just trying to hold it together. That’s when you know you do need to get help. It’s definitely at that stage because that cannot be good for your health.
You know, depression is terrible for your physical health.
Dan: In some ways, actually, when I talk to people about their recovery, I think this is perhaps the most important thing. People get confused when I say that because they go, “Well, you’ve got all these strategies, and we’re trying to get well. Why would this be the most important thing?”
Well, if you haven’t got this together, you can’t do anything. If you haven’t got this together, nothing else almost matters. It doesn’t really matter. If you feel like you can’t enjoy your life, then why do you need your life to be better?
After I went to therapy and after I reconciled myself and I sort of made my life, it had a lot of grief about what I had lost, but I was able to have a happy life. I had a lot of great things to make me so sad, but I had a happy life and I was really thankful. I would say, “I have a really good life. If this is what I’ve got.”
Also, I was 38 when I got sick. I had all those adventures. You know, I’d had a life already, so it wasn’t like I was missing out. You know, I was missing out, but it wasn’t like I never had a life like some people who get it when they’re young. I don’t know how they cope feeling like they’re never going to experience anything.
Dan: I guess that was your outlook at this stage.
Mollie: Yes, I felt like I’ve had a great life and my life now is still great.
What really killed me was when my stepfather was getting sick with Alzheimer’s or different things in the family. I couldn’t help when my sister-in-law had the baby. I couldn’t help anybody. I couldn’t contribute.
Just contributing to my family as much as I was able was my max. I didn’t feel like I could really be a part of things and really step up, and that’s really important to me. That was really difficult.
Otherwise, I felt good about my life.
Dan: Well, that’s fantastic.
Your outlook was basically you didn’t think you would get better?
Mollie tries lots of treatments and drugs to try to cure her ME/CFS/POTS
Mollie: No, we ran through all the herbal and medical interventions. My doctor seemed really knowledgeable. I think he is.
I have a list here. One, two, three, four, five, six, We tried seven different medical drugs. Those were all the ones that made sense for chronic fatigue. None of them helped me a bit except the thyroid, and that was just a teensy bit. I had kind of given up.
Mollie tries Graded Exercise Therapy (GET) with disastrous consequences
Mollie: I tried acupuncture. It made me sicker. I did a staged exercise. That was the biggest mistake ever. That made me incredibly ill.
Dan: Graded exercise therapy?
Mollie: Yes, I tried doing graded exercise. That didn’t help.
I tried doing physical therapy. The physical therapist would give me exercises. I couldn’t do them. I tried for two weeks. I was supposed to do these things with my arms. I was like, “I can’t do this.” MY husband wanted me to try tai chi gong. I can’t, I couldn’t do it. It was too exhausting.
Mollie’s difficulties as a mum with ME/CFS/POTS
Dan: It must be pretty difficult as a mum, too.
Mollie: It was really difficult.
Every summer, I would wave goodbye when my son and my husband went off on their summer vacation. It was really sad. On the weekends, my husband would take my son out. They’d go to the fair and go to the museum and do all those things. I would always stay home.
Sometimes, I’d go to a movie with them, but actually going to the movies, because of my sensory stuff, it was so exhausting, so I wouldn’t do it as much.
I think I remember you talking about this, too. If I did do something, like I went to the fair one year in my wheelchair, if I’d do something, it would be fun, but it was also so difficult. I was doing it for other people. It was really hard to not be part of his life like that.
I think, in a way, there was a way that I was more available to him. Emotionally, we know each other really well. We stayed really close. Our connection was really good because I was always there. Whenever he wanted to talk to me, he was there on the couch. I was never too busy. Now, I’m busy. Now, I’m like, “I’m busy, Isaac. I can’t talk to you right now. Tell me later.” But I was always there.
All I had was time to sit and chat.
Dan: And you were good at listening because talking was hard.
Mollie: Sometimes, I would just lose it. With the sensory overload and feeling the fatigue and the flu symptoms, sometimes I would be like I need half an hour with nothing coming in. Like, I just need it to be quiet. I would need to be in a cocoon. Sometimes, he couldn’t let me have that. I was alone in this a lot and I would just lose it. I would just have a meltdown. “I have to be alone right now.” I couldn’t cope, literally. That was really hard, and I felt really guilty because I’d be like, “I can’t cope. You have to go right now.”
Dan: I totally relate to that myself as well.
I remember it was unbearable to have somebody in the room.
Dan: Just to be in the room, and the potential of them talking was too much.
Mollie: Yes, because they might interact with you.
Dan: I couldn’t handle it, yes. Hard for a healthy person to imagine.
Mollie: It’s so hard when it’s your children because you feel like you’re pushing them away and they don’t really understand.
Dan: Yes, absolutely.
Mollie: That’s when I really felt like a bad parent.
Mollie: I couldn’t interact with him.
Dan: Couldn’t respond.
Dan: Obviously, we’re a few years in. How many years was it that you were sick for until you actually enrolled in ANS REWIRE?
