Jo Thomas’ POTS & chronic fatigue recovery story

Liz: Wonderful. Thank you so much. So would you mind sharing, Jo, your purpose for sharing your message today with our audience?

Jo: Yeah. Sure. So it’s to help others basically through a process of raising awareness, sharing of knowledge and providing inspiration and hope because, when we suffer with chronic fatigue, it can often be a lonely and isolating place.

And to hear that there’s other people out there that have been there, who’ve been through it, who understand, who get it, who believe you, and have overcome this challenge can be very inspiring and powerful. 

– Jo’s purpose for sharing her story

Liz: Yes. So can you tell us a little bit about your life before chronic illness and how it began?

Jo: So my life before chronic illness was, you know, a really good one, it was full, it was enjoyable. It was, you know, a normal life. And just before I got sick in 2017, I had just celebrated 10 years of marriage with my husband. 

We have two wonderful children. I was really enjoying my career working part-time as a nurse. Everything was going well. 

I was really happy, but admittedly life was busy and full on as it can be with modern day life.

Jo: In 2017, I became unwell with dysautonomia, which is a process in which there is dysregulation of the autonomic nervous system, which regulates the involuntary nervous pathways in our bodies, the things that happen without our conscious thought.

So for example, regulation of our heart rate, blood pressure, breathing, our temperature control. So all these essential, fundamental things that go on.

For myself with this condition, the thing I noticed most was POTS.

So that’s postural orthostatic tachycardia syndrome. Basically, if we just take it down to its most simplistic form, when we go from being laid down or sat to stood up, there is an excessive acceleration in the heart rate, which doesn’t calm down.

And when your heart rate is just beating along, like you’ve been doing an aerobic workout all the time, you soon become exhausted and you experience other symptoms. 

– Jo describing how POTS caused her debilitating fatigue

Which I’m sure we’ll talk about at a later point.

Liz: Yeah. Was there a trigger, an environmental trigger, a pathogenic trigger, that triggered this?

Jo: Yeah.

I’d been out, walking my dog one afternoon, came home to find I had a tick adhered to my skin. 

I just noted it, removed it, body and head complete, and just went on with my day.

The next day however, when I woke up, I just didn’t feel right. I felt really, really weak and odd. I was struggling to get ready. It felt like I was plowing through treacle. I was due to go to work. I said to my husband, I just don’t feel right, but I think I’m worn out. I’ve been so busy of late.

I’m going to go to work. And when I come home, I’m going to have supper and go to bed early.

So, off I went to work, got to the hospital car park. It’s not too far from the hospital car park to the side entrance of the hospital.

And on that short walk around, I just started to feel really odd. I felt a bit lightheaded and dizzy, but nothing too much. I thought, oh, I’m just a bit tired. And then I was aware that I felt really short. Like my legs didn’t belong to me anymore. And I thought, gosh, this is such a strange feeling.

It felt a little bit like I was on a boat, everything was just swaying. 

So I thought right, pretty close to my department. I’ll just get in I’ll go to the changing room and sit down, and in a few minutes, this very silly feeling is just going to pass. But once I got there, the feeling of a rocking boat continued, and it was getting worse.

And I thought, oh, am I going to pass out? So I was sat on a chair. I took myself to the floor to sit down, and then I was starting to feel a bit better.

I’m very British. I thought, “I’ll get a cup of tea, a cup of tea is gonna fix everything.”

And I went out to get this cup of tea and really didn’t feel right.

A colleague came into the changing room and, first of all, she was like, “Why is Jo near the floor?” 

And, she just said, “You really don’t look very well.” And I said, “I don’t feel great.” So, you know, she was a nurse, she kicked into nurse mode. She did some obs, so basic observation, like blood pressure, heart rate, oxygen levels.

I mean, they were all pretty fine, except my heart rate was up slightly. And, uh, you know, I said, “Oh, I got bitten by this tick yesterday. I think it’s too soon to be feeling symptoms if it is that.”

And then before I knew it, my whole team was there, and I was just feeling very self-conscious and they wanted me to go to ED, but I felt like, actually, I’m just really tired.

I told my colleagues, “I will go home, and I’ll try and get a GP appointment today.” So my husband collected me. I went home, and I just slept and slept. And my husband woke me when it was time to see our GP. Went to see him. And he said, “Oh, you really don’t look very well.” And I explained what had happened. And, uh, he did an ECG.

