Charlotte’s full recovery story from CFS & the true meaning of rest

Liz:  So we’re going to be doing things a little bit differently today. Charlotte offered to lead us in a relaxation meditation before we start the interview. Charlotte, take it away.

Charlotte: So whether you are laying down, whether you are seated, you might like to draw your eyes to a close.

And take your awareness to your jaws, your mouth, and see if you can just relax this area. Perhaps the lips are closed and there’s space between the upper. And lower row of teeth.

Draw your awareness to your shoulders and see if you can invite them to just drop down a little

And then draw your full awareness down to your feet.

So whichever part of your feet is in contact with the surface beneath you,

Steady your awareness there.

You may like to move the feet just a little to help draw your focus down.

Feel that connection down.

Allow the feet to return to being still,

and invite the feet to soften and relax.

Invite that softness and that relaxation up to the lower legs

into the knees,

and invite that softness into the upper legs.

And the hips,

allow the belly to be soft,

allow the ribs to be soft and relaxed.

And in doing so, maybe make a little bit more room for the diaphragm and the breath.

Allow the chest to be soft

when we find ourself back at the shoulders. Inviting them to relax down again,

I feel like relaxation coming down through the arms,

cascading down a lower arms

and into the hands,

allowing them to be soft.

Fill your throat, soften,

and we find ourself back at the jaw.

Really invite in relaxation here.

Moving up to the eyes,

fill those eyes heavy in the sockets,

and then fill the forehead. Broaden and smooth.

Broaden your awareness out now to the whole of the body.

Feel through the whole of your body

and begin

kindly opening the eyes little by little, letting the light back in.

Liz: Wow, that was so relaxing. Ah, I needed that. That felt so good. And just coming back into the body. I’m so glad we did that, Charlotte, and thank you again for suggesting that. That’s so kind of you.

Charlotte: My pleasure. It’s as much for me as it is for you and for everybody who’s watching.

Liz: So can we go back to the beginning and talk a little bit about how your health issues began?

Charlotte: Yeah. With the beauty of hindsight, I can see that the slide into CFS for me began in 2008. I was living with some serious achiever tendencies, perfectionist tendencies, and helper tendencies.

I was pregnant with our second child. We were involved in a huge complete house renovation, and I was pushing myself to the limits. I was in hospital a couple of times with kind of severe fatigue and dizziness.

And I then had my son who’s healthy at home as planned. But unfortunately, I then hemorrhaged and was rushed to hospital. I decided to discharge myself without having a blood transfusion because I just wanted to be at home and get on with things.

And I then collapsed again, and at that point I couldn’t get back. I was quite quickly diagnosed, probably incorrectly, with postnatal depression and put on antidepressants, and it took me about six months to steady myself and get back to being able to function, but I wasn’t at my best.

I was plagued by dizzy spells and viruses, poor quality sleep. And I ignored all of this. And I pushed on.

We moved house two more times. We began another renovation project. Had a beautiful daughter at four, a beautiful son who was two.

And then in the January of 2011, I got the flu and that was the final straw. I was completely out then.

Liz: Wow. So, what [were] your main symptoms then when your health fully crashed?

Charlotte: So, I was mostly bedbound. I struggled to sit up in bed. I couldn’t really tolerate sound or light. I had a lot of flu-like symptoms, headaches and dizziness.

I couldn’t manage my blood sugar, so I was having to eat every 90 minutes and throughout the night. Completely un-refreshing sleep, and I switched between completely exhausted crash state and completely wired.

And I didn’t understand at the time, but if I did anything, if I pushed myself to do anything, have a shower or go downstairs, then I would have post exertional malaise and have a crash.

Liz: Yeah, we know now it’s post exertional malaise, but at the time, what did you think was going on?

Charlotte: I really didn’t know.

I was so confused, and because of that, just was making everything worse by pushing and digging deep.

I can remember at one point Googling the flu and it said something like, “It takes three weeks to get better from the flu.” So at that three week mark, I took my daughter to school, which is about 150 meters from our house, and I was back in bed for another three weeks after that.

Liz: Wow. That really hits [close to] home with me because I had a similar experience where around three weeks I’m like, “I’m gonna walk…” it was a mile to work…and that was the end.