Mollie: I first got sick in December 2012. By the end of January, I was incapacitated.
It was four years later in March – four years and three months.
Dan: In those four years, did anything change? Did it sort of stay stable?
Mollie: Between the liquorice and the ginseng and all those things for my adrenals, and then once I started the thyroid, I didn’t have so many. Before that, I started on that which I think was actually three years in. I would have full weeks where I just couldn’t even get up off the couch. I couldn’t cook. That kind of stabilized. That kind of depended on my hour or two of activity a day.
Dan: Because I guess you learnt to manage yourself and your activity better, yes?
Mollie: Yes, but then nothing changed. I was very, very stable.
I guess the migraines may have been getting worse. The migraines were really problematic because then you’re really not functional, but now I was in this kind of stasis. I figured that was how it was going to be.
Dan: What was your son saying to you? I guess that became his normal.
Mollie: We had always told him that I was going to get better. I don’t remember how that came back.
I think, in the beginning, I told him I was going to get better. He really stuck to that. We always talked about what we were going to when I got better. He’d be like, “Mum, how long till you think you’re going to get better?” I would say, “You know, well, a lot of people get better after five years.” There were all these markers for chronic fatigue – like, a certain number of people get better after five years.
I was kind of waiting it out. I thought maybe I would have a spontaneous remission. I would say, “Well, you know, maybe another year.” He really believed it. We would talk about what we were going to do when I got better, but I didn’t believe I was going to get better. I was just humouring him, really.
Dan: That must have been heartbreaking to have that conversation with your son.
Mollie: It was, but he was really understanding. He’s a really sweet kid. He’s really understanding.
He would get so excited if I could come to something. Like, “You’re coming, mum? You’re coming?” He just accepted things. My husband is a wonderful father, so he gave Isaac a lot of attention and energy. It exhausted him because he works a really long week. He had two jobs. He’d come home. On the weekend, he would have to be on for my son. He would take him on trips. It was hard.
Mollie’s trigger for ME/CFS & POTS – leading up to illness onset
Dan: Well, we'll just talk about your turning point in a moment. But before I do, I want to ask, you know, when you reflect now on the time leading up to illness, because you said that it kind of came on gradually with the breathing and there wasn't, you know, you're happy there were no sort of issue. Did anything happen in the 18 months leading up to the illness of note?
Mollie: I think when I look back... I mean, one thing is that they found that I have the coxsackievirus, which is a virus that is implicated in chronic fatigue. In fact, there was a big plus in coxsackie. I think it was in coxsackie New York, but maybe I'm wrong. But anyway, there was a big coxsackie chronic fatigue cluster especially as a bunch of them were children. Somewhere in New England or New York. I can't remember where. So that was one thing.
Dan: So, you actually had that virus?
Mollie: I did. I never knew I had the virus but when they were trying to figure out what's wrong with me, somebody tested before and said, "Oh, you have coxsackievirus like, that's probably what." And then, we thought that it was why I was sick. I thought I'd get better than I didn't because that also causes myocarditis. So that was part of that whole maybe myocarditis from the coxsackie.
And then the other thing, I guess, I had a very sustainable lifestyle. My son was in preschool. I worked part time. I had a lot of time at home with my son. I had a lot of time to relax and do things that I enjoy. It was a very happy, sustainable lifestyle. I was waiting to go back to work more until my son was in kindergarten. I can't be sleep deprived. He wasn't a good sleeper and he was five and he still would wake up at night often. So, I think I was still a bit sleep deprived having a five-year-old. He was just five when I got sick.
And then the other thing was I was really... I think my building might have been a sick building. A lot of people had weird illnesses. They didn't have good ventilation. I never felt good when I went to work. I wasn't enjoying my job. It was like my job made me feel exhausted. I didn't like being there. I was doing it because I loved my clients very much, in case anybody's here. I love working with my clients, but it was the setup of the job where there's a lot of stagnant time. Also, you're in a window of this office and you didn't really get to interact with people unless a client came. And if nobody showed up, you kind of sit there twiddling your thumbs for an hour. I found it very kind of exhausting in that. The part I work with the clients, that was the part that was energized with the rest of the atmosphere and the whole setup. The structure of the job was very exhausting in the physical space with no light. So, those were the things that I think contributed to it.
Dan: Okay. Yeah. I mean, nothing severe or notable happened? So, I mean, that makes it a little more confusing when these symptoms come on, doesn't it?
Mollie: Yeah, exactly. I didn't have the illness--.
Dan: Maybe like a car accident or have a, you know, severe flu or something like this, then you just go, "Okay."
Mollie: I've heard that subtle beginning is unusual.
Dan: Yeah, it happens. It happens quite a bit. Okay, so now--.
Mollie: Although I did find out that the coxsackie virus can cause that kind of chest pain, dyspnea, that whole syndrome might have been that coxsackievirus.
Dan: Did all those symptoms persist during those four years?
