ME/CFS Recovery Story: How Pacing and CBT Led to Lynne’s Success

Timestamps:

Transcript:

Introduction to Lynne's ME/CFS Journey

In this interview, Lynne, a very experienced nurse, shares her story of how she found her own path to recovery rather than using a program. With a history of depression, when she started to develop a range of additional symptoms, including food sensitivities, headaches, gut issues, nausea, dizzy spells, and of course the fatigue, she didn't know what could be wrong. Finally, over three years later, she receives a diagnosis, and she explains her challenges with that, given that she previously thought these were not real diagnoses.

Is it ME? Is it CFS? We discussed how forums run rampant with people wasting their precious energies on these things and perhaps Lynne's husband's view on this makes the most sense. She knew her illness wasn't depression. She knew something was seriously wrong in her body, which is why she resisted the diagnosis for so long.

So, given all that, why would she possibly engage with Cognitive Behaviour Therapy as part of her recovery plan when she knew it was a real physical illness? I felt our discussion on this was very insightful. Here's a small spoiler: it's called Cognitive Behaviour Therapy. Ask yourself, does what you do impact how you feel?

I imagine you haven't been running any marathons lately. So this, like so many, is a longer interview. I know many of you struggle with this, but remember, you can pause and restart at any time. So, it can simply be multiple short interviews. The reason for longer interviews is clear. Short interviews tell you what people did to recover.

This is irrelevant to you. The reason being, I can tell many stories of people who did the same things. As any recovery story you hear, and who did not recover, the keys to recovery are in the detail, the inner subtleties, the nuances. That's the inconvenient truth. It's about learning how people do it, how they find ways of overcoming obstacles.

There's also some great discussions about working during recovery, which I thought was really, really helpful. Again, it's not what you do, but rather how you do it, and I felt we made some great progress detailing how this works in this wonderful interview. Take your time with it, listen in one go, listen in parts, listen again, however it serves you best.

Here's Lynne’s: Wisdom from the Other Side of ME/CFS. Just a short but important message regarding the content of this podcast. The ideas, concepts, and opinions expressed in this recording, website and associated media and products are intended to be used for educational and information purposes only.
Nothing presented is intended to replace your physician, nor are they a substitute for medical diagnosis, advice, or treatment. This podcast is provided with the understanding that the authors, guests, speakers, and publishers are not rendering medical advice of any kind.

Okay. So I'm excited to bring a another recovery interview to you.

And today, I get to speak to Lynne in the UK.

Hi Lynne. Thanks for coming.

Lynne:
Hi!

Dan Neuffer:
Now…

Lynne:
Look, I'm happy to be here.

Dan Neuffer:
Yeah, and now I think we connected over Facebook. I think was that where we first met?

Lynne:
Yes.

Dan Neuffer:
Right?

Lynne:
Yes.

Dan Neuffer:
And you've seen some of the recovery interviews and decided to share, share your story. So, I guess the first question is, what were you actually diagnosed with?

Lynne:
I was actually diagnosed with CFS. Obviously, here with the UK, I mean, as you know, there's like this whole debate about the name of it and things. And I do tend to refer to it myself as we sort of seem to over here as a CFS/ME. So I, I do say I've had CFS/ME.

The Onset of ME/CFS Symptoms and Initial Misdiagnosis

Dan Neuffer:
Right. And how long ago did you first become ill?

Lynne:
So, I, my, my first, I believe, sort of, symptoms really were back in probably about 2012 time. When my health seemed to kind of start going very bizarre, I kept having lots of different symptoms occurring, which gradually seemed to ramp up sort of over time really, <Yes>, and things, which I've got a history of depression anyway. Back in 2012, I was, I was having a lot of stress going on with work and things as well.

And kind of spoke with my GP, and we just kind of put it a lot down to distress, and I was depressed and things as well. And sort of, you know, over certain of time with it, with all the symptoms, it was just literally, you know, stress from work, how sort of things going on. Within sort of my family, so a bit of ill health and things with my daughter and things as well.

Yeah, it was just all when it kicked off.

Dan Neuffer:
You know, what kind of symptoms are you getting?

Lynne:
So, so, I kind of got, things. I was getting lots of sore throats and kind of having almost continuous colds and things. I was getting a lot of muscle aching, headaches, and particularly for me, which kind of got kind of quite bad. I've always suffered with eczema, and kind of a cleared up, but my skin started to get worse, and I started to kind of erupt in rashes.

I've got my legs and my arms, hands, et cetera, and things. Very itchiness. I was also kind of started to notice I was, I was trying to get very difficult to remember things, you know, sort of starting to have referred to as the brain fog kind of type thing. I was getting a lot more anxiety and things as well.

Temperature control as well as something I had trouble with, and I started to have symptoms of having like hot flushes, you know, profuse sweating and things. And that was another thing we looked at with, with my doctor at the time, was, you know, was I going through early menopause or something as well?

It's because of having mood swings and things as well. So and obviously, then I was obviously feeling kind of very tired, just literally just doing what I needed to do in the day, and then I'd be flaked out on the sofa <Yeah. Yeah.> at the end of the day.

Dan Neuffer:
Good stuff is going on. I'm sure this comes on.

So, so I guess initially, I mean, did, did the doctor just, did you think, Oh, maybe it's, I'm feeling depressed, but then all these physical symptoms, I mean, did you connect that with depression, or did the doctor make that connection, or?

Lynne:
It's what's between us. I had a very, I mean, I'd say I've suffered with depression for a long time, and I've been on antidepressants since the early 2000s. Really in things as well anyway.

And had a bit back then, early in the 2000s, about 2004 time. I'd had some CBT and things for depression and kind of learn through used CBT at that time for helping me kind of to overcome the depression. Well, learn better sort of coping techniques and things as well. And, and yeah, and because I was going through things at work in 2012 particularly, to kind of changed quite dramatically.

We had a big sort of change of, sort of the dynamics within, you know, where, where I work, which I mean, I'm, I'm actually a nurse. I'm a nurse in a, in a doctor's surgery. And we had sort of quite a lot of big changes going on. So that was very stressful and lots of changes generally, you know, around that time.

So, with that, we did just really something, you know, it's probably depressed. We up the antidepressants and things, and gradually, over the next sort of, yeah, a couple of years or so as well, it was, it was just sort of that. But the symptoms just kind of almost getting worse and worse. You know, I started kind of obviously really have difficulty at work.

I was signed off periodically. Most of my sort of sick certificates, except, you know, do sort of put down your depression you know, due to stress et cetera, and things. So it wasn't really until I vaguely recall, I think around about 2015 times, 2014, 2015, it went through my head at one point. I was doing some reading about thinking it could, this could be ME.

I was sort of, but, and again, that there really is like one of the conundrums I've, that I've personally had as well, is it's something, as a healthcare practitioner myself, does it really exist? This is one of the big problems I had with the whole getting diagnosed and things with it as well. Because, you know, as far as I was aware, it was kind of, it doesn't, it's, you know, it's not something really that is a real thing, a proper diagnosis and things, kind of. So, I was kind of having a conflict within my own professional, <Yeah.> head and then muscle personal head.

What's going on? And I didn't really pursue that at all or anything. So, just kind of kept getting the GP. Yeah, it's depression. I'm burnt out. There's also a lot going on. You know, I've had, you know, situation going on with, with my, my daughter was kind of quite severely ill things as well. In 2013, 2014, she spent in hospital.
She was in hospital about six months, and things, and everything to and things really took a back backseat.

You know, it's just, okay, I'm having all these problems and things, but, you know, as a parent...

Dan Neuffer:
I mean, what kind of symptoms did you then have between 2012 and 2014?

Lynne:
Well, I mean, within that, I mean, I kind of, I've already mentioned some of them.

I mean, just looking at this, I've got some notes from previous and things that I've done. So other than, you know, the recurrent sore throats, et cetera, and the headaches, I did start to have—I was noticing I was actually having problems with like food sensitivities as well. Very bizarrely, I couldn't eat fruit.

That used to kind of make my skin really come out. I used to be really, really itchy and rashes and things as well. I was getting an awful lot more gastric disturbance, a lot of bloating, et cetera, and feeling very nauseous. I did, at one point, because I did actually have to go and have a colonoscopy, because I had bleeding at one point, and that was investigated.

It's like, you know, is it something to do with that, you know, whatever. That was all absolutely fine. I very much started to get dizzy spells a lot, and sort of kind of like very panicky as well. I was finding it really difficult holding things — my kind of fingers, hands almost would like going to spasm and things if I'm holding cups and, and things.