So, you barely could even look at light and you decided to walk that 150 meters. And that’s nothing, I mean, for any of us now, or for you before, but from where you were, your body could not handle that. And you were in a crash state for three weeks. 

Liz: So you probably weren’t even physically able to go to the doctor. But when you did manage to, what did your GP say?

Charlotte: She quite quickly, correctly identified it as a postviral fatigue. 

She pretty much said, “This is likely it. Now your quality of life is going to be limited.”

“You mustn’t rest too much because you’ll get deconditioned, but you mustn’t do too much because you’ll get worse. And I can offer you some antidepressants.”

Liz: [Chuckles and sighs.] That’s the standard of care! Ah. I also got the post-viral fatigue, but I was told, “Oh, you’ll be fine. Just eat a balanced diet.”

I do want to go back and talk about, you had mentioned your blood sugar and needing to eat every [90 minutes], including at night.

Did you get any advice around diet did you look online? How did you navigate that initially? For me, diet was one of the first things I tried looking into. especially since your blood sugar went haywire.

Charlotte: Absolutely. Well, after the not very helpful response I’d had from the NHS GP, we went and saw a private GP who was more helpful.

She did a number of tests and found some things that were slightly out of balance and some deficiencies, and she recommended cutting out certain foods, so cutting out things like gluten, caffeine, dairy, sugar. Which absolutely fine, I cut those things out.

So it was tricky to make those changes.

I had low energy. The children were young and picky at that stage where they just like yellow and orange food. But little by little, with a lot of hiccups and mistakes along the way, I found a way to eat healthily, but also enjoy those treats and cooking things that were sweet, but also contained lots of protein, lots of nuts or sweet potatoes.

Things that were slower releasing in energy. So I could enjoy those treats as well as keeping my blood sugar stable.

Liz: But you have a good mantra around food, right?

Charlotte: Yeah. Nothing tastes as good as being well feels.

But what I didn’t understand at the time was that when you are in that stress state, it also has a huge effect on your ability to balance blood sugar.

Liz: Yes. What was the day in the life look like around this point when you’re starting to get your diet together?

Charlotte: So we had some more structured help at home at that point, and after about a year of eating in a more structured way, taking some supplements, having some intravenous vitamin infusions, after about a year, I began to get to a point where I could make the children’s breakfast.

And then we had a rotor of amazing friends and family who would take them to school in nursery.

I would rest during the day, they’d be dropped home. And I was well enough by that point to watch CBEEBIES, which is a children’s channel in the UK together. And then my husband would tuck us all up into bed at 7 o’clock.

So it was an improvement compared to where we were, but it was not the quality of life that any of us wanted.

Liz: So where did you turn to next then?

Charlotte: So at that point, I worked with a fantastic psychologist at the Optimum Health Clinic, Jess Thompson. She’s head of psychology then, I believe, and she helped me to understand the condition and where I was sabotaging myself.

She helped me to navigate the trauma of being that unwell, that length of time without knowing how I was going to get out of it. 

I started practicing EFT, so emotional freedom technique where we tap.

I began seeing a cranial osteopath, who was the first person to say, as I lay there on her couch, “Oh yes, this part of you is blocked. Oh yes, your adrenals are struggling,” and suddenly there was validation. An external person could tell me what was happening.

So that was helpful. And all of this was… the sum of the parts were working well. I was able to be out in the world a little bit more, but I was so anxious. My whole system was on high alert all the time.

Liz: Yes. But I just caught what you said about validation because it was helpful for me to see someone who was validating this versus, “Oh, it’s just postviral fatigue, maybe you’ll get better,” but who is truly understanding this at a deeper level.

But also, I want to go back and explain, so when you were seeking out this psychologist at the Optimum Health Clinic… I assume there might be a couple people listening who are like, this is a physiological disease. This isn’t in our heads.

But you had said that the stress of this illness itself affected your mental state, so can you just clarify that a little bit for people watching?

Charlotte: Yeah. Absolutely. I had resisted the psychology route for I guess probably two, three years. By that point. I was doing the nutrition, I was doing all the practical physical things, and they were helping to a point, but I was still so anxious and I wasn’t quite sure what was causing what.

And the psychology work, it was about understanding my patterns, my behaviors, where I was self-sabotaging. So this idea of pushing, this idea of achieving, this idea of helping.

I was trying to get better the way I’d got ill – by pushing myself. 