Mollie: The chest got... It got better. In the beginning, it was terrible. And it was all the time and I could talk on the phone without losing my breath. And then later, it was one of those things that would come and go, like pop up go way. The chest pain would pop up and go away.
Dan: Okay. So, at the four-year point, basically, you've still got all the symptoms that you had throughout the illness.
Mollie’s ME/CFS & POTS recovery turning point; ANS REWIRE
Dan: Okay. So, then you come across some email and you hear one of these sorts of programs, or someone suggests that there might be a way out of the illness. What are you thinking here? You've been to all the doctors, you know. I mean, why are you looking at emails?
Mollie: I think I got the email because I had joined some CFS group, which I started doing, I think the last two years, which I found really helpful to be on email groups or internet groups. And then, I was sort of hoping I would try medication. And it was really, it was hard, because I try something and I get my hopes up, even though I'd be like, "Don't get your hopes up." And then I get my hopes up and then it wouldn't work. It would make me sick. It made me worse, I'd have to recover. So, I had gone for maybe even six months without trying anything. I'm not sure exactly. I think it was like six months since I last tried anything to help me. And so, it's kind of feeling like it was time.
My husband refused to let me give up. He'd always said he believed that I was going to get better. He just always persisted that I was going to get better. I didn't believe that but he really held on to that for me, like you will get better.
So, it was time to try something when the email came. And I guess I thought why not? I had seen some of your videos and checked some stuff out. I thought... I also got a little put off. I thought it was like mind over matter, so go a little bit in it because I didn't watch the whole thing because I was exhausted. It didn't... I felt like, "Oh, he's saying it's just mind over matter." I'll ignore him but... So, I saw that there was a course and I thought, you know, I knew that there were protocols for getting better but they were in books and I couldn't... like the effort of trying to create a program and do a protocol and kind of invent that for myself. I just didn't... I haven't felt up to it. So I thought, well, somebody is going to set this all out for me. I'll try it. What have I got to lose? It was that set up as a video course, that it felt easy. Like I didn't have to... because what was so upsetting and difficult about chronic fatigue was feeling like I was going to have to figure out how to get better myself. And that was completely overwhelming. I didn't feel like I had the energy for that. And also, to take care of people and do what I needed to do. I guess the appeal was like, "Oh, somebody is going to do it for me."
Dan: It would be easy.
Mollie: Someone will tell me what to do and I'll just do it. It's easy.
Dan: Was it easy?
Mollie: Actually, it was.
Dan: Okay. I expected you not to say that. That's interesting.
Mollie: it's easy. I'm a very structured person. I'm a detailed oriented person. I like things that are sort of set out in a way and you follow the steps. I enjoyed that. So actually, yeah, I found it... I mean, parts of it, meditating is hard. Meditating is always hard. But yeah, I did find it easy. The thing that makes it easy though is to tell people about... when I'm telling them about it is that you don't do it all at once. Like, it's very gradual. Like you just do one part and you get used to doing that. And then you add something so you're not overwhelmed. And I love watching the videos every day. I look forward to it every day. I look forward to watching my video. It was, yeah. I found it quite fun. I find weird things fun. I'm the kind of person who found balancing their checkbook fun when people still balance their checkbook.
Dan: Maybe you should have been an accountant.
Mollie: I know. I should've.
Dan: So, okay. Well, I mean, that's great. I mean, but now we're talking about building up and doing all the strategies. And obviously, you pretty quickly got over... You recognize that it wasn't mind over matter because... Did come through for you very early in the program, or did you...?
Mollie: I found the introductory video.
Dan: Yeah. So, you listened to those again, sort of thing?
Mollie: Yeah, I watched the introductory videos and then I decided I was going to do it. I was really excited about it. Part of me was excited about it, but part of me didn't believe I would get better. It's just going to get my hopes up. But part of me was really excited. Yeah, it was pretty clear from those introductory videos that it wasn't about, like, attitude or something.
Dan: Fair enough. And then, so then, you know, we talked about adding all these strategies. Of course, you said you liked it because it was over time. It wasn't like immediately you have to do all this stuff because, you know, most of us can't do anything, let alone all this extra new stuff to get better. But, I mean, how did that work? I mean, you know. I guess one of the questions I get all the time from moms is, how am I supposed to do all this? I'm struggling to look after my child. I'm struggling to do the housework. Now, I'm supposed to make this my number one priority. You know, I don't live in some sort of utopia.
Mollie: Well, it wasn't all the time consuming. Like the time commitment, the only time commitment was really the meditation, the video. In the beginning, the exercise was so brief. I'll talk about that later. But in the exercise, that's like 5-10 minutes. And the meditation is like 20 minutes in the video. It's only an hour and a half a day max, I would say if it was the video. So, the time commitment and also the energy, you know, meditation doesn't take energy. It didn't take energy for me. I guess the nap also was a time commitment for me, the rest. So, that's maybe two and a half hours.