I think you call it an EKG in the states.

Liz: Mm-hmm.

Jo: And, you know, I didn’t know this was going to happen cause I didn’t know what was wrong with me at the time, but because I was laid flat, all the symptoms I had started to improve.

He did some bloods. He did a referral to a cardiologist.

To be honest, I think it was a little bit role reversal in my situation. I was like, “Gosh, he’s been a bit dramatic because all I need to do is go home and sleep.”

And he was like, “Oh no, Jo, I mean, given your age and the symptoms, it could be your thyroid. It could be an arrhythmia. It could be something with adrenal glands throwing off bursts of adrenaline.” So, I thought, “Okay, fine.”

If anything, I just got worse.

Jo: Other symptoms crept in, but what my lovely GP did do, he gave me something, what was it called. 

A Kardia. A little ECG monitor you put on the back of your mobile phone. You hold it with two thumbs and it does just a baseline, ribbon-strip ECG. 

So, I was doing that on and off, and I was starting to notice some patterns. I was noticing if I laid flat, I felt better. 

If I went from touching my toes to stood up, I just had to do it twice, all the symptoms would come back.

This little ECG trace was saying I had something called AF, atrial fibrillation. It’s an arrhythmia of the heart. When I was really looking at this trace, I was thinking, I don’t think it really is [AF], because when this was all happening, I think there was a big adrenaline surge. I was literally shaking, and that was interfering with the ability for this device to read. 

So I then decided Google, I’m going to Google the reliability of this ECG device to see how reliable it is. And, the results showed it was actually quite reliable. And then when I was reading the reviews, I could see that some people were using it to diagnose POTS.

And I remember as a student nurse looking after a patient who had a medical history of POTS, but I couldn’t really remember what it was.

So I looked it up, and lo and behold it read like textbook example of what was going on. 

– Jo, on how her medical training helped her with her own case.

And I thought, “Oh, okay, this makes a bit of sense.” And then fortunately, I had a friend who was a nurse as well.

She was married to a cardiologist. I sent through the ECG traces. And I said, “I don’t think it is AF, I think I might have POTS.”

And I thought he would think, “Well, it’s quite typical of Jo to maybe go and jump to the conclusion that it’s something a little bit more on the rarer side.” And he said, “Oh, no, I don’t think that is AF, and maybe you are right.”

So I was doing a lot of looking on the Internet for some answers. I came across a website called POTS UK, which to the audience, if you are looking for any resources, it’s a fantastic one to look at, and it listed some physicians that helped with diagnosing and POTS management.

There was one [a POTS specialist] in the trust where my friend’s husband worked, and lo and behold, they shared an office.

So very fortunately, he spoke to her, she said, “Oh yes, I think we should try and get her referred.” GP, happily referred.

So quite quickly in the space of three months, I had a diagnosis and appropriate management.

Liz: Wow and yeah. That’s not the story for so many people, but you are a nurse, you know these people.

And so when you researched yourself, it might have given you more credibility with them because they knew you, but it’s often not the case that people get diagnosed within three months with these things.

But wouldn’t it be great if everyone was diagnosed within three months! – Liz

I remember myself, I had a bunch of heart tests and they were like maybe it’s A-Fib [regarding one episode I had], but we don’t know. And I had never gotten the tilt table, the POTS test, because I don’t think that was as well known.

Jo: So, I didn’t have a tilt [table] test. It was just basically, she [the POTS specialist] checked my blood pressure and pulse laid down, then stood, and checked it again at various increments to diagnose.

It’s very easy to diagnose. We don’t need expensive tilt table tests.

Liz: Alright. So now you have the appointment with the person who specializes in POTS. What was their approach and how did that practitioner help? 

Jo: So my GP had put me on a beta blocker initially to bring down the heart rate. But it didn’t really help me because it just dropped my blood pressure. 

And I discovered through this process, I need a slightly higher blood pressure to be operational.

So she [the POTS specialist] switched me to a medication called Ivabradine, which lowers the heart rate, but works in a different mechanism to a beta blocker, and it maintained my blood pressure. 

And then from that point, probably another three months on again, plus some other changes, my symptoms started to stabilize. 