And just generally, just feeling that I just, I just knew things, you know, just things weren't, weren't right, weren't normal, but had so much else going on. It was, you know, I just dealt with it, just got on with it and things really, and thought, I'm just depressed. It's fine. We'll get over things.

Dan Neuffer:
Do you think, do you think, you know, which of those symptoms do you think really aligns with symptoms of depression?

Lynne:
I'm not seeing things like, well, sometimes sort of the lack of energy, but the difference within that. I mean, when I reached the point when I finally did get diagnosed, which was actually in 2016, I'd, I'd effectively, between 2012 to up to 2015, every year as well, I'd, I'd literally in the autumn, I'd kind of have.

And what was basically termed over those, those three years was I basically had sort of like a nervous breakdown. Thought due to the depression, stress at work and things, because I just was not able to work. And I eventually kind of linked this to having the flu vaccine annually, which I had.

And I mean, this is just sort of since I've recovered or during recovery that I've really kind of looked back at that and thought every single year. In the autumn, October, I'd have this, you know, breakdown. But 2015 when it happened, I actually had a real proper, I, I described it at the time. I just kind of felt that I hit a brick wall.

I could not do it. I was literally bedbound for two weeks. You know, just couldn't get out of bed, couldn't sing, couldn't do anything really. And that was really, really terrifying.

It was that point that when I kind of thought this is more than depression, this is not just, you know, the fatigue, et cetera, and things and anxiety related to depression and with everything else. This is something more definite than that.

Recognizing ME/CFS and Seeking a Diagnosis

Dan Neuffer:
So what would happen if you were to, let's say, you're getting the fatigue and things, and you would go and, let's say, do something like exercise or clean the house or do some jobs. How would you feel after that?

Lynne:
Absolutely exhausted. Usually as well, I mean, with the whole, you know, they call this the post-exertional malaise, used to actually hit me probably about 48 hours later as well. <Yes.>

So when I, and it was kind of gradual, I suppose, over that time, reading up, and then from that time that I really started to look at what I was doing and that these symptoms were reflected in things that I'd done. And I'd started reading a little bit more. I looked up again then, at the time, I sort of looked up about CFS/ME.

And I was reading through the symptom list, et cetera, and I was thinking, yep, got that, got that, got that, got that. I thought, okay, I think this is the time. I take this to my GP and say, look, actually, this has been going on. What do you think? And luckily, I mean, she, she said to me, actually, it was actually the year before, I think they'd started it.

We'd actually just had a new service locally where I am set up for CFS/ME diagnosis or patients and things as well. And she said, would you like me to refer you? Yes, please. So that's how I kind of got onto the thing, getting it properly diagnosed.

Dan Neuffer:
Did you think that CFS was, I mean, a real illness or did she think it's a bit?

Lynne:
Yeah, I think it was still, she's probably still felt it was, you know, a bit of a, is it real? Isn't it? I was still in that mindset to, to, you know, to quite a large degree myself with it as well, but then sort of reading around about it, you know, about the, what is CFS/ME, etc., and things as well, you know, and obviously there is obviously the big psychological element of it, and things, so that kind of thing.

You know, all made sense to me from the symptoms and things I was having. And that's kind of really what then led me when I was reading about it all, as to what's going on in the body, as it's like, you know, this, this over, overuse of your, your stress, you know, reaction to stress et cetera, and things.

So, I sort of looked at how energy production was probably like not the right thing to be doing at all because I really then, after diagnosis, threw myself into reading and learning about CFS/ME, etc., which in itself is probably quite exhausting. But coming from that sort of nursing background, that kind of wanting to know about health, how things work, I've sort of looked into it and, you know, obviously, got into sort of looking at the, you know, the, the nervous system, et cetera, and things, and realizing that symptoms are kind of like when you're out of kilter, you know, with, with things, which is then where I, where I discovered CFS Unravelled. And that was that was in that summer 2016, which that was one of my big moments, turning points.

I think that's when I was very first contacted you, I think, because it just clicked everything into place for me, that final piece in the jigsaw puzzle of, you know, that the autonomic nervous system, how that is what is the root cause, you know. It is at the bottom of the puzzle. All of this, just all different symptoms, you know, stem from different areas of the body, but there's got to be something that you can treat one and that gets better, and treat another and that gets better and do, you know, but if the baseline is out of kilter, then you're going to keep having these problems unless you address that.

Dan Neuffer:
That's right.

Lynne:
Yeah. Yeah, exactly. So...

Dan Neuffer:
You know, it's, it's interesting. You know, I'll come lots of doctors, doctors who refer to the program and the book doctors who have enrolled themselves. But there is still, of course, there's in a large part of the medical community, this whole thing that it's not a real illness or that it's psychological. It seems to come from this whole idea because, you know, there's no definitive test, or should I say, we don't really do the right tests. Let's put it that way. It's not like something's broken, you know, like if your kidney's not working, let's see that in a blood test or the liver's not working up. And it's not that something isn't working, it's just that it's not working correctly. And that makes it, I think, very confusing for doctors.

Lynne:
Yes.

Dan Neuffer:
But, and there is this overlap, isn't there, with depression? I mean, depression can cause fatigue too. But the difference with fatigue is, if I come in with a big stick and make you get out of the house, then you might be really annoyed with me, but at the end of whatever you've done, you're probably going to feel a lot more energy.

Lynne:
Mm, yes, that's right. Yes and...

Dan Neuffer:
With ME, it's quite the opposite, isn't it?

Lynne:
Yes.

Dan Neuffer:
You feel a lot less energy. Maybe not immediately, but certainly, like you say a day or two later...

Lynne:
A day or two.

Dan Neuffer:
It hits you, doesn't it?

Lynne:
Yes.

Dan Neuffer:
So yeah, I find something for people who are healthcare practitioners themselves, it's <affirming> , it's, you know, it doesn't make the journey any easier because, because you've got to reconcile all this in your own head as well. And so many of us become able to kind of fight the diagnosis because we think it's not a real illness, or can't do anything about it, or we think we have a virus or, you know, whatever. But of course, if we, if we don't think it's a real illness in the first place, then all the more reason to resist it, right?

Lynne:
Yes.

Dan Neuffer:
So that must have been very, very very difficult.

So then, was that, so what was your turning point? Was it following the book? Was that your turning point, do you think?

Lynne:
I mean, yes, certainly, I mean, probably just sort of prior to that. Actually, when I got the actual diagnosis, so I was referred.

So, I mean, this was November 2015, I was referred to the service. Didn't get an appointment with them until January. March, the following year, March 2016, I, there was quite a long wait waitlist and things, so, kind of got seen and pretty quickly sort of diagnosed. Be in that time, my doctor obviously did, they had a range of tests that you had to do to kind of, for them to see you, to rule everything out, because that's the other trouble, isn't it?

Like CFS/ME is a, you know, diagnosis of exclusion, you know, very much really. <Yeah.> So, I got to see them in March, and then was diagnosed the came up sort of with the, sort of my, my treatment plan was going to be, that was going to, you know, take part in the sort of CBT, and that was offered, and things as well. Which I, you know, was quite happy to do, because I felt that would be sort of really helpful. They had sort of a lot of good stuff around pacing, etc, and things which, which I kind of started to do at that point as well. I'm going to say, it was in that interim between being diagnosed and then getting the diagnosis, I've done a lot of reading about it. Then, when I actually got the diagnosis, I did feel quite a lot of relief. It was nice to actually finally have a label, which again, bizarrely, is something that's kind of, again, it's a difficult thing. There's a whole thing around labelling of illnesses, etc, but it was actually nice to be able to say, 'This is what it is.' it's actually quite this is what it is.

So, now I can actually definitely work on something because I can kind of try to find out about it. Which then, obviously, conversely, is the fact that probably part of that drove me, and the fact that how, you know, part of how I didn't really manage my, myself much in the past was I'd kind of then get into overanalyzing things and overlooking about things and really, really wanted to dig in to find out what was going on, which of course, when you haven't got the energy and things to do, you know, it's a bit counterproductive.

I was wasting a lot of because by that time I'd realized that, you know, any energy, whether it just be sort of, you know, if it's emotional, physical, whether it's, you know, intellectual, you know, it's wasted energy, almost.

Dan Neuffer:
You want it to turn into something practical, don't you?

Lynne:
Yes, yeah.

Dan Neuffer:
An action that you can take that's actually going to make, make a difference.