My son was in school so I just did everything when he was at school. And I would do the video in the morning when I have a little energy. But if you could get two and a half hours a day where you weren't watching a toddler, like I could do most of it with my son around because he was nine. But even a toddler, if your toddler was in preschool or something for just a few hours a day, you would have time to do it. Because most of the stuff is actually restful and relaxing. The only thing that takes energy is a small bit of exercise. You're meant not to overexert so that's going to be very short. It shouldn't be tiring. If it's tiring, you're doing it wrong. So yeah, it wasn't. I feel like the diet kicked in pretty quick. It helped me have more energy too. So like, as you're doing it, you're getting more energy, so you have more energy. I didn't find it at all problematic. I was worried about it being problematic with having my kids but it didn't. It was fine. I just did it while he was at school.
Dan: Okay, great. I think that's a really interesting approach when people feel like, "Oh, I have to do all this. I have to do this." I actually speak to people about this so it's really interesting to hear that coming from you today is that the strategies are not an extra job. The strategies are there as a relief. So, what can you say with the rewire process? Oh, now I have to rewire. No, no. Now you get to not have to do the other stuff.
Dan: It puts the burden away. It doesn't have to...
Mollie: With the whole thing with the posture, how you have liked your posture when you're... I remember the first time I was doing it and I was at the fridge and I was like, "Oh, get this thing out of the fridge." And then, when I changed that, I felt better. So yeah, instantly I was actually feeling better when I was doing things
Dan: Was that bizarre? Was that surprising?
Mollie: It wasn't. It wasn't, I guess. Yeah, it was but, in a way, it made sense that I had become so defended.
Mollie recovers particularly quickly from ME/CFS & POTS
Dan: Yours I suppose are... I suppose a quick recovery, I would say. I think many people take longer. I think it's important for all people not to have too strong an expectation. When we have one positive expectation, we want to do what we can to move forward. But sometimes timeframes can be unhelpful because if we don't meet them, we think something is wrong or, you know, this kind of thing. But yours was very rapid. Did you sort of find that it was quite linear? Did you find that after two weeks, after four weeks, that you kept improving? Tell us a bit about your experience?
Mollie: It's so hard to remember, honestly. I think it was pretty linear. I don't think there was a lot of... I think I shouldn't have gone off all the foods right at once. I was careful about the caffeine. I took like a week off caffeine. But I went off all the other sugars and alcohol and everything and changed my diet overnight. And so, I had cluster headaches in the beginning. I already had migraines. And then, I had my first cluster headaches because I think the detox from going off all that stuff. And just changing my diet so radically was a lot different approach. I would like to give people the advice to like, take out one simple carbohydrate, and like a few days later, take out another one. And then like a week later, take out alcohol or caffeine and just do it in a more thoughtful way. Especially if you have headaches, I would say. I'm not sure what hit everybody like that. But it was the problem.
Actually, I was fighting through these cluster headaches for the first several weeks. And then when the headaches went away, I realized I was feeling quite a bit better after you know that first month because I think the cluster headaches lasted about a month. Then, I was feeling quite a bit better. And then, it was just this very gradual improvement. When I started mapping, I noticed a big improvement. The best that you have people do, I would actually fall asleep almost every time. I started to notice that my afternoons were just improving really, really quickly. Whereas before if I took a nap in the afternoon, I would have been be a groggy mask. If you're not doing everything at once then that was my experience. Things don't help. Like, I tried to meditate and it didn't do anything. So, doing everything it was. So yeah, it was pretty... It was rapid. And it was pretty, like pretty straight up. I didn't have any backslide. I kept waiting for them and I never had them. I don't know.
Dan: Obviously in the beginning, I mean...
Mollie: It was coming and going like they always did but that was just gradually.
Dan: Yes. Well, obviously in the beginning, you didn't believe it would work because you've tried everything else and it never worked.
Mollie: But part of me sort of believed everything would work because I'm an optimistic person. I didn't believe it would work and another part of me every time I tried a new medication or something, I also believed it would work.
Dan: Yeah. I guess, did you find that your belief changed as you progressed in the program?
Mollie: Yes, very much.
Dan: Was that very quickly? A couple of weeks or?
Mollie: No, I can't remember. But it happened so fast. I mean, because I started the program in March and by August, I was going on a week-long vacation that required like a five hour car trip. And so, it was only like five months and I was pretty much completely better. So, I don't know if I'm... I can't remember. I can't really wrap my head around it honestly. I was just going with it.
Dan: What was your husband and your son saying?
Mollie: They were really excited because it was pretty clear. I would say once the headaches... After a month, it was pretty clear that something was happening. In the beginning I was like, "Oh, I'm a little better." They were very excited. My husband took the turn of being more nervous and saying, "I don't know if you should. I don't know if you should. I really think you should go on vacation. Do you really think you should do this or that? You should go to this party." You know, he would start worrying about me. He got nervous.
Dan: Because every time he did in the past, obviously, you had very severe backlashes doing this for years.
