I’m excited to have Julie Holliday of ‘The ME/CFS Holistic Coach’ with us on the first episode of ‘Sick Lessons’! Find out why she chooses acceptance and to have faith that things will improve, despite living in constant fatigue and pain.
She has a wonderful calmness to her manner and tone, and espouses acceptance for the greater good of your well-being; a concept that I’m totally down with.
Listen as she shares some sick life lessons from living with ME/CFS on episode 1 of the podcast. You can also find the transcript below. Happy listening/reading, and see you in the next episode!
*Disclaimer: This article and the podcast are meant for educational purposes and are based on personal experiences. They are not to be substituted for medical advice. Please consult your own doctor before changing or adding any new treatment protocols.
Follow and listen to ‘Sick Lessons’ on your favourite audio platform(s) here: https://sicklessons.buzzsprout.com/
Transcript of Episode 1: Sick Lessons from Julie Holliday on Acceptance & Choosing to Have Faith Despite Chronic Fatigue & Pain
Sheryl: Hi Julie, how are you today?
Julie: Okay, thank you, how are you?
Sheryl: It’s good to see you. I’m so new at this, but thank you for agreeing to be the first interviewee on the podcast. Yeah, so let’s start with a brief introduction of Julie.
Julie: Okay, not much interesting, really, but I’ll try. I’m Julie. I’m a holistic life coach, and I work with people with energy limiting chronic illnesses. I live in Shrewsbury in the UK.
I live with my elderly parents, and we’re kind of mutual carers for each other in a way. They look after me in some ways, because I can’t do very much physical stuff. But I look after them in other ways, because I’m a bit more tuned in, and can do some of the more mental stuff around the house. So yeah, that’s my living situation.
I’ve been working as a life coach, self-employed for 7 years now. I’m also registered for limited capability benefits because I can only work a few hours a week because of the chronic illness.
Yeah, what else would you like to know?
Sheryl: Do you struggle with that? Or is it sustainable that way?
Julie: Before my latest setbacks, I was actually not on limited capability benefits. I was supporting myself part-time, and living a very gentle quiet life, but there was always that little bit of pressure, and that little bit of pressure to make enough money to be able to support myself.
That actually meant that I would push a bit, and I’ll talk about that later, but pushing is the absolute worst thing you can do with ME/CFS.
Sheryl: Yeah, with many chronic illnesses as well.
Julie: I was in Spain then, and I came back to the UK to live with my parents, and in some ways that has taken the pressure off, and has made it a lot easier for me to live in the way that’s most beneficial for my well-being.
Sheryl: If I can ask, what did you use to work as?
Julie: Yeah, sure. There’s lots and lots of different things in my career. Before the illness started the first time, I was a residential social worker, and I worked with kids with emotional and behavioural difficulties in children’s homes. Otherwise known in the U.S. as group homes, I think. Yeah, it was a challenging but very rewarding job.
I’ve had ME/CFS twice. I had a 7 year period in between where I was completely better, but as I was starting to get better the first time, I then worked in a women’s refuge – people escaping domestic violence – and I was the children’s worker. So my role was to make sure that the children’s needs were put first.
Sheryl: Sounds like a very heavy job for responsibility.
Julie: Yeah, but for me it’s always been about caring and helping people be as happy and healthy as they can be, really.
Sheryl: From children to people in prison, that’s pretty diverse.
When did it all start for you in terms of your chronic illness, and how did the first major episode affect you?
Julie: So, the first time, I think I was 28, 29, I can’t remember exactly when it was, but it was when I was working in the children’s home. The first time may have been the year before, because I got a post-viral fatigue that lasted a month. Though I did get better from that, after that.
So I had a month where I just was so exhausted, and it didn’t make any sense to what I was like before.
And then a year later, I thought I was coming down with a virus, so I rested all weekend. I didn’t do anything. I didn’t really come down with anything. I just felt that it was there, and then I went back to work.
Sheryl: So it didn’t feel like a flu or something?
Julie: It felt like it was coming on, but it never came out. It never turned into anything. But when I went back to work, I was just like, not… I just couldn’t cope. I didn’t have the energy. I couldn’t concentrate. I just couldn’t deal with it.
But I pushed on until I really couldn’t deal with it. And then at that point, I was like, more or less bed-bound. Somebody took me to the doctor’s, and the doctor turned around, told me to go away and drink a cup of water. That was my first experience.