Lynne:
Yes.

The Role of Cognitive Behavioral Therapy (CBT) in Recovery

Dan Neuffer:
So, you said you start doing the CBT interfacing. So CBT, you know, I mean, what does that really mean? Cognitive Behavior Therapy, but what does that have to do with the illness? Because you've got a real physical illness. I mean, CBT for depression makes sense. <Yes.> So I guess the question is. What was the angle of the CBT?

Lynne:
Yes. I mean, and certainly for me, I mean, I did find it really helpful because doing a lot of reading, and obviously kind of, you know, they sort of say there's a lot about the psychological aspect of it. But I, I was very aware from when I'd had CBT previously, previously for depression.

But obviously that, you know, because it's cognitive, the way we do things and, you know, behavioral. how we sort of think about how we do things. It made sense that something I was doing was causing, you know, all the systems in the nervous system and things to, to not work properly.

So, you know, I very quickly realized at that point, you know, I needed to kind of change how I thought about things to be able to help myself improve, you know, and, and to, reduce and, you know, eventually get rid of those symptoms and things.

And my, my psychotherapist who, who I saw, she was lovely really, really lovely lady, which helps as well. I mean, I think this is the problem with, with anything to do with psychology. When you do have any sort of therapy like that, if you need to be with a therapist that you can relate to quite easily and things, well, otherwise therapy itself isn't easy.

But you know... Absolutely. Yeah. So so I, I was very lucky. I think from, from that perspective that sort of that my psychotherapist was very good. She actually had a background kind of in nursing as well, which helped, you know, obviously, you know, being in sort of healthcare and things as well, which, which helped.
So, she could understand when I was saying certain things, and she'd be able to kind of put back to me, you know, why, you know. The really, really, really, it's just... I really started to properly look at how I did things, how I basically being brought up, how I'd kind of gone through life. Effectively, I can look back to it now and think, you know, I, I didn't have very good coping mechanisms and actually the sort of whole stress factors had been ongoing through my life.

I'd had friends who'd often say this to me as well and things. Yeah, I was just one of those people that, you know, things happen. It's like, things happen. This is, this is life. This, this is, this happens. Let's just get on and things—not really probably dealing you know, with things. So, I mean, what I was kind of going through.

I suppose, throughout my life, I've not really dealt with or learned proper coping strategies and things, things with, etc. Within the CBT, being able to kind of, to reflect on what I'd been through, and the fact I just literally, almost, you know, some degree—life, it happens, that's what happens, not really dealt with those things.

I just kind of would get on, you know, with everything. Whereas, whereas, you know, and I'd know, and obviously, and the other thing that my therapist or said to me that came out in CBT—as a nurse, and equally, that's the other thing as well, within my job, I'm always all about caring for others, et cetera, and very much, you know, kind of supporting others, you know, sort of through things.
And eventually, I have looked at so well, I'm not doing for myself what I'm advocating my patients to do, or anybody else, friends, it was kind of, you know, what would you say to a friend in this situation? What would you be thinking?

And once I started to look at that, it kind of all became much more clear that, you know, yes, I don't have great coping mechanisms really at all. I'm not, not really dealing with all this stress and things. So it's no wonder that my body's kind of, you know, yelling at. That, that's basically what I felt at the end of the day, that all these symptoms that gradually got worse and worse. I mean, I think towards the end, I suppose the worst thing was the fact that my, my skin got worse. My skin on my face got really horrendously sore and red.

So I was kind of really, really quite nervous about working and just being out and things as well, because when you've then got that visible, thing, you know, that's kind of really hard. And I see it now, that basic, all these signs were just a buildup of my body saying, 'You're not dealing with things.' You know, come on, I mean, you know, we're not working anymore, stop. Just, just stop. And, and that's where I got to.

Dan Neuffer:
It's easy to neglect yourself, isn't it? To be looking after everyone's self and, and, and...

Lynne:
Yeah, absolutely.

Dan Neuffer:
Look, I mean, obviously, there are a lot of really difficult things to have dealt with, and, and you mentioned the history of depression. So, I can make sense that you would say, 'Okay, I gravitate towards, towards that.'

But I'm, you know, so I'm kind of curious what the approach is, and maybe to help the listeners understand with this CBT. What, what's, what about if somebody doesn't have any of these? What about if somebody doesn't have a lot of stress, psychological stress leading up to that? So then, what is the approach of the CBT for people with, with ME/CFS then?

Lynne:
I mean, well, very much.

I think, and I do think it's kind of been a problem in the past, really, of how we look at psychological health. We see it as separate to physical health, and it shouldn't be. The body is a whole. The brain is your controller of everything. And, you know, psychology, the psychology of how we work and things, well, is just as important as any physical aspect.

But for too long, we've, we've kind of really separated everything. So people still, there's still a big stigma against things being psychological. Yet, if we didn't have it, we wouldn't actually be able to do what we do because we need our brain. Nobody really knows how it works, you know, properly understands, et cetera, and things as well.

And, you know, it's just kind of all those processes that you go through. You can't, you know, all your life, you're kind of told things by parents, and gradually, you know, friends and things and colleagues, you know, people that you meet. And you have to make decisions based on, you know, what society is doing.

We've, you know, given lots of, pointers towards how we should be doing things, et cetera, and you sort of make your own mind up and things. And, and sometimes they're not always necessarily things that are right for us, for, you know, for you as a person, particularly. So I think that's where the importance of, of just, you know, of understanding how, how your thought processes actually affect you physically as well how you do things, which, which is why I think that even if you're not somebody who's had a lot of stress, for example, you, you still have some perceptions of what's, what health is, what, what should be healthy, what isn't, and everything's so different.

So many different diets and things out there, et cetera, and what you should be eating, and you should be doing this much exercise, should be doing that much, et cetera.

Dan Neuffer:
It's all very distorted in this world. It's such a wild spectrum of what people think is normal.

Lynne:
Yes, exactly. So, and, and that, I think itself actually is a, is a stressor.

Although you don't particularly think you're under stress, necessarily, I, I think society as well—we live in a much more stressful society now than we ever did. We don't do as much exercise, which is very good, obviously, for the body and the brain, mood, et cetera, and things as well. We use a lot of communications, like, you know, et cetera, which actually that's kind of quite a stressor on the brain and things as well often.

So I, I, I do think it's, it's that connect between—we, we don't accept that psychology is part of physical health just as much as that any other part of the body and things. So, so that's why I feel that CBT really is something that's really important for you sort of, to, to understand. Don't neglect, you know, the brain and how we act and things.

Dan Neuffer:
Your mental well being is central to everything. I mean, without that, what have you got? Even if you don't have physical well-being. I mean, I'm not saying what's the point, but that's kind of where you live your experience through, isn't it?

Lynne:
Yes, very much.

Dan Neuffer:
Through, through your mind, through your body. So yeah, It's very, very important and, but I guess the issue is why I ask you about it is, I mean, I wonder, do you know what the approaches of CBT in general for people with, with ME/CFS?

Cause, cause I guess a lot of people get the idea that it's trying to help you like not think of yourself as ill or and things like that when people get, I think, very offended. Because that's kind of suggesting that you're acting like it is psychological and that you're not really ill and all this kind of thing.

I mean, <Yeah.> they are talking to you about those sort of things. What's that part of the CBT? 

Overcoming Challenges: ME/CFS Relapses and Setbacks

Lynne:
We did. We did talk about it, and obviously, because some that particularly for me—as I say I could kind of very much came into it, and that was another way of me thinking actually, this illness doesn't exist. Yeah, I'm experienced there, and, and how how to deal with that within my head.

Dan Neuffer:
Sure.

Lynne:
It was a real conundrum. It's like, how can I have something that I don't actually believe is real? And, I mean, I don't really know how I, I suppose, how I came to terms with all that through the CBT. As I said, I think, you know, I did look at it and said, I think because obviously I kind of broke it down into what was actually fundamentally going, going wrong really.

And, and yes, and I know a lot of people and UK, and that was something that probably hindered my recovery to some degree as well because I say about the whole digging into things. And because I'm a nurse, and now because I've had CFS/ME myself, I'm very much, you know, wanting to try to improve the diagnosis of it and the management of it and, you know, ensure that healthcare practitioners do pay more heeds to it and, you know, are able to look after people more and things.