Mollie: Yeah. Yeah.
Dan: Do you remember the first time we actually went out and did something that, you know, when you virtually never had?
Mollie: The first time I went to... Okay. Wholefoods? So, if they have this store setup, you have to walk, I want to say probably it's probably almost a quarter mile to walk from the entrance to the, you know, go through the aisles. By the time you get there, it's really slow. It was always daunting. It was one of the stores where if I went to get something there and the rider cart wasn't available, I'd drive away. I couldn't if I couldn't go on the sitting cart. I remember going to the grocery store for the first time and getting to the checkout and feeling fine. I just felt fine. I was totally normal. Where in the past, when I first got sick, I had tried to do the shopping a couple of times and I would be so sick by the time we got to the checkout that I couldn't figure out how to use the credit card machine anymore because one of my cognitive impairment was so bad that I couldn't figure out how to pay.
So, that was really exciting but the vacation was the big... going on that vacation was really... Oh, I know this is a little sad but in July, my son came down with a severe fever and was extremely ill and had to go to the emergency room a couple of times. And then we were going to all these specialist appointments. I was doing all of it. The first time we had to take him to the emergency room, my husband said, "Do you think you want to go?" He was worried about me because hospitals are so exhausting. I said I can do it. And I did it. I was fine. And the next day, I was fine. I think that was the big moment, actually, when I took him to the ER. It was this long, you know, long and drawn out. And the next day I was fine. I was still okay after that. And then I was able to take care of him and do all his medical stuff and nurse him when he you know. I stayed up late with him when he couldn't sleep, he was in pain. And I was fine. And then, we went on this vacation for a week with long car trip and going to the beach. And I was doing all the cooking for everyone and I was fine. We got home and I was actually more energetic than anybody else because I was living this pure healthy lifestyle, healthy food and no caffeine or alcohol. I had more stamina than anyone actually after that.
How Mollie used exercise to help her recover from ME/CFS & POTS
Dan: You started exercising quite... obviously, within the framework that was presented. But I mean, four months, you know, into it or five months when you had recovered, I mean, what kind of exercise where you're doing?
Mollie: A little under a mile from our house, there's a mountain and it's about a mile up and down. I started hiking that every day. Well, first, I would drive to the mountain and then walk like partway up and then come down. But after about a week I was hiking the mountain and then I started walking to the mountain and hiking the mountain. Then, I wanted to run to the mountain and hike but actually my knees didn't agree with that so I stuck with the hiking. So, yeah. And I started doing yoga almost every day.
Mollie: Pretty intense yoga.
Dan: And then, did you do a lot of other activities besides hiking up the mountain, the daily hiking? Did you do lots of things on the weekends and things like this?
Mollie: Well, that... See, the thing is then my son was sick so I was really taking care of him because he couldn't do anything then. It went from me being stuck at home, to him being sick at home. He didn't go to school or anything. He was really ill. But he's better now, for anybody watching. He's well now. All's well that ends well. It had nothing to do with my chronic fatigue although I made him sick somehow. It had to do with that. It was a totally separate issue. But, yeah. So, we were pretty much homebody. I started and fired the cleaner. I had somebody coming in every two weeks to do the heavy cleaning because I could not push a vacuum. That was one of the things. I couldn't vacuum. It was impossible.
Dan: Yes. This was while you were sick, you mean?
Mollie: Yeah. When I was sick, I couldn't vacuum. It's just the thing. I couldn't do it so my husband was taking care of our son, trying to give him some fun on the weekends, working really hard. And so, we had a cleaner. I fired the cleaner. That was a big one. I was like, "I don't need somebody to do this for me anymore. I can do this."
Life after recovery from Postural Orthostatic Tachycardia Syndrome (POTS) and Chronic Fatigue Syndrome (CFS)
Dan: Fantastic. So, tell us. Since you've recovered, what have been some of the great experiences? I mean, you mentioned you went on a long drive and a holiday. Is there any sort of other particular experience? I mean obviously looking after your son whilst he was ill.
Mollie: That was the biggest thing for me because I don't know what I would have done because I just wouldn't have had the energy that he needed. He needed me to have so much energy for him and just be completely available. Not to mention all the doctor's appointments and the phone calls and the school and all that stuff. And so, being able to be there for him when he was sick. That was amazing. And also, I started to be able to help take care of my stepfather with Alzheimer. And also, I took on a lot of projects for my family, my mom to not have her be overwhelmed. I took over managing the estate when her last relative passed away, and I'm still dealing with that actually and helping herself to a property. It's like really able to step up and do those things that I had really been sad about not being able to do before. And exercise. I mean, I love it. Now I go for it. And I'm running now. My knee is better so I run. I love that I can just start going in the morning. And if I want, I can just keep going all day. And I think that's more than like some big peak experiences. Like, I get up in the morning and I could go for a run, then I could clean the house, then I could go to the store. And then if I want to do something else after that I could do something else. And if I want to go to a movie after that I can do it. I can do it all.