And she [the POTS specialist] was saying to me, eat small amounts of food regularly, get some rest periods, I think that was probably about it. She had other things she was going to add in if that didn’t help. But it really did. It stabilized things out.

Liz: Yes. And thanks for clarifying about that because I know the beta-blockers are common first line treatment for these things, but for some people it can lower the blood pressure, and that can of course, result in symptoms. 

I will include the name of the medication you listed for people to ask their doctor about it. And just again, this is not medical advice. This is for informational purposes only. 

Disclaimer: Nothing on this channel is medical advice or meant to be prescriptive. Jo informed me that Ivabradine is contraindicated for pregnant women or women planning to become pregnant. Please consult a trusted medical professional before taking or stopping any medication.

Liz: But I know for myself who already has low blood pressure that is something to keep in mind. 

And you had said she had talked about, eating small meals. One of the recommendations I hear is, for some people they increased salt. Was that one of them that you got, or did you try that?

Jo: Yeah, the number one was to increase the intake of salt. 

And she said, you know, keep it simple, have a bag of crisps every day.

I mean, who doesn’t love hearing that? 

That’s amazing advice to hear from a cardiologist, isn’t it, “Eat crisps.”

And there’s other things that can help like wearing compression stockings just to help increase that venous return from the legs up, to help when you have that orthostatic intolerance.

Liz note: There are other things to increase sodium intake like Quinton Hypertonic seawater viles (contraindicated for pregnant women), adding Himalayan salt on foods or a very tiny sprinkle in water, and more, for those with low blood pressure vs potato chips / crisps. This is not medical advice, I’m just sharing what others have shared with me.

Jo: So the orthostatic intolerance is this inability to maintain yourself when you are stood.

And it leads to a lot of symptoms, like feeling light-headed, dizzy, like you’re going to faint, or you may experience syncope, which is fainting. So, all those things make it quite difficult to lead a normal life.

Liz: Yes.

Thanks for explaining that so well. My channel as you know, it primarily features people with ME and CFS, though many people with ME/CFS, I would say 20%, do have postural orthostatic tachycardia syndrome, POTS, and everyone with ME/CFS also has dysautonomia [it seems].

So thank you for breaking that down. POTS in itself is a cause of fatigue.

So can you explain how POTS causes fatigue and maybe the difference between that and ME/CFS? My understanding is that ME/CFS is the inability to recover from exertion with the post-exertional crash that comes two hours to two days later with neuro immune symptoms. 

And POTS, which many people ME/CFS have, it’s more immediate. So can you describe that?

Jo: Sure. So you’re correct that so many people with ME and chronic fatigue syndrome also experience POTS and autonomic problems. The two are quite often interchangeable and combined.

So with POTS, when your heart rate keeps on accelerating, you are burning a lot of energy and then you end up with an energy deficit. You do not have enough energy to maintain what you need to do.

And essentially if we break down, chronic fatigue syndrome into its most simplest form. That’s what we’ve got going on. You have not got enough energy to be able to function.

I feel sometimes for chronic fatigue, it’s actually a symptom rather than a disease per se.

There can be many causative factors, so POTS can lead to it. Hormonal problems can lead to it. Parasites, virus, bacterias, can lead to it.

And we certainly know about post-viral syndrome leading to chronic fatigue. And we are hearing a lot more about it in the media because of Long COVID.

So for me, that’s where I sort of see it all, from having all these problems with it myself, it leads to a relentless fatigue and you can get other symptoms that people with ME and chronic fatigue syndrome describe. You get brain fog. You get aching joints.

You get that paradigm of being exhausted, but not being able to sleep. Or you can sleep and you wake up unrefreshed. 

And all of these things can be going on whether you’ve just got POTS or with looking at ME and chronic fatigue, the whole worlds of these problems come together, and they can be experienced in a very similar fashion.

Liz: Wow, that was so brilliant. I have never heard such a spot on, but also easy to understand explanation of the conditions and how chronic fatigue is a symptom of these conditions.

All right. So thank you for that wonderful explanation. Breaking me CFS and POTS down for us and dysautonomia.

A follow-up note regarding medical management:

After our interview, Jo also explained to me that specifically with POTS, medical management is often steered in the direction of attempting to correct heart rate and improve venous return on standing. 