And when I understood that and when again, somebody externally validated that the experience I was having was a trauma. Obviously trauma with a capital T… this is probably trauma with a small T. So there’s not been a big, no famine, no war, no big events.

But that constant low level stress of being ill, of not being able to be the mother I wanted to be, the wife I wanted to be of having seemingly no purpose at that point. To have somebody validate that was incredibly helpful.

Liz: That’s so beautifully stated.

Liz: So you had mentioned, you were still very anxious [and on high alert]. What was the next step from there after identifying your patterns and how you were sabotaging yourself?

Charlotte: Well, I had a DVD at home, a yoga DVD that was designed for people with fatigue and most of it, it was way beyond my capability.

But there were some other very gentle movements with the breath that I found quite soothing because that was helping me come from my head into my body.

I didn’t understand the science at that point. I just knew that when I took five or 10 minutes of gentle movement, I began to feel a bit calmer and that sense of calm lasted longer than just sitting with my breath or laying down, taking a meditation.

And as the energy started to grow, I found a great local yoga teacher who, despite the fact I lay on the floor for most of the class, welcomed me in.

And I began to understand how I could use some of these tools to settle the self. And how I could use these tools to reconnect with my body and just to soothe my nervous system.

Liz: Oh my gosh. We have so many similarities in our journey. I too found yoga, but the really, really gentle stuff. And I also was just lying on the floor, but in my case, the yoga teacher tried to, she was like, “Lift up your bum.” [describing the time I went to a local group class].

And I was like, “Okay, no, I’m just gonna lay here.”

Charlotte: Well done. Because I think for a lot of people, they hear yoga’s good and they go to the class, and I think if you haven’t experienced this condition firsthand, there is a misunderstanding and maybe the teacher pushes too hard or the student feels they need to move a little bit more.

And then there’s a crash afterwards and people say, “Well, yoga’s not for me. It’s not the right thing.” And I think if you have the right practices. 

And Arsana, the physical movement, is just one element of yoga. I think in the West we tend to see it as Yoga – yoga is this physical activity. And it’s so much more than that.

If you look at the Patanjali Yoga Sutras, [yoga] is an eight step process, and the physical movement is just one of those eight steps. So we have all these other tools that we can use to settle the self, to reconnect with the self.

Liz: Yes, I’d like to get into some of that, but I just wanna also acknowledge to people, if you’re doing any yoga class, whether it’s an online class, an in-person class, it’s okay to just lay, there.

And that means if the yoga lady comes over to you and tries to be encouraging it’s saying, “I’m good.” And that was for me, also a part of healing. Learning to be okay with something I would’ve been embarrassed by or try to push through before.

Charlotte: So a hundred percent, yeah, absolutely. 

I would often find myself in yoga classes with people who are 70 or 80 years olds, and they were doing more than I was, but I was okay with that.

Liz: Yeah, that’s something we, learned through the journey. I mean through the reminders, but also just the hard way as well.

Charlotte: Absolutely. I got it wrong a lot.

Liz: Yeah. So let’s go into the yoga that actually helped you for the level where you were. Can you go into more of that? That sounds really interesting.

Charlotte: Absolutely. So I had growing body of evidence that yoga was going to be helpful for me and it was going to be the more subtle side of things.

So I decided to take a year’s foundation in yoga, and the lady who was teaching it actually happened to be one of the students on the video I had started out with a few years before. So I just thought the universe was trying to tell me something.

And I spent a lot of that course laying on the floor, just listening.

But in that course, we looked at the more subtle side of things, the very gentle breath work, the mudra, where you’re just working with your hands, the philosophy, the history, the understanding where we’re trying to get to with our practice, which is this steady mind, this connection to ourself, and these tools then informed my personal practice, which helped with soothing the nervous system and helped with my recovery.

Liz: Wow. So now you’re learning more about yoga. You’re taking this class. So what was next in your yoga journey?

Charlotte: So I decided to train as a yoga teacher, and I took a three and a half year teacher training with the British Wheel of Yoga.

And this was really when I started to fully understand what yoga was. But it’s not this physical movement that if we look at the definitions, yoga in the ancient texts in Patanjali Yoga Sutras, yoga is about reaching the state of a calm, steady mind. How nice would that be? If we look at the Katha Upanishad, for example, we are told that yoga is when we study the senses, when we look at the Taittiriya Upanishad, we are told that the state of yoga is when we connect to the true self.