Dan: Isn’t it amazing. I always ask if there's any particular experience like going into holiday or this or that. But I mean, for most of us, I think the everyday experience has more amazement and joy out of it than any sort of fancy thing.
Mollie: Oh, and having friends again too. I started making new friends because I didn't make... It's impossible to make friends when they have to come talk to you on your couch, but only at certain times a day.
Dan: You don't want them to be in the room. That really makes it hard.
Mollie: Yeah, I got social life again.
Mollie: And my sis is just well, so now we started doing things as a family. We had three big vacations together. We drove all the way to Florida. We drove to Florida and spent a week in Florida. That was really wonderful. Wonderful, wonderful.
Dan: Wow! What were your other vacations?
Mollie: We had a vacation at a Lake House in Spofford, New Hampshire. And then we had our... At the Jersey Shore, another week there. So, it's been a lot of beach time. I love it. Yeah.
Dan: Did you have to pinch yourself when you were standing on the beach, you know, running around as a family?
Mollie: Oh, my God.
Dan: I mean, was that surreal?
Mollie: The first time off there was for doing it. And we were all well, I just decided. I was so happy. And then, when Isaac was better and it was the first time since he was better than I was happy again because... yeah. Because when I'm sick, I always just used to say to myself, at least it's not him. Like, it would be so much worse if it was him. I'm glad he's not sick. And so, when he got sick, this really is the worst thing that can happen. I watched what had happened to me happen to him, and ended up giving him and saying he should be at school. And I could see it was very clear that he couldn't cope with being at school that he was too ill to be at school. So, to see him struggle, it was probably more emotional than my own recovery, just to say.
Dan: For anyone listening, you know, your son's experience and illness was completely unrelated to CFS and what you have so that people don't get some sort of misconceptions there. And he's good now, which is great to see.
Mollie: Yeah. And in fact, he just had his first day of school and he loved it. And yeah, I think I said that, and it was great. He came back full of energy.
Dan: Yeah. It's quite a surreal experience. I think what makes it so amazing is that I think when we're really sick for a long time, and severely sick, you know, like housebound and this kind of thing. Then, we almost shut off the whole possibility of ever doing anything like that moment at the beach, don't we? I know that for myself, when we then experienced it, it's kind of surreal because when you truly in your mind have shut off the possibility of doing it and then it happens, it doesn't feel real. It doesn't feel... I don't know. It's the weirdest thing I've ever experienced myself.
Mollie: Yes. Yeah. You have to shut it off because otherwise you're just mourning all the time. I couldn't deal with grief. I even had like a... If I did something that reminded me of how I used to be, I would just be too sad.
Dan: Yeah. Well, that's how we often withdrawal from life completely. I've seen this with other people because the whole idea of... It's like we don't need a reminder of what we're missing out on. And I think when we seek, we end up living this super sheltered life and it's not just about because we're so sick but it's almost because you don't want to have dreams. You don't want to say, "Oh yeah. When I get well, I'm going to do this. I'm going to do that." Because you don't really think it's going to happen. And so, having those kinds of goals seem overly lofty and they just tend to be upsetting. But having said all that, I do find that these are often great driving forces for us to keep going. I mean, did you find that during your recovery that you know, when you started? I mean, did you have dreams and aspirations and things? Or had you just sort of compartmentalized those and put them away?
Mollie: Oh, yeah, I'd really put away. I really numbed out a lot. I'm a very good numb-er. I just numb out until I would turn myself. I'd like to turn myself back, almost like a robot, turn myself off, numb out, be static and throw myself off for my family.
Dan: But I guess the thing is...
Mollie: I've never... I didn't think I was going to do anything more in my life than I was doing. And I put that away. And now, I don't know that and now I have to decide what I want to be when I grow up. Like, who gets to think like this that I have to really think about what I want to do with myself now.
Dan: Well, because actually, you weren't a runner before, were you?
Mollie: No. I wasn't really. I mean, I'd always been a physical person but I wasn't particularly athletic. And I certainly didn't get enough exercise.
Dan: So interesting. Before you've never done something like that. And now you're like a runner, it's like, this must be kind of weird.
Mollie: I'm a very physical person. I've always been very much in my body, physical birth. When you use your body and then you can use it again, it's very exciting. So, you like to see what you can do. Now, of course, I'm 40. I'm almost 45. Well, I guess I'm only 44 and a half. I can't quite build up to things. Maybe a mile is really... a mile and a half are probably all I'm going to be able to run. But I was just thinking about the other day, like, maybe my expectations of how much stamina and physical strength I could build might not be in line with my age. But I want to see what I can do. It wasn't Rip Van Winkle. I felt like Rip Van Winkle because I was 38 when I got sick. I woke up and I was in my 40s.
Dan: Yeah, it was like, "What happened?"
Mollie: It was like I was in this different body and this, you know.