I couldn’t do anything. My muscles were like rocks. They were completely overworked, even though I wasn’t doing anything. I was completely exhausted. I was completely spaced out with brain fog. I’d had no experience with anything like that in my life before, and so I didn’t know what was going on.
Sheryl: So it was like a slow build up for you?
Julie: I think that all happened within a week, really.
Sheryl: Oh right, okay, so that’s pretty fast.
Julie: So no, it wasn’t a slow build up. I went from struggling through those first few days of work, and really pushing to try and be there, because it was a demanding job, to just being completely wiped out and not being able to do anything. So no, it wasn’t particularly slow.
Sheryl: Compared to that, which was the worst episode of your entire life? And how does that contrast with your current everyday life?
Julie: I think that first, the beginning was the worst, because I pushed.
Sheryl: Okay, so the first was the worst?
Julie: The first was the worst, because I pushed. Because I didn’t know any better, I’d get a little bit better and then I’d push and wipe out again, and so the first was the worst.
Although the second worst was very recently, as after the coronavirus vaccines, the vaccines completely wiped me out. Fortunately, I’ve had lots of experience. Yeah, that was the second worst.
Sheryl: Even with all your experience, it didn’t help?
Julie: I knew what to do, so emotionally it wasn’t, well no, it still was bad emotionally, because my level of functionality went down so far.
So even though I could respond well, and be as relaxed as possible, and be trusting, and all of those sort of things, I’ll maybe talk a bit more about that later in a minute. Even though I was able to do all that, I still had to face the fact that all of a sudden I had practically no functionality.
The only things that I was doing at that time was preparing meals and doing the online grocery shopping, and I couldn’t do anything else.
Sheryl: That’s something.
Julie: Yeah, but I’d gone from being able to have some very carefully managed functionality to very little and yes, it was lost again. Every time your functionality takes a hit, you have to deal with that loss again.
Sheryl: It’s a constant grieving process. I would say that meal prepping is great if that’s all you can do, because you’re nourishing your body still.
And so, what are some of the biggest life lessons you’ve learned from being chronically ill? And how did you come to these realisations?
Julie: I think the biggest lessons I’ve touched on are around surrender, and just being completely accepting of what is in the moment. Being able to appreciate the little things, and being grateful for all that you can be grateful for.
And trusting. Surrender and acceptance aren’t very easy if you can’t trust or have faith that things will work out okay.
And it doesn’t really matter whether they work out okay or not. The faith and the trust makes it better in the now. And so, that’s what keeps you going in the now. That’s what makes it alright, I think.
Sheryl: Faith, trust… They’re a bit religious words, if you know what I mean. So could you expand on that? Like, what do you mean by that?
Julie: I’ve never been particularly religious. I would call myself a spiritual person, and I would never have used the word ‘faith’ before this experience. But faith is really, to me, it’s about something that you can’t prove is going to happen.
It’s choosing; It’s making a choice to feel okay about something. To believe things are going to be okay, even when there’s no evidence for it. And that’s why I call it faith.
Sheryl: And why do you think people should do that?
Julie: Because it serves you in the here and now. If you’re being trusting, if you have faith, whatever you have faith in, it doesn’t matter what the faith is in, but basically it means that you’re more relaxed in the moment, and we really only have the moment.
Sheryl: Would you consider that as lying to yourself?
Julie: Yeah, but anything could be lying to yourself.
Sheryl: Okay. That’s true. The truth is often subjective.
Julie: Yeah, the truth is very subjective, and we all have very different truths. What I’ve discovered is that you can believe anything you want to believe, and you will find evidence to back up that belief. So why not choose a belief that’s going to make your life better?
Sheryl: Yeah, that makes perfect sense. Something that serves you in the moment, something that serves your long-term goals, and serves to improve your health. That makes sense.
Do you have any other lessons?
Julie: I’m quite interested in law of attraction work as well. But that’s the same kind of thing. Do I really know that I will attract more of what I pay attention to? I don’t know whether that’s true or not.
But if I choose to believe it, if I have faith that I will attract more of what I pay attention to, then I’m going to pay attention to good stuff and my present moment is going to be better.
Sheryl: So do you believe in manifestation… affirmations, sorry.
Julie: Yeah, affirmations. Manifestations. I don’t know. Again, I choose to have faith in it. I choose to trust it. Whether it’s real or not, doesn’t really matter.
Sheryl: So it’s more of choosing a mindset, I guess.
Sheryl: Have you ever had episodes where your mental health was so bad, you can’t even cling onto that faith? And how did you deal with it, if you did?