Then for both ME/CFS and POTS, there’s pacing and lifestyle changes to help support and improve mitochondrial function.

As a friendly reminder, nothing shared is medical advice, nor meant to be prescriptive, and we’re only sharing our perspectives. 

Liz: So Jo, what were your former key health challenges and functionality levels?

Jo: The main symptoms I was experiencing was relentless, absolutely relentless fatigue, brain fog, palpitations, shortness of breath, orthostatic intolerance, as things progressed, I started to get aching burning joints. I felt weak, dizzy. 

I had blurred vision in my peripheral vision, and actually if my POTS is coming back, if I’m overdoing it, that’s what I’m aware of. 

I was having, GI disturbances of reflux, finding it difficult to swallow and eat, but being hungry. Sometimes my legs would feel completely numb, and they wouldn’t want to work for me.

At my lowest, I would say on a bad day, I struggled to get upstairs.

I would do the flight to stairs, and then just have to lie down and just thought, “My goodness, what is going on? When is this going to end?” – Jo

And I would be so tired, I could cry, but I couldn’t sleep. 

And it’s that paradigm that people talk about with chronic fatigue, you’re exhausted, but you can’t sleep.

Liz: Yes. 

That was three years of my life. and I know for many it’s more so, yes. 

Liz: So you’re on this drug that helps with your POTS symptoms, and it helps stabilize things after about three months, and you’re starting to make some diet changes and. also sleep.

So what are some things that you did to improve your sleep?

Jo: When I was still taking the beta blockers, I was gradually getting worse.

I went into survival mode, and I was chasing my day with sugary snacks and caffeine just to get through.

At the end of the day, I still had two daughters to take care of, even though I knew better not to do it. So I completely understand how people fall into these loopholes. 

But my sleep was starting to become affected. Once I had the Ivabradine and my symptoms stabilized, I felt I had the strength to start cleaning up some of my diet with what I was doing. 

The caffeine got reduced right down to just to one coffee in the morning. And it was usually decaf.

The sugary snacks and the sugary foods went. I mean, I wasn’t eating a vast amount of highly processed foods, but I was eating some. They went.

And I know some people promote different things for dealing with chronic fatigue and boosting your overall energy production. So some people may say, follow a vegan diet. Some people may say, follow a ketogenic diet. 

I didn’t have a particular diet. I just went clean. I just cleaned it up. And what I was doing was just basically trying to cook with real foods. So basically the food you have there to prepare, looked like it would’ve done coming from nature. We don’t need to overcomplicate anything I feel in life.

And I think particularly when you are dealing with chronic fatigue, you need things to be as simple as possible. Admittedly, to cook from raw requires a bit more time and energy. 

So I cooked in batches, bulk cooked and froze a lot of food. That really helped. 

And, I just started to pay attention to what food seemed to help my symptoms or made them worse.

So I do believe we all respond very differently to different diets. And, there’s a chap called Tim Spector. He’s a professor of genetics and he talks about the gut microbiomes and how the microbiome is different in every person.

We all respond differently to different foods, but I do think what is key is we don’t want too much sugar.

We don’t want too many refined carbs. We don’t want highly processed food and alcohol. 

I was maybe sometimes having a drink thinking, well, that helps me get to sleep. But I learned actually, and started to notice through my own patterns that wasn’t the case. 

It [alcohol] helps you fall asleep occasionally, but it just fragments your sleep. 

It’s, you know, not a winning combination.  And I think a lot of people think a drink can help you sleep.

Liz: But now I know there’s . Like biometric monitors, like the Oura ring, and someone was telling me that yeah, the wine, she thought helped her sleep, but then it tells you the quality of your sleep, and it actually was not the case.

So you’re not getting that restorative sleep when we drink alcohol, unfortunately.

Jo: Yeah, absolutely. And also I started to notice when I was having periods of feeling better, that alcohol, even though it wouldn’t make me drunk, it made me feel much weaker. So it just, wasn’t a good one for me.

So I’m not saying people shouldn’t drink alcohol, but in my situation I was better without it.

I mean, prior to that, I just felt awful all the time. I couldn’t tell what was what, and so yeah, so I cleaned up my diet, did those things to help my sleep.

I had a bedtime routine. I made sure at a certain time I was getting ready [for bed]. I was having time to wind down. I was putting the phone, the laptop, and the iPad to the side.