Dan: Well, it's true because obviously there's often a shift in our 40s or this is something we like to think about, but it's a bit of a change in how we feel.
Mollie: This is like a face lift, for me.
Dan: Absolutely. Well, for you it was bigger than most but I mean, obviously people will never recover, you know. They often have no frame of reference for what they should be or able to do or what's normal because, you know, I see people sometimes they've been sick 10 years or whatever. But then you see some people who just completely throw that out the window. And you know, I've seen obviously, some people have been sick for like 30 years and then 70s and then they start running too. I don't know what it is about my program. People start running when they finish. I'm not even a runner. I never said anyone should run. You guys are not listening.
Mollie: You are kind of anti-running, I think.
Dan: Is this your little rebellion by the people recovering in the program? We'll become runners, we’ll show Dan.
Mollie: One of the terrible things about chronic fatigue is that when you're a normal person, if you're feeling a bit sluggish, you're not feeling great, you get up and do something. You'll feel better. You exercise, you have more energy. If you're feeling sluggish sitting on the couch, go get up and do some chores and you'll feel perkier. With chronic fatigue, it was the opposite. I felt sluggish and I got up and did something or exercise, God forbid, I would feel worse and maybe even for a long time. So, I think that's why people run is because running gives you energy. Like, if I run for 15 minutes, I have energy for the rest of the day. So, like this huge benefit. You run and then you just have all this energy and it's like, "Wow! I never thought I'd have that again."
Dan: That was really interesting, Mollie. Just as you're saying this, I should recognize that I actually did the same thing. It was funny. I've actually forgotten because I've never been a runner. And when I recovered, I started running too. I was running for, I don't know, maybe a year, year and a half, and I started really running. Almost like just because I could.
Dan: Just because I could. It's funny. I've actually forgotten about that because I don't run anymore. I'm not into running. But yeah, I was. I was actually running for the first time in my life. So, there we go. All right. As we finish up, I guess the last question I have for you is there any sort of things you'd like to... I mean, obviously, you know what it's like being, how did you call it? Couch girl? Horizontal couch girl?
Mollie: Horizontal girl.
Mollie’s message to others seeking recovery from ME/CFS & POTS
Dan: Having been horizontal girl, you know what it's like to lose the hope and all of that. I mean, is there any other sort of messages you have about recovery or anything else you'd like to say to people listening? Anything we didn't cover, perhaps?
Mollie: I think either you or somebody has to believe you're going to get better. You have to keep trying something. You cannot give up. You have to keep trying the next thing. Just try the next thing that you can. You can't stop trying. You can take a break, because trying is emotionally exhausting and physically exhausting, but you can't give up. You have to try the next thing. I'm really glad I didn't give up. If I had given up, I would still be sick. And who knows, it would have been a train wreck when my son got sick and life would have been getting a lot worse for me. I would have probably ended up really sick because I couldn't cope with his illness. It would have been terrible. So, when I think about that road of not having tried, that's pretty scary. So, I think that's the scariest thing you can do is stop trying and like accept. It's a balance. You have to accept your life or you will be miserable, but you can't give up trying to do both at the same time, I guess.
Mollie: I really hope people try the program because I know I got better fast. I wasn't the most sick person, but I wasn't the least sick person either. I'm a pretty solid case. If it works, then I really think... I really think it can work. When I talk to people about it in the community, people talk to me about it, I say, I think you just have to really do it. And if you're 100%, I think it's going to work.
Dan: Well, one of the things I guess I see when people have faster recovery. I mean, you really went all out, didn't you? Cluster headaches or not, you just did it full on. And, I guess at first that might be a little difficult for people but then on the other hand, as you start to feel better, it becomes easier to be motivated to do more. It's about really climbing that ladder, isn't it?
Dan: First, you can't do anything. But if you do something to help yourself and you feel somewhat better, suddenly, you can do more. I think that's a really important thing for people to keep in mind. So, you don't have to do everything. You just have to do whatever get you most, you know the same bang for your buck, but bang for your effort.
Mollie: Yeah, yeah.
Dan: And whatever you get the most bang for your effort that makes you feel a little bit better, and then it allows you to do more. I think it's about investing wisely. I mean, did you find during your recovery, that when you had that extra energy, did you use that for recovery or did you use it to have fun?
Mollie: Oh, I probably used it to like, cook or clean or do the gardening. Like, re-engage. I used it to just go to the store. I used it to go back to my normal life, honestly. So, with some having fun, but I wasn't trying to party in the beginning. I was cautious. I always treated myself like I was made out of a... like I was a china doll. Until I was really better, I was very careful. I didn't want to go back.
Dan: You don't want to have setbacks. Yeah, you didn't want to overdo it.
Mollie: As soon as I feel better, I was so cautious with myself.
Dan: I think...
Mollie: I was...
Dan: I think for people. Sorry, we have a bit of a delay. I keep cutting you off. Sorry. Yeah, go ahead.