Julie: There’s times not recently, whenever I crash I do have a joyless time, I’ll call it. So it’s almost like my brain chemistry isn’t set up to experience joy. But I’ve taught myself not to add any meaning to that.
That’s why I wouldn’t say chemically my mental health isn’t great, psychologically I’ve learned not to tell myself stories about it.
So when that happens, it happened quite constantly. For months, I was very low. Emotionally low.
Mood was low because of the… I believe it’s low dopamine as a result of inflammatory response.
But anyway, I won’t get into that.
So even though the mood was low, from telling myself any stories about it. So I would have stories like, “Oh no, this is the worst you’ve been for years”.
And I just tell myself, “Well, that doesn’t matter. This is just your brain trying to tell you these things, because your chemistry is all distorted.”
And when I’m in that space, I just tell myself, “All you’ve got to do right now is surrender, and wait for the worst pass.”
So during that time, I don’t push myself to be joyful. I don’t push myself to be grateful. I don’t push myself to make life better. I just allow it to be as it is, and without the resistance, and without the meaning that you can psychologically put on it. It’s not that bad!
Sheryl: What if it goes on for a very long time? Does it change things?
Julie: When it goes on for a long time, you have to fight the meaning a bit more, and you have to work with the trust and the faith a bit more. But actually, it did go on for a long time. Last year, it went on for about 7 months.
I mean, I have moments. I had brief moments of… It goes up and down, but it was seven months of difficult brain chemistry.
But actually, because physically I was so bad as well, there wasn’t anything else I could do about it.
And in some ways, it really taught me how important the lesson of surrender was.
Sheryl: Would you like to expand a little bit on your process?
Julie: Yeah, okay. So surrendering is… For me it’s about letting go of feeling that I’ve got to make the moment different. So when you’re suffering, you want things to be different because you don’t want to be suffering…
Sheryl: I guess even when we’re not suffering, we do that, too!
Julie: Yes, absolutely. But when we’re suffering, it’s kind of the natural response, isn’t it? The first thing you want to do when you’re suffering is do something to take away the suffering.
But that automatically brings resistance into your body, and tension into your body. And when your physical resources are limited, that’s just going to make you worse. So any tension and resistance that you’re experiencing is going to be draining your energy.
And at the time it was so obvious because I had so little energy that if I was resisting, I felt worse. If I was letting go, I didn’t feel as bad. I can’t say I’d feel much better, but I didn’t feel as bad.
It was a really good reinforcement to keep letting go, and being very present to the moment as well. One of the things that makes surrender difficult is if you think, “This is how it’s going to be for a long time.”
So if you tell yourself the story – and it might be true – “I’m this bad. It’s going to take me months to get over this”. You’re in the future and then you’re going to feel terrible.
However, if you just let go and be in the moment, then it might not feel very pleasant. It might be a bit uncomfortable. It might be a bit miserable. But the world isn’t going to end.
Sheryl: Maybe we can use that for a practical situation, so that people can understand more what you mean.
So for example, for those of you who don’t know, I recently had a spontaneous bilateral patellar tendon rupture. So both my knees are broken and disabled, and the doctor says it can take up to a year to recover. So that’s why I’m in bed right now. I thought I should start the podcast anyway.
And it gets frustrating, especially in the beginning. You know, I can’t walk. I went from running to not walking in a few seconds, right? So that’s really hard to accept, but I think I’m doing a bit better mentally, but I still can’t walk. How would you apply your concept to such a situation?
Julie: I would make a bit of meaning, and the meaning that I would tell myself is, “If I can be as peaceful and relaxed as possible, I am going to speed up my healing.”
I think the meaning that I tell myself all the time is that being in a relaxed state is the state in which your body has the best possible chance of all types of healing. Whether that’s a physical injury healing, or whether it’s this kind of illness healing.
That’s the meaning that underlies everything for me. Is that when you’re relaxed, when you’re peaceful, you optimise conditions for healing, and that’s what I put my faith in. That’s how I would surrender and accept.
Sheryl: And in your blog post, I think I’ve read something where you mention relaxed being different from say, watching TV or reading a book. You know, people tend to equate that to relaxation, too, but it’s different, right? Would you like to speak more about that?
Julie: Yeah, I think that it also depends on your level of physical functionality. So I guess if you’re physically healthy, then reading a book might be relaxing, because you have the energy to expend freely on that, and it’s a way of switching off and changing your reality.
But it would only be relaxing, I think, if it’s a peaceful book. If you’re reading a thriller, it wouldn’t be relaxing.