So I did a lot of reading around, and I joined one of the ME forums as well, where there was a lot going on, particularly in the UK, that there'd been a lot of bad press and things against the PACE trial, etc. and things, and obviously this whole thing about psychology. And again, within, that's where CBT, I think, has really got this very negative image from, that, you know, you can't talk your way out of it, and that's what people think CBT is.

CBT isn't that at all. It is very much about you getting in touch with you, yourself, finding out who you are, you know, really, and things, which that is, you know, really, I think, what you need to do. You know, find out who you are, why you do things the way you do, and, you know, then how that creates sort of the stresses and things on your body, really.

Dan Neuffer:
And so, that's just the thing, I guess.

You know, it has to come from a basis of acceptance of what's wrong in the first place and recognizing it's a physical illness, and that the nervous system is involved. But whether you get a flu shot, or whether you go for a run, or whether you have some psychological stress, it's all the same. The nervous system is not going to necessarily, you know. <Differentiate.> Differentiate. The stress is stress. And so I think the word 'stress' is something that, you know, makes people think it's just purely psychological and, and, and so, yeah, psychological elements are definitely a part of it for, for, for many people, but not for all people. And I think that's where it all becomes mixed in terms of how they get started, but let's trace it.

There would be nobody who has CFS/ME who would be experiencing a great deal of psychological stress once they're sick.

Lynne:
Yes. That, the, very, being diagnosed with it itself, it absolutely brings that whole stress.

Dan Neuffer:
I mean, the whole suffering and all the symptoms—it's terrible, right? And that brings a lot of stress.
In fact, I would go so far as to say that anybody with chronic illness, would be <Yes.> experiencing a lot of psychological stress, and that psychological stress would not just be adding to their experience mentally, but would also be affecting them physically. <Body. Yes.> So it's not just with CFS, right, where we have a maladaptive stress response, but also any illness.

Lynne:
Yeah, absolutely. And I'm just saying chronic illnesses, particularly, I mean, people, I think, you know, to take cancer, for example you know, people kind of accept now that you probably do get CBT as part of that. You know, it's all I think it, it's often to do with, and which is, I think is that there's a whole problem.

It is this whole labeling system of things as well that causes a lot of the problems. You know, it's still like, you know, we don't even really still have a, you know, a proper name nationally, internationally, globally, you know, for CFS/ME. You know, it's still sort of very crazy that it's kind of comes under so many different terms and things as well.

You know, that really doesn't sort of, you know, help at all because people will... some people I've kind of talked to that hate the term CFS. You know, a, a lot of people, particularly who have had ME for a long time in the UK, have really disliked it now being called CFS because they think that's something entirely different and, and is, you know, different to ME, which is very difficult, you know, all within itself and things as well.

So I, it's...

Dan Neuffer:
Yeah. Well, there's a little argument. I mean, if that's just a word, I mean, <Yes.> it has to be something else. If I call ME/CFS then it's not something else. <Yes.> But if I do chronic fatigue, for instance, that's something. <Yes.> How people who are just tired, <Yes.> that's not the same as ME/CFS.

Lynne:
It's, it's like a symptom of symptom. Other things, obviously, that symptom.

Dan Neuffer:
I, I think most people with CFS would, you know, love to have chronic fatigue as opposed to CFS, you know, because just to have a bit of fatigue, you know what I mean? That'd be a walk in the park, wouldn't it?

Finding Support and Adjusting Mindset

Lynne:
Fatigue itself is, you know, what is fatigue? All persons, you know, fatigue is, you know, it's I, I, you know, I keep bandy about the term. I feel sort of, you know, so tired, so fatigued, et cetera, things that, you know, no, unless you've had CFS, I mean, you, you don't, you know, you don't appreciate really what that fatigue really is things. I mean, certainly around the labeling, that's something I say, I'd say I struggled. It was good for me to have a label.

I did have a little bit, I kind of felt conflicted a little bit with my husband. Absolutely fantastic. And obviously, he's, he's really supported me in his own way. Because of the type of person he is, you know, and actually, I mean, I do respect him, because that, you know, I love him to pieces, he is a wonderful, wonderful man and he really has supported me.

But he does that actually by kind of being the other voice of things in a way, and he very much said to me, I was so relieved when I got the diagnosis and said, oh look, that's great, isn't it? You know, I know I've got CFS/ME. I can do something. He said, it doesn't matter what you call it. He said, I don't care what you call it.
He said, you know, I can see you are ill. I know you're ill. It doesn't matter. You could call it, you know, the disease with blue and pink spots, you know, you can call it whatever you like, he said, but you know, just learn how to manage it and to, you know, sort of deal with it and things and, and it doesn't matter.

And because I guess I think to some degree because I was, I was, when I was part of the, the online forums and things as well, I'd kind of, you'd get into quite involved conversations about terminology of things as well, et cetera. And that of course in itself adds extra stress and, you know, as I say, and one of my big problems, which is what my husband was trying to make me not do, was overanalyze things because he says, you know, you're just getting yourself wound up.

Dan Neuffer:
It's a complete waste of time. I don't want to get into the whole CFS/ME discussion because I'm like, it's just a word. And when they say, 'Oh, CFS is something different,' yeah, no, it's not. That's just what some people call ME. <Yes.> But what really is different is quite a bit. <I've got over that.> You know? <Yes.> So we're talking about an illness, not just one symptom, you know, and a huge difference.

So, okay, so you did the CBT, and it helped you resolve how you were experiencing stress, helped you deal with all the challenging and troubling things that you'd experienced leading up to becoming ill. Was that it? I mean, did that just make it all go away?

Implementing Pacing and Lifestyle Changes for ME/CFS

Lynne:
So, I wouldn't know, I mean, alongside, I mean, because again, when I was diagnosed, and then I had, so I say I wait, I was referred to the November 2015, diagnosed March 2016.

I didn't start CBT until September 2016. So in that interim time between being diagnosed, another element of my treatment plan from, from the CFS service was about looking at how I manage my life. So pacing, basically. You know, that they had a very good guide, which I sort of, you know, did initially of, you know, recording exactly what I was doing, how I was feeling, et cetera, and things as well.

A big, important aspect actually for me that really did help was managing my sleep, or sleep hygiene as, as, as they called it, because actually that's something I don't think I've mentioned is within my symptoms particularly. I mean, I did, I was kind of suffering an awful lot with insomnia, just not being able to sleep, not being able to switch my brain off and, and things full, you know, full stop really, and particularly at night.

So obviously that added to the exhaustion so that the sleep hygiene element of, of that, the it was all sort of self-made. It was, you know, information that was provided. So by then, you know, kind of just work your way through a little workbook, having like that, really, and it talks about things, you know, making sure you're sort of going to bed at the same time, et cetera, and things, making sure you're, you're not kind of overstressing your brain.

So, you know, before you sort of go to sleep and things, making sure you're ,not sort of, you know, going on a lot of devices, you know, and things or whatever to relax your brain. And then within that as well, and then it came a bit more when I started the CBT and was obviously looking at, ways to, to relax.

So, things like mindfulness was the big thing, really, that came in. That was, I suppose, I touched on it a little bit before I started the CBT. But that was definitely something within the sessions that, that came out, that came from my, my therapist. She said, 'No, we, we, this can be sort of really, really helpful' and things.

So I, I, when I started doing that, where I was then really fully able to switch myself off fully from things by learning mindfulness—just to learn to be in the here and now, et cetera. So, that for me was probably a really big part of, of aiding my recovery.

Dan Neuffer:
And how often did you meditate?

Lynne:
So, I mean, usually, I'd kind of set myself probably to, to make sure I did it at least every day, even if it's just sort of five, 10 minutes every day or so.

There's sort of so many different, I mean, bits and pieces things out there that you can access as well you know, online. Most, all of these, I mean, all, all of these things I did were all sort of free. There was nothing, I didn't sort of, you know, ever go buy into any therapies or anything aimed at, you know, sort of things.
So, it was mostly about the biggest thing that I found was something called just the body scan, I just found was absolutely brilliant. I think it's probably sort of about 20 minutes long, I think, for the whole thing—just learning how to breathe and focus on your body and things.

It kind of, because I was doing that regularly, I kind of got to the point where I wouldn't ever get to the end of it because I'd fallen asleep or such things, because it really had this sort of good effect. And within that program, I was around that one as well, there was sort of different things you could, you know, learn about as well. There was this different sort of stresses, you know, about things, about your breathing, et cetera, and things, and...

Dan Neuffer:
But the meditation is quite short like type of things.