So the ways in which we do that, yes, very gentle movement is a part of it, but also through the practices of restorative yoga. And restorative yoga, if you’re not familiar with it, is when we use lots of props, pillows, cushions, bolsters to get really comfortable and put the body into positions where the nervous system is soothed.

We are really comfortable and we stay there for time to allow deep breath. We can take practices such as Yoga Nidra, calming, breath work. If sitting with the breath is appropriate, and it’s not always, sometimes it’s triggering, at least to start with on your yoga journey, and ultimately moving towards this state of meditation.

So those were the tools that I found really helpful were the tools I still practice, the tools I share. 

Liz: Yeah. So how did these help you? In what ways did this help you in your healing journey?

Charlotte: So first of all, it helped me to take deep rest. Because up until that point, rest was laying in bed, feeling anxious, maybe scrolling on my screen, watching television, none of which really are true rest.

The practices helped to soothe my nervous system, and they helped connect my mind and my body.

I think there is such a disconnect when you have a chronic condition. Your mind stops trusting your body. Your body stops trusting your mind, and you need to reconnect them in order to fully heal.

So these gentle practices helped me to do that, and also they helped me to be out in the world in a safe and comfortable way. So I was able to go to a yoga class for an hour, but I certainly couldn’t have sat in a coffee shop for an hour at that point. So it was about this reintegration as well.

Liz: Hmm. So would you say you had any epiphanies or key learnings from this journey?

Charlotte: Yes, definitely. Um, so many. I think the key things for me are learning how to rest. I was never taught how to rest. It’s not something that we value in Western culture, and you need to release that exhaustion before you can move through.

I think learning to sooth the nervous system, really important, and learning to reconnect the mind and the body.

Liz: Yes. While you were doing this yoga training and reconnecting your mind and your body and healing your nervous system, did you then see improvement in your blood sugar? 

Did you have to continue eating every 90 minutes or did that begin to stabilize as well?

Charlotte: Yes, it did. And I still ate a sensible diet without sugar and caffeine.

Plenty of protein at each meal, lots of vegetables. But learning to settle and soothe the nervous system really had a huge effect on being able to balance the blood sugar.

Liz: Yes. And I do want to acknowledge that I appreciate your balance view because you were eating healthy, you weren’t eating caffeine or sugar, and I found that, too.

I went a little bit too far with the perfect diet, but I did find making those changes supportive of my nervous system.

So, did you have any other philosophies on eating?

Charlotte: So initially I focused on what I should cut out, and in cutting those things out, I found I was having quite a lot of the “free-from” foods, which when you look at the label, they might be free from gluten and dairy, but therefore have a lot of other nasty things.

So I slightly shifted away from what I wasn’t eating to what I was eating.

So the whole foods, trying to get to that 30 or 40 different plant-based foods a week and really enjoying that.

Liz: Oh, I love that. Yes, it’s a slight, but a noticeable shift, what can I eat? And yeah, I got a little too far with what I can’t eat. But just having fun with what you can eat and that’s something looking back, I wish I could have told my younger self.

Have a little bit more fun with the diet and focus on what you can eat because just the stress of having to be perfect and the feelings of restriction can just add more stress to the body.

Charlotte: Really, really true. Yeah. So true. Yes. Like you, I got to a point where my diet was so strict and so clean and so limiting.

It made going out difficult. It made being at other people’s houses difficult and then you realize you can relax a little bit. It’s a kind of 80 / 20 rule.

Liz: Yeah. Going over to people’s houses, like the times I was able and I would be like, “You need to buy grass fed organic.” And then they would be like, “Well this was on sale.” I was like, “Come on!” But yeah, my stress about it was probably worse than the chicken not being organic.

Charlotte: And I think that’s it. I misunderstood that at the time. So I would go somewhere and eat something that wasn’t on my “okay” list, and then I would have a crash afterwards or a setback.

And with hindsight, that was due to the stress of being in that situation and worrying about that eating, I think far more than the actual food itself.

Liz: Yes. Hindsight is 20/20.

Charlotte: Yes. When I sat down and thought about answering this question, it’s kind of tricky cuz there was no magic moment where I went for a five kilometer run and felt better. Bbut I would say there were two years I slid in to being ill. There were two years where I was very ill and mostly at home or in bed.