So you’re not getting that blue light stimulation. Sometimes I would have a cold shower just to bring down my body temperature, that really helped. And also with POTS, for me, the orthostatic intolerance was worse on a morning. So not to be showering then was much better for me.

Liz: Oh, okay. So you had a whole nightly routine and that included the cold shower that included putting your devices away. What was your device cut off window? Did you have a certain time that you closed the iPhone and put that away?

Jo: So, yeah, it was probably about eight o’clock. But I wasn’t a massive one for using my devices.

I mean, I am on social media now for my coaching business. That’s the only reason I’ve come onto social media now. I wasn’t even on Facebook before.

Liz: Wow, okay. So a lot of people. Yeah, they don’t realize how much staring at our devices at 11 o’clock is not helpful or conducive of sleep.

So yes, eight o’clock, for a lot of people that might take some discipline, but it sounds like for you, you were already not a big device person, but still, yeah.

These lifestyle changes add up. – Liz

Liz: So you did also say that you found some supplements helpful, and I know [seemingly] everyone on the journey, we try hundreds of supplements.

So which were the ones that seemed to support your health?

Jo: Yeah, absolutely. So I didn’t want to get down into this rabbit hole of taking a million, various pills and supplements, and feeling like I was going to shake myself.

So I kept it simple. I took a multi that had a good vitamin B complex strength to it. Vitamin C vitamin, Vitamin D. But what really helped me in 2017, for my energy levels was Coenzyme Q10. That was fabulous. And then when I hit burnout from nursing in the pandemic, in the winter of 21-22, I tried D Ribose with Magnesium, and that was great as well.

But admittedly, I was bringing a lot of lifestyle changes together at once. So to say which one was the best, or to say if it was completely effective, I can’t say. I just did all of these things. They were simple changes to incorporate. and I got better.

And I think I also mentally felt better because I was taking control myself. 

I wasn’t feeling so dependent on other people or healthcare professionals. I was just taking care of myself.

Liz: Ooh, very powerful. Yes. and for some people it can feel like we’re lost on Google, but it sounds like you got to a stable place. And now you’re able to have more of a sense, is this helping me? So you could listen to your body. 

Because I know for a lot of people, we don’t know what’s going on, but it can show – like you are a wonderful example of when we get early medical answers, we can then have more empowerment to take action, versus wondering what’s going on.

Note: Nothing shared is medical advice, nor meant to be prescriptive. Not all people react the same way to the same supplements. Furthermore, in the US, there is no official testing of supplements to verify what’s actually in them. Please consult trusted health professionals and listen to your gut.

Liz: So I know you took a holistic approach to healing and our minds are part of our body. And how do the role of mindset impact your health recovery?

Jo: Yeah, so yes, mindset.

When I decided to change my mindset, it was a game changer.

So when I said I wanted to change my mindset, what had been happening to a point was I had been chasing, trying to find out the specific reason, I had developed these symptoms, this dysautonomia and POTS, and wondering whether basically I had Lyme’s disease, because I’d got bitten by a tick and got sick.

I never had that red, bullseye rash, but you don’t always get that with Lyme’s. I did have a blood test done twice on the NHS, the ELISA blood test, and it was negative, but there are some question marks over its reliability. 

I was going along this journey of trying to find more sensitive tests to see if I had Lyme, and it was taking a lot of my energy and focus. 

I mean, it was pretty limited to start with. And then, my friends and my family and my colleagues thought this was a really good way to be going.

And then just one day, I just sat down and I thought about the patients I’ve nursed over the years, and what my patients have taught me throughout my nursing career.

And what they have taught me is that having a good mindset makes all the difference to your health.

The people who felt that it was within them to make improvements, who believed that they could improve, who believed that their focus was to put in place measures that would benefit their health, did really well.

– Jo (insights from her 20-year nursing career)

And I thought, okay, my mindset is keeping me in a slightly negative place.

It was keeping me in a place where I feel dependent on some answers in the future, for me to get better.

Which is fine if that’s what you want to do.

But in that realization, I decided I was changing my mindset to one where I was going to empower myself to put in place changes. I knew that worked from looking after many patients with chronic disease over the years, that made them healthier, have a better quality of life, and they would become more functional.

So that was the game changer for me.