Lynne:
So, yes, so just short meditation bits and things. So, not, not particularly with, no, really with those, with those meditation sessions, and things, really. Those were just, I use music, et cetera, and things, I suppose. I sort of set myself up a nice little comforting music playlist type thing, which as well, which I'd then go and obviously listen to, you know, sort of switch on, and which helps.

Dan Neuffer:
Not just doing particular strategies, but it's like you were changing your lifestyle.

Lynne:
Yes. Yes. Very much, like, yes, really.

Dan Neuffer:
How would you, How would you, I mean, obviously we took like a sleep and. the pacing, <Yes.> but how do you then spend your day?

Lynne:
Well, because, well, I mean, I'll just say, with the, with the initially sort of starting the pace, it's kind of looking about what, what I was actually doing and noting. Also, I spent an awful lot of time to begin with, because of the fatigue, et cetera, really not doing anything very much.

So then you kind of get your baseline, then sort of starting to do things and gradually kind of adding things in, so a little bit of doing a bit more, doing a bit of housework, but then making sure you can put in a rest period, et cetera, and things as well. The other thing, as well, with part of that was, was making sure I was seeing friends as well, really, or, you know, sort of particularly, I mean, I do have a very good close friend who I do see. She was very supportive and helpful as well. And, and those friends as well were, were very receptive and knew what was going on, and accepted of the CFS/ME and they'd know that some, some weeks I'd, I'd have to cancel, et cetera, and things, you know, but other weeks I'd be fine. But, you know, they allowed it things to go, you know, at my pace and things.

It's gradually just kind of, you know, starting to slowly add things back into my life. Obviously that the problem to some degree is life doesn't stand still. So, things are still changing, you know, it's just, things were always sort of still changing at that time. And again, 2016 again, was a big year.

Okay. I got my diagnosis, et cetera, and things. That was the year my daughter left home and went off to university, you know, et cetera. And with that brings its own changes of it, whole things with, you know, changes of relationship with me and my husband, because, you know, she'd left home, it was just the two of us.

So, yes, yeah, absolutely.

Achieving Recovery: Key Milestones and Reflections

Dan Neuffer:
But when did you start noticing changes? I mean, I mean, you're doing all these things, but they're really making a difference. I mean, when are you thinking something's changing and what did you put it down to?

Lynne:
Yes, I think it was the starting to look after myself or, you know, to, to, yeah, sort of do things for me to actually, to finally accept that I deserve my care as well.

You know, so, so to, to look after me and to do the things like I will go and see my friends, and I will sort of go and visit my friends, and that's important. So that's more important than me doing that thing for work that they want me to do, you know. And it's that, that's the other thing as well, the work obviously changing how I worked, et cetera.

I mean, that, that was like a big part of things, and probably, but again, in 2016, which did come as a big, huge relief, and I did start to feel a lot better, was the where I'd worked for the past 13 years, I actually resigned and left. And I, I was, I'd got another job somewhere else, which I was doing at the same time as well at that time, and that really helped.

So this was obviously a place where I'd gone through all the stress back in 2012, et cetera, and things, and that helped an enormous amount, a lot of pressure off and things as well. Brought in it's, you know, within it then, you know, I had to settle into a new job, et cetera, things that's lovely. I was on much more reduced hours and things.

So but they were really great and sort of helpful. I was, I was only doing eight hours at that point in my life. So I was, I was able to then just gradually start to build up my life again and get into a new routine and looked after me et cetera, and things.

Dan Neuffer:
Do you think about the fact that you're still working hours a week? I mean, do you think it would have been more helpful or less helpful to not work at all?

Lynne:
I think I was lucky. The eight hours a week that I was doing the job I was doing, it was probably only doable for me to do that because it was doing part of the jobs that I was particularly good at, that I particularly enjoyed, and were very specific parts of the job. Whereas the old job, when I, when I kind of stopped working there, where they'd not been greatly supportive of my diagnosis and things either, and they weren't particularly willing to make the necessary changes for me to, to deal with with the diagnosis and things. If I'd had to stay where I was, then probably not working would have been better.

But again, as part of this, that was something, this is something that, that my husband was very much kind of parting with me that. Because of my history of depression, and how I'd been, and quite rightly, he was completely right. I do agree now because I was lucky enough to get a decent job. I think I would have struggled more not having that routine of going out to work, having at least that definite to... I think I did, I can't remember now, actually, I did one morning, one afternoon a week, I think it's Monday and a Friday, I think it's Monday mornings, Friday afternoons.

Having that structure in the week was important for me, you know, mentally wise, particularly really.

Dan Neuffer:
I think that's the case for everyone, Lynne. It doesn't matter whether they have a history of compression or not; having nothing except your illness and being at home. <Yes.> That's their soul. <Yes. Yeah.> That's very stressful and so yeah, having a little bit of work, if the work doesn't stress you out, if it's manageable, it's not so much that it triggers you. Like, it's within your pacing strategy if you like. I find people tend to be quite supported by that.

So change of work, things were going a little bit better. This is 2016, you got diagnosed, started pacing, started CBT. 2017—I guess you're feeling a little bit better. But how much better are we feeling, and what are you thinking? Are you thinking, 'I'm going to get well'? Are you thinking, 'This is just better, that I'm managing it'?

I mean, what, what, what are you expecting?

Lynne:
I mean, yeah, I mean, at that time, I was, I was still kind of hoping that I would get well eventually. I still, I was struggling still at that time with the whole concept of recovery. And again, we're back to labeling words again and what it all means, et cetera.

And cause, another big part, I think in the end of my recovery, which could be a little bit of a a difficult, not difficulty, is I was still part of this, forum, this online forum that I'd found very helpful to start with, et cetera, and things, because it's lovely to, to find it, to, to meet a load of people who get you and just completely understand. You don't have to explain yourself at all, and things that was wonderful.

But most of the people, unfortunately, who were on the forum, et cetera, had ME. And again, they didn't like the CFS term. They've had ME, and from my perspective, looking at things, they've had it for a long, long time, many years, et cetera, and things as well, and weren't always necessarily open to new ideas and things.

And so I actually ended up kind of having a lot of conflict. So in the end, I had to withdraw from the forum, really, which helped a lot because that was obviously kind of maintaining negativity and things really and, and stuff. And I was in turmoil, sort of thinking, 'Oh, you know, there's this lovely group who really get me and things as well,' but they're holding me back, really, so it was quite difficult to, you know pull away from that.So, but that certainly is another factor that helped, you know, to, to be, be more positive and think, you know, 'No, actually, you know, this, this is possible to get better. I can see this because I am feeling a lot better.'

Dan Neuffer:
So, did the the psychotherapist and the clinic that was teaching the patient, did they talk to you about recovery, or did they just talk to you about management?

Lynne:
They just... I mean, they did sort of talk about recovery, really. And we did, because we did have sort of quite good discussions because, really, because of the whole thing about when I was going through the whole, but you know, 'Is it possible to be, you know, to not have it and things, et cetera and then, and stuff.' And I said, but you know, and stuck on the terminology game for a while, and it's then kind of when I got over that and things, it's kind of, you know, 'Well, yeah, of course it is.'

And, and they were, you know, very much, 'Yes, it is something you can, you know, recover from,' although it's not terminology particularly they use. They, they don't, but then they don't say, you know, 'You're going to one day recover,' or etc, or whatever.

Dan Neuffer:
Yeah, because they can't guarantee it. You can't. <No.> It's not like... <Yeah.> But then again, we don't do that in anything else really, do we?

Lynne:
No, no, exactly.

Dan Neuffer:
Bacterial infection, maybe. <Yes.> But even a yeast infection can't be necessarily cleared up.

Lynne:
No. No, no, exactly, no. And very many, I mean, viruses, a lot of viruses and things, very tropical at the moment, obviously, but you know, we don't know how... Lots, lots lay dormant and things and stuff and could, you know, flare up again.

And yes, yeah.

Dan Neuffer:
It's interesting; we often think about health and medicine, that medicine fixes health, but actually, that's not the case. <No.> It can't be for some things to an extent <things>, you know, probably surgery. <Yes.> It's the one thing that really fixes anything, right?

Lynne:
Yes. You know that yourself, obviously, you know, you are, bless you when you went through your with the propend, isn't it? But yeah.

Dan Neuffer:
Had a few trouble from the surgery too. So, you know, you fix one problem, you create another one. <Another one. Yes.> But yeah. It is interesting. So then, at what stage, where, when, when was it then that you started to think, 'Okay, this is gonna happen, I'm gonna get, I'm getting well, I'm, I'm gonna make it'.