However, if your energy is limited, what you really need to do is to be able to enter into a space of peace, and I think that’s the word that I would use. For healing, you want to be relaxed to the point of peace.
Now, different things bring that for people. I don’t think television will bring it for many people. Depends what you’re reading, but reading, I think you’d have to be incredibly healthy to find reading peaceful.
Sometimes things like listening to music could enter you into a space of peace, especially if you can be really present in the moment. So listening to music could be it.
For me, it’s generally meditations, guided meditations. Although, sometimes painting can do it for me, if I do it after I’ve meditated. I have an afternoon rest for a couple of hours every afternoon, and then I tend to do a little bit of painting afterwards. Because, then I have a little bit of energy, and the painting is still a very focussed, peaceful activity.
If I do it for more than about 20 minutes, it’s no longer peaceful. And so it then defeats the objective, because then I’m starting to have to concentrate. So it’s all about what brings you peace.
Sheryl: So it’s a constant mindfulness. And is that peace possible when you’re in a lot of pain? How do you find this peace when you’re in too much pain?
Julie: Right. That can be more challenging. That can be a lot more challenging. And I’m very fortunate in that, for me, as long as I’m careful with what I do, pain is quite rare; not unheard of, I get headaches because of allergies, and they can be really intense. And when they’re at their worst, it is more difficult for me to be peaceful.
And I think there’s a step in between, and the step in between is to be able to let go of the resistance. So, a lot with pain, there’s often the initial pain and then the secondary pain caused by resistance.
Now. When we can build our skills to be able to let go of the secondary pain, the initial pain can sometimes, not always, but sometimes be something that you can just become familiar with and let it be there with you.
If you can get to the state where you can be familiar with it, know it’s there, but just let it be there with you, it can then be possible to get to the state of peace. But I’ll have to say that when I’m in my most intense pain, it can be more difficult to do that.
When my pain is moderate, then I can put all the skills into practice, and I can get to that place where I can just let it be there without resisting it, and maybe find some peace.
Sheryl: So it’s about making some space for pain.
Julie: Letting it be there. If you can.
Sheryl: I mean it’s not going to go away, anyway. No point wasting energy fighting it in the same space.
So, the next question I have is: How has chronic pain shaped your personality and outlook on life? Do you think your identity has changed because of it? And which parts of your personality have not changed?
Julie: Right. So, I think a lot of my personality is changed. For me, because my energy has been very limited, I have found purpose in trying to be the most loving person that I can be.
And I think personality is very much tied in with ego, with your identity, as a self identity. And I kind of left a lot of my self-identity behind, because I simply can’t be the person that I used to be. It’s just impossible. So to be happy as I am, I’ve had to let go of it all, really.
However, there are some things that are probably quite similar. One of the things I think is and that was a challenge when I first got ill, because I was determined to get better, and I would fight it, and fighting it just made it worse.
Sheryl: I did the same.
Julie: Yeah, so, I had to change my determination to, determined to be the best I could at managing the illness. So I had to change it into something different. I had to redirect it.
Sheryl: So you changed your role, in a sense. Same skillset, different role.
Julie: Yeah. It’s a funny thing. If you ask me about my personality and my identity, I find that really hard to actually answer.
Apart from my work. I have an identity in my work. I guess my identity elsewhere is maybe just about my values. About wanting to put more love in the world.
About… I love organic gardening. And when I have energy, I like to grow vegetables. I want to save the planet, I want….
Sheryl: That’s great!
Julie: Yeah, so I guess my identity is there, and that hasn’t changed too much. Because, I mean, when I was a student, I used to go on demonstrations with Friends of the Earth, and I’ve been a member of Greenpeace for…
I got a phone call from Greenpeace saying, “We just want to say thank you. You’ve been a member for 30 years. Did you realise?”
And I was like… “No!”
Sheryl: Drats, I’m getting old!
Julie: So uhm, yeah, I think a lot of my identity is in my work because I don’t get to do much else. My gardening. I do a little bit because I can do it in small amounts. I’m really physically not well enough to be out and about. I am more or less housebound.
I can only walk… I’ve started to be able to walk about 400 metres. So I can just about go around the block now. Two or three days a week, if I don’t have a shower.
Sheryl: So you showered today. That’s a lot of energy
Julie: Yeah, so I won’t be doing much later on today. This is my big energy chunk, apart from showering.
Sheryl: Thank you.
Julie: Yeah, so, satisfaction from working online is so much easier to get with little energy, than going out and socialising.