Admittedly, the Ivabradine gave me stability and enough strength to get to this stage. So the medical management gave me stability, and mindset and lifestyle changes and pacing — I haven’t spoken about pacing yet, how important that is — got me to living a full life again. 

Liz: Yes. So we’ll talk about pacing, but I do want to talk more about mindset because that decision to go explore many tests, there are doctors and functional medical doctors who will run any type of test, but the way out isn’t necessarily the way back.

And I myself tried to take antivirals long in, and they didn’t do anything because they only stopped replication of the virus that I already had in my body. So I needed to do another strategy.

And mindset, some people can just brush it off as, “Oh, thinking positive isn’t gonna get me better.”

But it’s not just thinking positive. It’s thinking practical. Like, what is going to move the needle here? 

Because yes, maybe there’s a pathogen that initially caused this, but what we need to do to heal often looks the same, regardless of the specific pathogen that got us there in the first place. Is that something you often see when it comes to healing?

Jo: Yeah, absolutely. I think you said that really well. So thank you for that.

But I represent two sides of the equation as such. I represent Western medicine, medical management. And coaching and an overall more holistic approach.

I feel often the two need to come together, but I had got to a point that when I looked at the facts, and I thought, “If this is Lyme, what can I do about it?”

I’m so past the period for antibiotics, really.

I would have to just look at building my strength. So why don’t I just get there now, because I know how to do this. 

I know how to do this from nursing many people over the years. I wasn’t a trained coach then, but if I was to go back now to Jo in 2017, I would do such a much better job of getting her through. 

Or I would’ve got a coach in 2017 that’s specialized in fatigue. 

Because having somebody there who is supportive, who’s not judgmental. You don’t need to worry about burdening them like you do friends and relatives, and they can walk that journey with you, helping with your mindset, helping with setting and achieving realistic goals, helping you with obstacles, helping you with any limiting beliefs, and helping you see insights that you may not necessarily see yourself, particularly when you are fatigued and your energy is low and you probably have brain frog… Sorry, I’ll do this again, [laughter] brain fog!

[We both laugh]

Liz: That was really funny actually, because I have some friends who call it the “frog” in their brain.

Jo: Okay. We can keep it.

Liz: And it makes you more relatable because you honestly sound so amazing and insightful people might be like, “Who is this perfect person?” So, yeah. this is so amazing.

Jo: It’s my life personally and professionally, I really feel this is what I’m supposed to be on this planet to do, I believe it that much. I honestly love it.

Liz: Yes. You know, we go through these difficult times and not, all of us are called to, give back, but I just think it’s so wonderful when people who go through challenges and then are able to turn it into their calling. And that’s really wonderful, Jo, that you’ve answered that calling and are now helping others.

Jo: All right, I’m just going to grab some more water, otherwise I might have another brain frog incident.

Liz: Oh, that’s great. Me, too. And I encourage the audience to take breaks, too.

[We took a 2 minute water break. Which was nicely timed, because then we went into talking about pacing. ]

Note: Nothing is medical advice nor meant to be prescriptive. We are just sharing our perspectives from our own journeys. Some people may find further testing and treatment is right for them. I do not have data on the effectiveness or side-effects of antibiotics taken long after an initial infection. Please consult trusted medical professionals. 

Liz: All right. So you mentioned pacing. Can you describe how pacing was part of your journey and what that actually looked like?

Jo: Okay. I learned about pacing, the hard way through living it in a tough experience. 

When you learn your lessons the hard way, my goodness, do you learn them. 

So I didn’t even know it was called pacing, what I was doing back in 2017.

And yet again, I was looking at little clusters of things I’d learned from nursing, which I had picked up from various patients with chronic illness. And I knew that when people were unwell and had only so much energy reserve, they had to be really careful with how they used it:

They needed to simplify their lives and prioritize what they were going to use that energy for.  

And what they couldn’t do was get up on a morning, use up all their energy, and then just rest for the afternoon.  

They would fall in a heap.  

– Jo, on her observations from nursing patients with chronic illness

They had to allocate little units of energy, for various tasks, throughout the day. 

And when I say energy, it’s not just physical exertion, it’s mental and emotional things as well. 

And sometimes the emotional stuff is more draining. 