Lynne:
I don't think I probably ever felt like that. It's only, I think, since I've recovered, looking back, reflecting upon where I'd got to, that I realised, I've recovered.

Dan Neuffer:
Yes. Like a slow border. Where am I? What am I? Look at me. I'm doing everything. I'm not going to be sick.

Lynne:
I, I, I sort of split, you know. So through 2017, obviously kind of, you know, put everything into practice.
There was a lot of... I mean, the, my therapist and sort of part of their strategy thing as well, obviously, was actually teaching you about the, the boom and bust cycle, obviously, to break out of the whole, you know, how, why pacing, why you do have to take it so gradually and things. Because, you know, if you keep loading too much on, you're going to bust again. You know, and that sort of... so you have to kind of build up again and you're sealed, you know, everything's great.

And so, obviously, I did go through, over 2017, various stages where I'd felt a lot better, and thinking, 'I'm feeling better, this is good.' And I was really consciously checking myself for symptoms, et cetera, thinking, 'Oh, I haven't got those aches anymore. I haven't got that.' And everything's still based on the symptoms or, you know, therefore lack of, but not still thinking, 'I'm recovered.'

They're not never there. And still, having been times when I would. relapse, I suppose, to some degree. Where, where, you know, I'd then go through sort of periods of several weeks where I was really fatigued again, et cetera, and I'd start to get sort of the aches and pains and things back as well. And then, so that, yeah, so it happened a few times. Although I felt hugely better for, obviously, what I had done before, you know, before diagnosis and things. I was living life again a bit, but it was, it was probably still led by having the symptoms.

It was, I was still monstering. Yes. So, I was, the, the illness was still in charge, almost. It was, it still had its, you know, it was still, I'd still stop and think about things, thinking, you know, think, right, 'If I do that, what effect is this going to have on me?' And then, so probably, it, well, it wasn't really until, towards the end of 2018, that, again, I'd changed jobs a couple of times within that because my lovely, lovely job that I had, my eight hours a week, unfortunately, the surgery closed, and I had to find a new job, etc.

Things that put me into a bit of a relapse at a time because the only job I could find was actually some distance away, and I was traveling about 35 minutes to get there, 35 minutes home. And that, it's on the top of obviously having had changed a job to, you know, was being made redundant and things, you know, big stress kind of type thing again. Though, obviously it was, it was interesting because at that time, I knew that this is what the stress is. And so, I know I can expect to feel like this. You know, I know I'm going to feel like this because I am stressed. Because, obviously, I'd been through CBT at that time, so recognizing what was going on.

So it didn't kind of, you know, drop severely, you know, et cetera. It's, it's, 'This is what happens when people think like this.' Yes. Yes. Didn't think so.

And then because that wasn't really working out and things, I decided... I thought, 'This isn't for me. I'm going to have to find something else.' I'd got to the point there as well that we knew it's too much.

So, and I had to give three months' notice, which is the longest I've ever had to give in a job. That as well. And so, I'd sort of given my notice, which meant I was finishing around about October time, in the summer, 2017, 2018. And I had to give my three months' notice. And at that, it was kind of like, there was a point where I was thinking, 'I don't even know that I'll have a job to go to when I give notice, but I know that this isn't right for me.'

You know, and at that point it was, we'll just have to deal with what comes. Luckily, I kind of found, you know, another job and things as well.

Anyways, I went into that November 2018, I started there. And it was when I sort of started there that I kind of really looked back and I kind of thought, do you know what? I've not really thought about CFS/ME or anything to do with my life, particularly since the summer, really at all.

I'd suddenly kind of, I was just living, and it was only because I kind of looked back and thought, when did I last feel anything? When did I last, you know, sort of feel really achy or, or that I kind of wasn't coping with things, or, you know, I was having like a lot of headaches and things? And, and I really had to think hard and think, it's actually, you know, two or three months ago and, so, you know, really it's built on then, then since then. And, and then obviously, then kind of being happier with myself in that because the new job I went into has, was, yeah, it's probably one of the most challenging jobs I've ever had.

And so very bizarrely, you know, it's probably big, I never even particularly really thought, Oh God, this could trigger the CFS/ME again or anything. I just got on and dealt with it because I live life differently. You know, I'm much more aware of myself, and absolutely, you know, I, I, I could recognize that if things were getting to a point where things would become stressful. I'd do something about it.

You know, I'd sort of plan ahead, you know, sort of, you know, and, and seek help. I mean, that's something as well, obviously, a big part of it in very much being. You know, I'll do that, and I'd like to do things because I want to know it's done properly, etc. I suppose, to some degree, in the past, being a bit of a perfectionist and things, and there was something through the CBT that came out, it's kind of, you know particularly in work and things, you know, you have colleagues and things to help with that, you don't have to take everything on. And, and, you know, so it was learning to let go and to say no to things, and, say, looking after myself, doing what's right for me, not just, doing something because I think it's the right thing to do, and help others, etc. So...

Dan Neuffer:
It sounds like obviously slow boil recovery, getting better and better. And there can't be a point where we don't feel as scared anymore, do we? We don't worry so much about, 'I'm going to do something, and how is it going to impact me?' Because, you know, if you don't go for a walk and then feel like you have to stay in bed for two days, then you can go for a walk and just relax, right?

And did you feel like that your whole, you know, it sounded like you weren't even checking, you know, your body anymore to see whether...

Lynne:
No! No. And I don't say with the new job that I had, and I was kind of starting to do that, and it got to a point where I was kind of, I suppose, starting to think a bit, 'I really should perhaps step in and do mindfulness. I really should do my body,' you know, and I'd stopped doing all that regular things.
It's kind of got to the point where I thought, actually, this would be a time for me to do that again, so that I could, you know, to revisit that. <To support you, yeah.> To help to support and things. So...

Dan Neuffer:
Did your therapist ever talk to you about other things like behaviors around being ill or things of those sort of natures?

Lynne:
I mean, yes. We did, we did sort of talk about them to, to, to some degree.

And, actually, we got on so well, you know, we were so very good, and, you know, we, we had a really, really good rapport. Obviously, we kind of talked a lot because of the job that I do and things, as well as being able to kind of apply how I am as a nurse. How, how I, you know, making sure that I applied that to myself and things.

So, you know, about understanding, you know, the, the difference, you know, of when, when you're unwell and why you need to look after yourself, et cetera, and things as well. So, yeah, so it did cover everything that's supposed to, you know, you'd expect it to cover. We did obviously still look at things like, you know, diet things as well.

Not that I particularly changed my diet particularly or anything. It wasn't something, and there's the only other thing, which wasn't actually from the, from the therapy. That came from actually something that I'd read somewhere, and I do still actually take it as vitamin D. I do still take a vitamin D supplement.

That's something I started doing after diagnosis. And the only other sort of change I probably made sort of say dietary-wise or whatever it is, I, I, I, well I, drink mostly decaffeinated coffee, if I drink coffee and things. Although, okay, with that, that's not so much now. I, I will, I'll always have, I've always kind of in my morning, one of these lovely coffee machines that you can make your lovely, you know, put your pod in and things.

And I always have that as caffeinated. Obviously I've always had that, but mostly, if I have any other drinks during the day there, it's decaf coffee. And, but now if I go out, et cetera, and things I'll have, you know, whatever, lovely latte and you know, things, whatever.

Dan Neuffer:
Did you do any other sort of any other treatments, or did the doctors offer you any physical treatments? Did you do anything else this recovery?

Lynne:
No, no, I, I, we didn't, no. But I, I think because we were kind of happy that I was managing it, managing the pacing and the kind of thing sort of myself that we didn't, you know, sort of particularly need to. So, I know often, I might notices of other people that have seen physiotherapists, etc. for sort of activity programs and things as well, but, but no, I didn't do that.

Dan Neuffer:
Was exercise part of it?

Lynne:
I mean, yes I mean, sort of started walking. I mean, actually, before I was, I was ill, I, I mean, I was quite active. I mean, I used to enjoy really, really enjoy swimming. And my daughter, who was kind of about 11 at the time, and I just always remember that, you know, once a week, particularly as well, we used to go and cycle to the swimming pool and then we'd go swimming. But then during the week as well, I'd go swimming a couple of times a week, and I was probably doing around about a thousand meters each time, et cetera, and things. So...

Dan Neuffer:
If you exercise, presumably you got worse, you could flare-ups.

Lynne:
I felt awful. Yes, absolutely. I was living off the sofa, really just kind of getting up, taking daughter to school, coming home...