I have a couple of lovely friends who come and visit me, but they don’t live in the same town, so that’s not very often.
And also I’m shielding now, because of the vaccines having such a bad effect. I didn’t have the booster, so any immunity will have gone by now. So basically, I don’t have the physical resilience.
If I was to catch COVID, even the more common one that doesn’t seem to be affecting people as much, it would probably take me back to being able to do a lot less than I can do now.
And I can’t do very much now. I’m still at a very low level of functioning, but I just can’t risk that. I can’t even risk getting a normal flu, I don’t think, because of what it could do to me.
Sheryl: Gardening can be tough too! It sounds like you’re one of those rare people that found a job they loved early on in life, and maybe your personality has always been strong in that regard. So maybe it’s something you struggle with less, I think.
Currently what you do now for work, sounds quite similar to what you used to do, but in a different way, a different role again. So you found your niche, in a way. That’s something admirable, I think.
So let’s ask you a more fun question. If you were healthy, how would you live your life?
Julie: I’m quite an active, adventurous person. Hey, that was, that’s my identity! I used to be an active, adventurous person. I used to travel a lot.
I would travel a lot. I would be hiking a lot regularly. I would be mountain biking. I would be swimming regularly. I would be going out and dancing.
I loved to dance. I used to dance… literally danced all night. I would go out and if there was a dance party going on… In Spain, they would go on from about 11 to about 6 in the morning. I would be on the dance floor for most of that time. So I mean, I am a lot older now, so maybe not quite 7 hours. But I would still be… I would still be going out, and I would be dancing.
Yeah, travelling more. Although I think I would still have the same job. That would be the things that I would spend my free times doing. It would be.
Sheryl: I mean, that would mean you’d have extra energy and that’s how you’d choose to spend it.
Julie: Yeah. And I was just going to mention that in my period of health in between, I was a ski instructor and walking guide.
After I got better, I thought, I need to live my life for today for a while, and that’s what I did. So, yeah, I’d be doing…
Although I’d still do the same work, I’d go on skiing holidays, snowboarding holidays. I’d do stuff like that.
Sheryl: Do people get surprised when they find out?
Julie: I haven’t mentioned it very often!
Sheryl: So, what do you wish healthy people or society would do more of, or stop doing, now that you’re chronically ill?
Julie: There’s two sides of it, really. The one side of it is not being believed. So, I think what I would like people in society to do is to just be more open to listening and believing – with compassion. Having compassion for somebody else’s experience.
And even if they can’t understand it from their frame of reference… Which can be very difficult. But just to choose to compassionately understand instead of disbelieve and judge.
That’s one side of it. The other side of it, that bugs me a little bit. And this is more with people I don’t know very well, because I put everybody else straight. Is the people who say, “Oh isn’t it awful what you’re going through?”
And there’s a difference between compassion and being told your life sucks. Because yeah, it’s not very nice what I’m going through, but actually, I am really good at making the most of it.
For somebody else who hasn’t got all the skills that I’ve got at dealing with it, because they’ve never been exposed to it, it might seem that my life is awful. But instead of just assuming my life is awful, why not ask me how it is, and listen to what I say?
Sheryl: Yeah, exactly. So I hope this podcast does that. I mean, I think we’ve all learned a lot of lessons from being sick, and we have a lot to share with the world that even healthy people could benefit from, I think.
So we know that you have a blog. Where can we find you online? And do you have anything you’d like to share with people before we close?
Julie: Yes. I have a website and you can find it, it’s: themecfsholisticcoach.com and it’s all written together, and I write a blog on that website.
It’s also where you can find out about my coaching services. I mainly work with groups because my energy is limited. I don’t have time for many one-to-one clients. So I have a couple of group programmes that you can find out about, if you want to.
I’ve also just made a short video that you can sign up to receive which is called, “Thriving Without Striving. The Easier Way to a More Satisfying Life With Little Energy”.
A lot of people say, “I’m striving to be better”, or they call themselves chronic illness warrior, and it’s about fighting.
And I do understand those terms and using those terms. However, for me, it’s all about the opposite. We really have to let it be easy. And in that video, I’ll show you how to let things be easy. So you can sign up for that.
Sheryl: Okay, thank you so much, Julie. For those of you who are not familiar with Julie, I read her blog posts constantly, and she has many articles on surrendering, acceptance and going with the flow. So if you’re interested, you can check her blog out, and maybe even sign up for her coaching package. I will include these links plus her social media in the post as well.
Thank you so much, Julie, for your time. I appreciate it!
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