So be super careful with that guys, factor it in. It probably took me about two years to feel normal 90% of the time. In that first year, there was quite a bit of improvement, but I was making that mistake of: I’d have a week or so of feeling much better. I didn’t quite understand I was dealing with a chronic disease at this point.

I would feel better, and I would think, “I’m cured. Oh, this is amazing. Back to my normal life.” And I went back to my normal mode to crash and burn.

And this probably resonates with a lot of people. So I’ve learned these things. 

Liz: Yes. Learning the hard way. 

Jo: I learned that actually once I had some stability, I could attempt a gradual incremental increase in activity and keep to that small increase and see how I was going. And basically this is what pacing is. 

In the early stages, I did it with a regime of charts on the wall of when I was going to eat, sleep, nap, do a little bit of exercise. 

And actually when I say exercise, I mean, I probably just walked the length of the garden, and I had a dinky garden at the time. 

And then there were the things I had to do for the children. And that’s how I went about it. Then, like I said, very small increases. If I was going to do something social, that was actually for me, quite draining.

I had to factor in some rest time before and after. 

So in that, hopefully there’s quite a bit of information for people who are not maybe able to get help at this point with pacing, but can just have a little look at their lifestyle patterns and what they’re doing, and maybe try and factor some pacing in. 

And I think sometimes what’s quite key is looking at your own patterns. See what you did, see what result you got. 

See what you did on Monday, see the result you got the next day and the day after.

Liz: Yes. And when we suddenly have more energy don’t cash in all your chips. Yeah. 

And I like what you said about factoring emotional energy, because that is so true. and also mental energy, because I so often see that having a huge impact on our health and fatigue.

Liz: All right. So can you tell me about what your upward trajectory looked like and how you dealt with setbacks along the way?

I know it was like this [does an upward angle with my arm] and then the pandemic hit, and then you started to get the burnout. But how did you deal with setbacks? And was there anything that you did differently when you had the dip during the pandemic burnout?

Jo: So pre pandemic when I was just the POTS person basically, and I was having setbacks because I was crashing and burning when I thought I was better and trying to go back to my full normal, self. 

But I learned, after a while, that it was a waste of time and energy — it was unnecessary negative energy — to keep thinking about that failure. 

So reframed it. I reframed it, that my body was telling me, sorry – my body was giving me a learning opportunity – to learn that was too much. And I had to take it back a notch or two. 

I just really started to feel with my limited energy, I didn’t have capacity for loads of negative emotions and dwelling on too much after the fact, “I didn’t get this right. Or I should have done that.”

So I took it as a learning opportunity, to help keep progressing myself forward. 

That doesn’t mean I didn’t get times when I felt utterly fed up. I’m a human, it can be really, really hard.

But yes, so that’s what I did. 

Liz: That’s so powerful seeing it as an opportunity and compassion. A lot of times when people hear about the mindset, people think it’s just, “Oh, someone telling them to think positive,” but how you can use mindset to have a sense of value in yourself and have a sense of compassion.

So we don’t feel like failures. Because if you feel like a failure, and your mind is telling you, you’re a failure, you keep pushing and pushing to try to make up for that. And you just get further and further in the hole. So being able to have self-compasion saying, “You know what, I didn’t do things perfectly, but I’m proud of myself, and I’m right where I need to be,” is just so powerful.

And it’s part of the healing.

Jo: Absolutely. And something that I advise people to do sometimes, or suggest they might like to try. And it’s certainly what I did with myself along with mindset reframing is:

We’re often our own worst enemy. We often have negative self-talk in our head. We are often so critical with ourselves, especially at a time when we need kindness. So if that’s going on in your head, take yourself out of your body.

Imagine that it is your best friend going through it, or your sister, somebody you love. What would you tell them?

You would not be telling them that negative self talk.

Listen to the message you would tell that other person.

I used to sometimes think about it/ I would take myself out of my body, dissociate myself from the experience and think if that was a patient in front of me, what would I tell them? And it was a very, very different message.

Liz: Wow. So powerful. And I remember at one point in my journey, I wrote a note to myself, like my own best friend.

And it was so powerful for me. And if I would’ve been doing that since the beginning. Yeah. It would’ve really, been helpful. So, yeah. Thanks for sharing that.

Liz: And you’re now helping others. you’ve answered the call, and found your purpose, which is so inspiring.