Then there were a couple of years where I was reintegrating with the world, learning how to be recovered out in the world, and then a kind of a buffer couple of years, I guess, where I was well, I was considering myself recovered, but sometimes something might happen, and I might have a crash or a setback.

But it was infrequent and usually I was able to steady myself with ease. So I guess around about six-ish years.

Liz: So you didn’t have a magic 5 kilometer run, but did you have any moments where you were like, “Oh wow.”

Charlotte: I think probably in, I think it was Christmas 2018. We had got back into traveling as a family, and we’d booked a Christmas in Finland, and we were on top of this small mountain. The mountains in Finland are small, and we were watching… and at that time of the year, there’s a point in the day where you can see the sun and the moon simultaneously.

And it wasn’t a moment where I thought, “Oh, I’m better.”

But I think looking back now, there was no concerns about booking that holiday. There was no “what if,” no worry, no backup plan. We’d done a bit of travel, and we just booked it and we went, and we enjoyed all of this outdoor stuff.

So yeah, perhaps that’s the mountain moment. If there needed to be one.

Liz: Wow.

Liz: And I wanted to ask you another question. So as a mother, all the learnings on the nervous system and the yoga, I’m sure it has helped you become an even better mother and has impacted your kids in such a positive way.

Charlotte: One of my biggest concerns when I was ill was that I wasn’t being the mother I wanted to be.

I didn’t, at some point even feel like I was being a mother, and that caused me huge distress and upset at the time, but there are good things to come out of this journey, out of this healing. And my children, I think, have benefited in other ways. We really, as a family, prioritize rest and listening to the body.

They practice yoga, at times. They’re both teenagers now, so they’re inching away from it a little, but I’m hopeful they’ll circle back around and come back to it. Although they still love restorative yoga because being a teenager is stressful. I think we have a calmer house as a result of this journey. So there are, there are benefits.

Liz: Yeah. And I know parents going through this, it can probably feel like you’re failing them or you’re failing your family. But if you hadn’t learned that lesson, not to keep pushing, keep pushing, keep pushing, you wouldn’t be where you are now.

Charlotte: I suspect I would’ve been a mother pushing my children to do things, to achieve things, and my son had Covid last year, as many people did.

He was really poorly with Covid, really unwell. I would say it probably took him about nine weeks to recover and then probably about another three to six months to get fully better. And I was able to use everything I had learned on that journey to help him and to push back with school and say he needs a phased return, not full-time yet.

And I think that was really helpful.

Liz: That’s amazing that you were able to support him in that way and the phased return. Because I, that was not my experience as a child, I actually was not allowed to miss a single day of school.

And I wondered, yeah. So that was informing my life. But that you were able to be there for your son and support him on healing because the body can fully heal from even these big events like Covid if we allow it to rest in the right way and help the nervous system return the body to homeostasis.

Liz: If you had to look back and say maybe the three things that had the biggest impact on your recovery, what would those things be?

Charlotte: The nutrition was really important. The building blocks of the energy took a little while to find the right nutrition, but that really helped.

Therapy so I could understand where I was going wrong, how I was self-sabotaging myself. And with that came community as well. Meeting people in a similar situation, which was so helpful, and meeting people who had recovered, which gave me hope.

And then the third thing for me, all of my yoga practices. So I could soothe the nervous system, so I could rest and reconnect with my body.

So I’d say they were the top three.

Liz: Yes. So you’re now helping others. Can you talk a little bit about how you’re now helping others with what you learned on this journey?

Charlotte: Yes. I am honored to be able to share these yoga practices via Zoom with other people in a similar situation. We have a wonderful community, really honored to be part of that, and I offer restorative yoga courses and weekly classes where we learn to allow the bodies to take rest very gently.

Yoga, which is mostly from laying down. It’s these subtle practices. And then gently yoga, which includes some movement and there’s a place for that.

There’s a certain place in our recovery when we need to take a little bit more movement, and in those classes we maybe focus a little more on the breath. We’ve got some of the history and the philosophy.

Maybe take some standing movement. There’s the option to take that from a chair as well.

So there are these different types of yoga, depending where you are on the journey or depending how you are in that. So perhaps some week somebody may come to a restorative class and the following week they may come to a movement class because as we know, it’s not linear.