Dan Neuffer:
How do you getting up, going to work? I mean, did you try and do degraded exercise therapy? Was that part of the offer to you?

Lynne:
I, its probably, yes, it kind of was, but not sort of said as such, and certainly was kind of left to me to manage. You know, I'd say I didn't kind of have any involvement from any, you know, physiotherapist, et cetera, or anybody. I, I just kind of set, set into my own sort of, you know, diary kind of thing that, you know, yes, we'd, we'd kind of start walking, you know, a bit more, making sure I'm putting some regular exercise and things in. I mean, 'cause certainly I know when I was kind of very ill, I mean even things like just going to the supermarket, shopping, et cetera, you know, completely used to tire me out.

Dan Neuffer:
So, I mean, like you do some walking and adding that to you're saying, I mean, aren't you like scared? I mean, you know, that's gonna make you more sick, right?

Lynne:
Yes, absolutely. To begin with, I think it was just, just really kind of trial and error with, with, with doing it really. And I suppose...

Dan Neuffer:
Because many people don't persist. They go, well, we'll trial and error. I'm not doing it. And I get really sick afterwards so...

Lynne:
So don't do it again, but I just kept persevering with it, really. I just kind of continued to, because I knew, actually, that I actually, yes, I felt sometimes would feel much more tired afterwards, but then I'd perhaps then make sure that I didn't do as much next time. So it's really just that very small incremental increases in it, really.

And the good, it was also, I suppose, more recognizing the benefits of the fact that it really did help mentally though as well, sort of getting out and exercising, and, and knowing exercise, you know, helps boost your endorphins, et cetera, and things. So you're feeling better about things as well. So that was important.

Dan Neuffer:
What about the days you weren't feeling so good? What would you do then?

Lynne:
So, I mean, I'd still sort of try to ensure that I do something, but I probably would do, you know, as much at all, you know, or anything I'd, I'd do, I'd do less on days if I, if I really didn't feel like I needed it, you know, it would be, 'No, I don't need to do that today.' And a lot of that, again, is back into... So, no, no, it's very much...

Dan Neuffer:
It's a flexible, intuitive approach, maybe.

Lynne:
Yes, that's, that's absolutely intuition, yes. Yeah, it's very much what you need.

Dan Neuffer:
Let me ask you this question. So I guess we've kind of summed up your story. Is that right, do you think?

Lynne:
Mm hmm. I think so. Yes, I believe so.

Dan Neuffer:
And you know, there's many people, especially in Britain, who look great at exercise therapy, very rich, very slowly, deep increase, very fixed, and who try CBT, and do the pacing, and they don't recover. So, and this is an interesting thing. Doctors hate this, you know, and anyone in science hates this. <Yes.> Right? Because we love to, you know, if that's how it works, why isn't it working for everyone? So what do you think is the difference between when it works for people and when it doesn't work for people?

Lynne:
Ah, it's a very good question. I don't really know. I mean, although I, I think I suppose just reflecting on things, not necessarily just my, you know, just my sort of CFS/ME and things, but just generally within life is, it's just how you think about things, how you know, how you feel about things. It is sort of, I suppose, to a lot of degree, the mindset that you're in. And you do need to probably have a positive, you do need to be positive and have a positive mindset with it. And you know, just to think...

Dan Neuffer:
Why do you think that is the case? I mean, I'm not arguing with you, right?

Lynne:
No, no, no, no. I mean, well, really, I mean, to me, it's just, it's like common sense, really, because if you're going to be negative and, you know, you're really not going to achieve anything.

And I mean, I know that through my depression and things particularly as well, of how you feel sort of, you know, within that, that, you know, if you're going to constantly say buts to everything, if there's always like, you know, an up and a down, and yes, there is always like positives and negatives to things as well, but if you focus on those positives and I think the important thing probably though is, is not to, to set yourself up to fail.

That, that's probably the biggest thing as well. It's, it's kind of realizing that you really do have to kind of maybe set really achievable goals. I think it's the whole thing about thinking. Don't look at it and say, 'Right, I'm going to do this and I'm going to be recovered by X, Y, Z,' you know, by X and things.

And I'm, you know, can do this and this. It really is kind of a trial and error, but it's kind of every single little achievement in your day. Make sure you remember, recognize it and things and build, you know, build on that and try to forget any of the negatives that come from it. And, you know, eventually the positives do, I think, then start to outweigh sort of the negatives and things really.

Dan Neuffer:
How long has he been a nurse?

Lynne:
So coming up 33 years.

Dan Neuffer:
Okay. Wow. So you know about one of the things that the doctor does. She comes in, and the doctor will give him a prescription. 'Take these pills.' <Yes.>

Those pills often don't work, alright? <No.> And they don't work because they don't get applied correctly. Because when they're in the cupboard, they don't do that much. How are they supposed to put them in here and swallow them? <That's right.> What do you think is the percentage of people who don't swallow the pills? Go home with a strip.

Lynne:
Oh, gosh. I don't know. So it's probably about a third of people, I would think, at least.

I mean, I don't know. I really don't know.

Dan Neuffer:
Yeah, we don't have this positive mindset. Positive mindset. You know, I got really ill this year. Give me a break. Right? But the point is this. If you don't have a positive mindset, if you don't believe that we can benefit from something, then why would you persist with it?

This is, I think, the problem with the pills, right? If I don't think the pill's really going to help me, I'm just, I'm not going, I won't be able to take it. I think anyone with CFS/ME has gone through so many different practitioners who tell them all these stories, and all, come up with all these pills, and I'm not saying they're all bad. I mean, some of these are great pills. <No.> Right.

But the problem is, they don't fix us, or they only help for a certain amount, and then we go, 'Why am I doing this?' We don't even sometimes give it a chance, you know, because you take it like three days, four days, a week, and then we kind of go, 'I don't know, is there any point to this?'

And we stop .And, you know, maybe you have to take it for three months before anything can change. Right? <Yes. Yeah.>

That's the whole thing about positive mindset. I think it's, it's driving in continuous action because no matter what it is, it's only a consistent approach that can have any scientific outcome. <Yeah. Absolutely.>

There's no medication in the world or no treatment or therapy that works to treat us to once. Not many, like muscle cells, just our sons, you know, but, but on the whole, right? We need to take them over a period of time. And so yeah, I, I hope people are listening. And anyone who's arguing up about this idea of a positive mindset, I hope you listening. You can make some connection of whys, of course.

Lynne:
I know it's hard when, when you're, you're in it, though, as well. And you kind of think, 'But I feel so awful. How, you know, exactly like you say, how can I see a positive, you know?' And which is why it's, I think, you know, is an important thing of taking the, you know, which actually I think we are trying to be more aware of us, you know, society-wise and things as well. These days have become, of being more positive and, you know, sort of taking the positivity of that.

Even the tiniest little brightness, you know, at the day and things as well, is important. We focus far too much on negatives to the detriment of, of our health. I mean, you know, it's that's the big problem, I think, really.

Dan Neuffer:
It's very true. And look, I can tell you that I I'm not, I did a great job being positive to my recovery.
I was sitting here saying how important it is. I don't think I managed to achieve that because I've lost the belief that something positive could happen. I lost the belief that I could recover. I lost the belief in old treatments because I tried all that stuff, and none of it worked. <Yes.> I didn't want to know.

I could swallow 80 pills, right? I didn't want to go and see someone who couldn't swallow pills anymore, right? <Yes.> It was like, 'What she doesn't do, you know?' And and of course, once you get to that state, well, how can things change? If you don't see the future, nothing can change. And do you think that was the most important part of your recovery? That positive outlook? That positive mindset?

Lynne:
I, I mean, well, yes, definitely, but I think if, if you don't have that, then you're probably not going to, to, to, to make it or, you know, to, to reach the whole, recovered stage as opposed to kind of being partially recovered, for example, you know, or, or something as well.

Say it's, it's very much, I suppose, like as I say, you know, that where that switch came in me, where I no longer, I say, I don't particularly know when it happened, say, I became aware of it afterwards, you know, knowing that I'd recovered because I was just no longer thinking about it. And, purely because I, I just almost, because I think, some degree, to be, to be positive and things as well as within that, you just have to be positive and also then get comfortable with how you're living as well.

So within that, within the bounds of, of the illness at the time and things, sometimes just almost step back is a positive thing to think, 'Well, look, you know, hey, I'm here where I am. Let's make the most.' And that's actually being positive though. You're saying, 'Right, okay. I've tried this, I've tried that, it's not worked. Let's just sit back and let's just think, okay, I'm here. I'm alive. You know, I'm, I'm living. Let's just go with that.'