So What got you into, considering, oh, I can help others as a fatigue coach?

Jo: So, yeah. It was always been in my nature to help others. I signed up to do my nurse training at age 18. I’ve always been on that path, but having the experience of chronic illness myself and knowing we need a holistic, whole body approach, led me to becoming a fatigue and wellbeing coach.

We do need that medical management as well. 

So I’m not saying I stand outside of the medical management. I am here to coexist with it. 

So often they’re [the medical management] are dealing with the physical symptoms that you definitely do have with chronic fatigue. They are real, and they are not in your head, but sometimes we need to go upstream, and look at the mind and what is going on there and do some work here.

And I know that from going through this experience myself, but also I knew it when I was a nurse, I would look at people and think the medical management is only part of the equation. The mind needs work, too. 

The person needs to be as seen as a whole, and the person needs to be seen as a whole in their social situation.

We do not exist like little cells, all doing exactly the same things. We are unique complex individuals that need to be understood as a whole in our environments. And this is where coaching really comes in. 

And, when I hit burnout in the pandemic, it gave me a beautiful push to be brave, to hand in my notice and to start coaching career. So I often think a lot of things that have happened to me have happened for a reason. Now I don’t want the audience to think how dare she say this, “I was never meant to have ME or chronic fatigue syndrome.” 

Absolutely, you weren’t. But for me, there has been positive aspects of it. It’s led me to this point in coaching, and this is where I’m supposed to be. 

All my nursing knowledge and background to this point, helped me when I had my problems, and is helping me as a coach to help others.

I still do nurse. I do nurse one day a week. I’m a clinical nurse specialist. And, I’m just so fortunate that I can bring both these worlds together a little bit more. 

That doesn’t mean there isn’t room for other professionals, other healers, other functional medicine people to come into the equation.

But I just hope as a person, as a coach, to help. 

I’m just balancing it up a little bit more.

You can reach Jo through her website here.

Liz: Wow. So Jo, what is your final message to people listening?

Jo: So slow down, breathe, be kind to yourself.

Pace yourself, clean up your diet, consider some supplementation, and work on your mindset. Think about getting some help. Think about a coach maybe who can help you with your mindset, with setting realistic achievable goals, helping you with your limiting beliefs, and helping you with obstacles and if need be, help you with some reframing.

I just wish everybody out there well and good luck with everything.

Liz: Yes. Thank you so much Jo. This was just such an informative and empowering story. And thank you for sharing your story with us today. I am so honored to get your message out there.

Jo: No problem. And thank you for your time, Liz, and thank you for everything you do, providing hope and inspiration for those out there with ME and chronic fatigue.

Liz: Thank you. Have a lovely evening and just thank you so much. This was brilliant. .

Jo: Oh, wonderful. Thank you. Take care, Liz. 

Liz: You’re welcome. Bye-bye.

My reflections:

When Jo told me about her amazing experience with the standard medical system, I was so happy for her. And quite a bit sad at the same time, since it wasn’t the case for most of us. 

Like it really didn’t have to have been this way!

I think it’s important for the standard medical world to understand the symptoms, basic tests, diagnoses, and root/drivers/causes for these conditions.

Note: I love how Jo said you don’t need a fancy tilt table test to diagnose POTS.

Many of us spent hundreds – if not thousands – of hours lost on Google wondering why our bodies were falling apart, going doctor to doctor with energy we don’t have, and those of us with any money spent all of it at out-of-pocket speciality clinics and alternative routes. 

It’s funny, when I finally got a diagnosis (in my case CFS) by an out-of-pocket specialty clinic, how I felt so much relief. Because it confirmed what I already suspected. And it allowed me to really put my focus on healing. No more turning over stones looking back, just stepping stones going forward.

Of course, while there are professionals who aren’t aware of the right criteria to diagnose people with CFS, dysautonomia, POTS, and related conditions, there are others who give you a diagnosis and tell you there is little or no hope for improvement.

That’s another reason why I’m here. Raising awareness and also giving people options to consider to improve their health.

I agree that Western medicine can coexist with a whole-body approach.

We can factor in our lifestyle, diet, mindset, emotional well-being, and social environment to support our recovery.

There is a lot of hope here, and by combining our wisdom we can increase our recovery numbers and live better lives. We’re out of this together.