Liz: Yes, exactly. It is not linear. And I like how you have that nuanced perspective of when it might be time to incorporate some gentle movement and when the restorative poses are what you need at that time.

You’re able to help people having once been in their shoes.

Liz: So are there any other topics around health and energy that, you’ve been learning?

Charlotte: Yeah, absolutely. And I think one of the things about this journey is I’m always looking to optimize my health. Where can I get that 5% more vitality? Where can I feel better in my life?

And I noticed a reemergence of some symptoms in my kind of early-ish forties, slightly different, but there were similarities, and I quite quickly realized it was probably perimenopause. So I went to see a fantastic doctor and I now take HRT (hormone replacement therapy), and it’s been fantastic.

So I think it’s worth recognizing the overlap of the CFS and the perimenopause symptoms. So that was a good discovery for me.

The other thing which I discovered last year is that I have mild obstructive sleep apnea, which means I stopped breathing in my sleep. So I had an overnight sleep test, which was on the suggestion of an endocrinologist.

I was having a general checkup, and he said, “I think we’ll just get this checked out,” and he was right. I stopped breathing about 12 times an hour during my sleep, the longest of which was for 84 seconds, which had quite a long breath, but I couldn’t do that awake and with the NHS, that’s not considered worth treating.

I thought it was probably worth looking into. So I now have bought myself a CPAP machine, and I have a little thing which sits under my nose at night, keeps my airways open. It was really challenging, for the first six weeks it was challenging. And then I now feel I have a much deeper sleep, and I naturally need less sleep.

So, I think it’s interesting that that was probably a factor all along. Not the one thing because it’s rarely just one thing, but it was certainly a factor.

Liz: Yeah, that’s so interesting. A nice lady on Instagram just wrote that to me and the sleep study can be helpful if you suspect that could be a thing.

Cause sleep apnea can of course affect our body’s ability to recharge itself. So I’m glad you have even more energy now after looking into that.

Charlotte: Yeah, I mean, life is very different when I was ill because I enjoy a full life being the mum that I want to be traveling long walks teaching yoga, but it’s also different to how I was before I became ill.

I am connected to myself. I’m in tune with what I need, and I prioritize that.

Liz: Mm. So do you have confidence you are continue to be in good health and thriving?

Charlotte: Absolutely. And life can sometimes be complicated and challenging and messy, but that’s okay. I have no concerns that I’ll become ill again. I have this whole toolkit of things to help me navigate life.

Liz: Mm-hmm. Yeah. Alright. So what’s your final message for people watching today?

Charlotte: So I guess if I could go back and give myself some advice, uh, there’s probably five things that I would say to myself.

And the first one is it’s a complicated, multifaceted condition. There is no silver bullets. I was desperate for it to be an endocrinology problem or pots or just there to be one thing wrong with me multifaceted.

[The second is] seek out people who can help you. Seek out experts. Step away from those people who make you feel like it’s not a real condition. But be your own best guide. What can help at one point can hinder at another.

The third thing I would say is the slower you go, the quicker you get there. You can’t push your way back to health.

The fourth one would be learn to rest. Learn to release that exhaustion.

And the fifth thing would be find tools to settle your nervous system, whatever they may be for you.

Yeah, that would be my five things. I would like to go back and say to myself.

Liz: Such great wisdom. I’m like, oh, I wish I could have had this recovery story, listened to this recovery story, when I first experienced CFS.

Liz: And is there a good way that people watching today can contact you to learn more?

Charlotte: Yes, absolutely. I would love to get in touch. Um, my website is GentleYogaWithCharlotte.com or on Instagram, I’m @charlotte.wightman.yoga but the website’s probably the best way, and I love to have a 15 minute chat with people, see where they are, see how I can help and make a plan together.

Liz: Wonderful. Charlotte, I’m so grateful to share your wisdom and your inspiring story. I just thank you so much and that meditation in the beginning, oh my gosh, that was so soothing and relaxing.

So thank you.

Charlotte: Thank you so much for having me. I’ve really enjoyed it.

Liz: All right. 

[We kept the cameras rolling.] 

This was so good, Charlotte. I can just feel how regulated you are, but also just the journey that you went through as a young mother. I healed before kids.

Charlotte: See you. Bye.