And from that itself, that's sort of actually a positive action, you know, because then from that, you would then gradually start to change because by the very nature of life, life, you know, we do change. Everything changes constantly. So, so even not doing anything for a while is positive, you know, because the more sometimes you are trying then, you know, that's the more stress you're applying, et cetera, and things as well. So.

Dan Neuffer:
This is really, you know, interesting, and that's why I'm listening carefully because, you know, we're talking about this thing about how important it was to be positive and everything, and you're telling me you don't have phase three depression, right? < Yes.>

So now, if anyone's going to be challenged, you know, I mean, what an amazing story you're telling, Lynne, that you found the resources when you were not resourced. Because when we, I mean, suppression, we don't, we don't really access that part of ourselves that says, 'I'm going to be positive,' so I have to blah, blah, blah, you know, all this sensible talk just isn't there, right? <Doesn't exist. Yeah.> Doesn't exist.

And so I'm wondering, what was it that allowed you to access that, that most important resource? Because, and, and, and just to add to that, I mean, obviously, I noticed that you were talking about really mindfulness in a way, because you were saying it wasn't really about what you're doing or what's happening, but really how you're interpreting a situation. <Yes.>

Because if we interpret the situation positively, then there's a shift that's happened immediately. And this is the only place you actually really live is in the, in the present moment, isn't it?

Lynne:
Present, here and now. <Yeah.> Yeah.

Dan Neuffer:
But I mean, how did you, was it through mindfulness do you think that you accessed this, this positivity, when you were handling results?

Lynne:
Well, I, I, yes, I think so because it, it, it probably did kind of clear my brain, I guess, you know, sort of enough to I suppose the biggest part when I, when I look back on things and how, even when I'd used CBT in the past for depression, etc. and things as well, is I'd still not really put into practice things that I learnt then, at that time, about looking after me.

I know sometimes a big sort of thing that I, I often say to my patients that I see and things now as well, and about things is, you know, you do actually have to learn to be selfish. I've spent my life being selfless. You do have to learn to be selfish, which I think is probably is a big part, part of it as well. Being able to then to look at the positives and things, and even if those around you are, you know, saying something entirely different things as well, it's kind of going on with that. But what is right for me? You know, it doesn't work for you. You don't think this is right, but I know I can feel like, you know, this is right for me.

And I think I got a lot of positivity from that. I think because of the depression, I very much didn't value myself or my own thoughts and things as well. So I think through doing the mindfulness, et cetera, as well, it allowed lots of voices in my head, you know, et cetera, you know, thoughts and things or whatever. So I was able to kind of properly look and see myself as a human being, as I, you know, and things and to know that I'm worth it. And that's probably the most positive thing, really, at the end of the day that came out of it, thought, you know, I want to do this for me because I'm happy. I want to be happy.

I'm fed up being miserable. I don't want to be negative. So I want to be happy. And I always say, I mean, it's one of the things, very big things, I've always taught my daughters is, you know, unless you're happy within yourself, you know, unless you love yourself others probably won't because you kind of almost... you, you emit what you feel as well. So if you're giving out negative vibes, you're going to get negative vibes back. If you kind of, you know, have a positive outlook and things, then it does attract more positiveness, et cetera.

Dan Neuffer:
I think these are such awesome, wise words about the importance of self love and compassion.

Lynne:
Yes, yes, that's absolutely.

Dan Neuffer:
Giving yourself a break here, you know. <Yes.> Let me ask you, I mean, you know, obviously you talked about a long-term challenge with depression, and obviously when you've been sick with ME/CFS, I imagine that was even worse. <Yes, yes.>

Coming out of ME/CFS, how do you, how do you reflect upon your, your challenge of depression now? I mean, How has it changed?

Lynne:
Ah, well, I suppose, I mean, to some degree, I've not really thought about it, you know. I mean, that's, that's interesting. Good question, with me. Because I, I mean, I certainly don't see myself as a depressive person now. I mean, I, I didn't particularly when I had to go and I was diagnosed with clinical depression, you know, for all the years, et cetera, and things as well.

Because I've, I've always, you know, I've personally felt, I've had a positive outlook on life and things. It's always been kind of quite crazy. And people always, with my history of depression, always very much were kind of like, <Really?> very bemused thinking, 'You cannot be. How? How you? You know, you're, you're not depressed. You are the life and soul of parties, et cetera, things I, you know.' I've always kind of getting that. And, but I think it's because of that positivity and things that I've, I believe that now myself. I've, I've, in the past, I've never believed in myself. I didn't think of myself. I, I, I just existed, whereas I live now and, and I know who I am.

You know, and that's it. <Fantastic.> You know, it's, this is, this is life. This is my life. <Yeah.> I'm going to live it and I'm not gonna waste it.

Dan Neuffer:
Sounds like CFS has taught you a few lessons along the way.

Lynne:
Absolutely. It did. Absolutely. Yes. Yes.

Life After Recovery from ME/CFS: Maintaining Health and Wellness

Dan Neuffer:
I guess, to finish up, I mean, has there been any special moments since you've recover now? How long have you been fully well? A couple of years now, is that about right?

Lynne:
So, must be, it's kind of yeah, about 18 months. <About 18 months.> Yeah. Actually nearly two years. I think it was about summer 2018. So it's coming up to a couple of years, really, so I think.

Dan Neuffer:
Has there been any these particular moments where you've come, come, 'Wow, you know, this a can't believe I'm doing this,' you know, here's something that was just completely possible to imagine whilst I was here.

Lynne:
Yes. Last year, we went on a cruise, our very first cruise. We went on a Mediterranean cruise, and we, so we went to various places in Italy.

And being in Rome, we did a walking tour. And that, for me, I, I do remember at that time thinking, you know, I've always wanted to go to Rome, you know, see the Colosseum, et cetera, and things as well, look around Rome and things, and that was a real, 'my goodness, I'm here in Rome, and I'm spending two hours in the heat, walking around and things as well,', which absolutely, you know, even a year before that and things would be something that if you said that, that was going to happen, I'd be, 'no, no way, absolutely no way'. And the amount of walking and things we did, and even just on the ship and, you know, things as well, and, and sort of that levels of activity with, previously, it would have been, 'no, there's absolutely no way, that won't happen.' So that, that, yeah, very much last year really, really make me realize, yeah.

Advice for Others on the Path to Recovery From ME/CFS

Dan Neuffer:
What would be your, I guess your final message then? Your final message to people who are still seeking and perhaps have tried a lot of different things without success. And yeah.

Lynne:
Yeah. Really, I just, you know, I, I remember being back where they are now, and I, you know, I, as, as you know, part of my story is discovering CFS Unravelled, and that was, you know, really, really helpful to me and things and, you know, and sort of your web, you know, the website and itself and things was, was really helpful.

And looking back a bit, like I was just saying about being in Rome, looking back and thinking, I don't think that'd ever been me, you know, ever at all and things as well. And I never really bothered at that point, looking at recovery interviews or anything really, because it just wasn't something that I thought, you know, that won't ever be me.

Yeah, I'm here again, you know, like I was in Rome as well. And, and I'd just say, you know, there is, that is always possible, no matter how long you've been ill. But just try to sort of remember to, to be you, just, just to live, sort of, almost stop battling too hard. Really, you know, and just, just learn to trust yourself.

You know, and, and take the the little positive things really from from every day because, you know, even if you're ill, it's your life. I'm a bit of a faceless probably saying, you know, life gives you what, you know, you can what you can deal with and things, and, you know, so take the tiny little positives from that. Just move forward and stay positive.

Dan Neuffer:
Wise words and thank you. Thank you so much for your wonderful advice and your wisdom today, Lynne, and thank you so much for sharing your story.

Lynne:
Lovely. It's great to do so. Thanks as much.

Conclusion:

Dan Neuffer:
Thanks for tuning into this episode of the podcast. We hope you felt supported by it. If you have any questions, feel free to reach out to us via CFSUnravelled.com and make sure that you subscribe to the podcast on iTunes or wherever you listen to it.

And you can leave a comment and a 4 or 5-star review if you feel so inclined. If you want to make sure you get your free copy of Discover Hope and get notified about all new recovery resources and interviews, including recovery interviews, subscribe to us via the website. Check out some of our other podcasts. I hope you'll join us again soon.