Mollie: It was so long before I was willing to give up the rest. I was afraid to give up resting. Last thing I was afraid to change because I didn't want to, you know, it's like I needed it. I was in bed at 9:30 every night.
Dan: Well, I mean, that's the thing. I have these strategies that support us and help us to recover and then to let go of those strategies because if we're fully well, you don't need all that stuff, right? You can live like a normal person. But to let go of that can be a bit of a journey too.
Mollie: Oh, I used a lot of my extra energy for exercise too. I really handled it in exercise. I was exercising a lot in the beginning actually, which is probably why I hurt my knee because my body... I had no muscle mass. I was rebuilding. And you know, when you're rebuilding, everything can be a little off. I didn't hurt it severely but it did start to act up. But yeah, I channelled a lot of my extra energy into exercise because it was so fun and also, I got so much of a payoff. It seems to be making me better.
Mollie’s distinctions to make exercise helpful with CFS when GET failed
Dan: I know we kind of finished the interview, but I can't help but ask these questions now. For someone who tried graded exercise therapy, I mean, you must have felt pretty jaded about the whole idea of exercise because obviously when you did it, and every time you tried graded exercise therapy, you got so much worse. I mean, did you not have an aversion to doing physical activity?
Mollie: I did. I was terrified of it. I thought it was a terrible idea to do exercise, but the way it was laid out... I actually bought a... because I've tachycardia, I bought one of those finger meters that would say what my pulse was. And when I started doing the exercise, I would actually keep checking my pulse to make sure that my heart rate wasn't going too high or my blood pressure was falling too low. Like, I would make sure I was in good zone or else I would turn around. So, I was very careful. In the beginning, I think I was walking down the street, three houses, three houses back. So, I was just very, very... But I bought the whole idea that you can't make yourself tired. You don't increase it just to increase it. You increase it, if you can. You increase based on you feel fine. You only increase it as long as you still feel fine. And that's what the graded exercise didn't do. It is a graded exercise so just keep increasing your activity level and you'll get better. Of course, that means--.
Dan: Stop pretending to be so tired.
Mollie: Yeah, and then you get to be sick in bed for a month. That's great. So, this is what happened to me. I ended up back in bed for a month. But yeah, it was the cautious that made it feel safe, actually. I started doing a bit of yoga with the walking too and that is very safe. I wasn't jaded because it was... I knew how to stay in my envelope. I was focusing on staying in my envelope. I was super cautious. I mean, literally, three houses down and back. That was it.
Mollie’s final words about her CFS/POTS recovery
Dan: Yeah. Well, it's a real good start somewhere. So look, I want to thank you very much for sharing your inspirational story, Mollie. I think it's fantastic to hear you turned your life around and how you and your family found happiness again.
Mollie: Yeah, and I can't thank you enough, Dan. I really. I mean, we're also grateful to you. The whole family is grateful to you, all of your support, and also your support through Isaac's illness, even though it wasn't related. You were really... It helped a lot to have you.
Dan: You're totally welcome. This is what we do. This is what we do and do it for. I've talked to people for many years about this whole concept of paying it forward. There was a movie called Pay it Forward but with a really terrible ending so don't watch it.
Mollie: I never saw it.
Dan: Only watch the first half of the movie, you know, about three quarters, then you have to turn it off. Right? I always say this is why I started doing recovery interviews. Way before I started ANS Rewire. It was just like every story that we hear where someone who recovers can create another one, can start a new journey. And the more of these we have, it's exponential. And then, sooner or later we're going to get to a part where it's generally accepted that getting this illness, doesn't mean it's a life sentence.
Mollie: Yes, that would be amazing. I've been proselytizing all over the breakthroughs talking about it. I'm very open with my illness. And then people tell me they know somebody.
Dan: I just want to say just to finish up, thank you very much for sharing your story, Mollie. I think it's really, really inspirational. I'm sure people will appreciate hearing your journey.
Mollie: Oh, thank you. Thank you so much, Dan.
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I am chronically exhausted. Thought it might be perimenopause or type 2 diabetes? It could be CFS also.
I am chronically exhausted. Thought previously it was perimenopause or type 2 diabetes? Now, I think it is CFS. I sleep alot.
Thank you, Mollie, for sharing your story. I am also a psychotherapist who has just gone on medical leave due to CFS. I could relate so much to aspects of your journey. By the end I was tearful with hope and feel inspired to “keep trying!” I am 35 and need to believe life will flourish again. Thank you for sharing your brave story of perseverance. I’m going to keep taking the next step.
Thanks for this story Mollie and Dan. It resonates a lot with me as a mum and a psychologist! I am very much in the thick of recovery at the moment but feeling so hopeful.
Thanks Molly. your story feels so familiar! Your account of how you cautiously managed to exercise was particularly useful as i’m just getting out and about and can see i’m too impatient! It was also heartening to learn that you have maintained your recovery for the last year or so. I have been better before, and never quite believed that this illness could be gone for good. best of luck