208 - From ME/CFS to a Full Life: A Mother’s Perspective on Her Son’s Recovery

Clare shares how her son went from a viral crash at thirteen to full, active living through pacing, autonomic nervous system retraining, and Mickel Therapy. We trace the medical dead ends, the messy middle, and the simple joy‑based habits that tipped him into lasting recovery.

• early sensitivity shaped by stress and frequent infections
• onset at secondary school, loss of attendance and friends
• visible and invisible symptoms including brain fog and dizziness
• NHS pathway, helpful GP, limits of NICE‑aligned care
• colour‑coded pacing and activity management to 40 percent
• ANS Rewire lifting function to about 80 percent
• relapse at university, boundaries and motivation to recover
• Mickel Therapy linking emotions, boundaries and symptoms
• play, novelty and joy as daily nervous system tools
• caregiver strain, what to skip, what to double down on
• life beyond illness with work, travel and climbing

Clare's Facebook Group for parents of children with Long Covid, ME/CFS: 
https://www.facebook.com/share/g/1Ch4nxkujg/?mibextid=wwXIfr

For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com

(music credit - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter 0:56

Hello and welcome to this episode of the Long COVID podcast. I am delighted to be joined today by Claire, who is here to share her son's recovery story from ME/CFS. So I'm really excited to hear this story. It's going to be really insightful hearing it through the perspective of someone else and also someone who is a young person who's recovered. So, Clare, welcome to the podcast. I am so excited to have you here.

Clare 1:27

Well, it was very nice. Thanks for asking me.

Jackie Baxter 1:30

Oh, I'm I'm delighted to have you. Um, so what would be lovely would be to hear a little bit about your son and what life was like before he became unwell.

Clare 1:43

He um was a very friendly, happy um child, apparently, uh, very eager to please. Um one of his friends' um mothers asked him, um, so this is his his friend was called Chris, and he said, So, Chris, who's the happiest child in your class and when he was eight? And he said, Oh, and he said, My son. And um he said, Oh, that's really interesting. And and who is the nicest person in the class? And he said, Well, he is as two, and and it was very much him. He was always trying to please and be friendly and be kind to to everybody. Um, but he did find it a little bit difficult socially. Um, and he's one uh two children, and he's got an older sister who's five and a half years older than him, and um he was more of a chap who stayed tended to stay at home. Um he went out with his friends, but um they were very football-y chaps. Um, and he was more of a play Lego and make airplane models and that sort of type of person, so less physical. And and part of that was because he was always tired. Um, so from a very young age. Um, he's my third child, so my first child uh was born with um spinal muscular atrophy, which is a type of motor neuron disease, and he died when he was five months old, so it was completely horrendous. Um and at least we didn't have any other children then because I've no idea how we'd look after any other children uh with when he was around. Um, so when my next child came along, um then um I was kept on checking to make sure she was still breathing as a baby, so not exactly what you call a very relaxed mother. Um, and then when my son arrived, I kind of uh was a bit more relaxed with him. But I don't think I was a particularly relaxed mother. I would think I was a little bit too intense. Um I know quite a lot about psychology and child development and did too much studying, I think. So I was always trying to do things right as a mother. And and then his father and I didn't get on that brilliantly, but we stayed together until my son was eight. But um there was quite a lot of volatility in in the air, um, and we did quite a lot of um walking on eggshells to avoid conflict. So I think the reason why I think I'm saying that is I think that probably meant that from conception onwards, his environment interuterine and then afterwards um was probably full of stress, and that probably wired him to be more hypersensitive than he would have been otherwise.

Jackie Baxter 4:43

That's really interesting, and that you can kind of track that back. Um, and actually, I suppose with the benefit of hindsight. Oh, yes. Um, because I mean, you know, at the time you wouldn't have known any of this, would you? I suppose.

Early Life, Stress, And Sensitivity

Clare 4:57

Hindsight and a lot of reading later.

Jackie Baxter 4:59

Yeah, absolutely. And um what age was he when he became unwell? And I suppose also you mentioned that he'd been tired all the time. So had there been a bit of a lead up to this?

Clare 5:14

When he was born, uh, three weeks later, he got either viral or um bacterial meningitis, but it was touch and go. Um, and then he was just constantly ill with colds and throat infections and a bit of a temperature. He would never have more than about two weeks until he was about five, that he was well. Um, and always tired. Um, all his photographs had his thumb in his mouth because that was his only way he sort of could comfort himself because he was tired. Um and then leading up to the illness, when he he got some sort of viral infection in the October when he was in year eight, so he was age 13. Um, and apparently for children, um, October is the time they get MECFS, they go back to school and they pick up the viruses that everybody does, come around about October when the windows are shutting and they're all spreading it. Um, and so that's when he he just got a normal virus, and but it just seemed to last a bit longer. And then after a couple of weeks, I thought, well, he he must be ready to go back to school. And he he he would go in in for half a day, and then I get a call at work saying to come and pick him up, and and then he got he's stayed at school less and less and less, so by the following spring he was not going to school at all.

Jackie Baxter 6:38

And that October thing, that's quite interesting. I'd never thought of that. But age 13 is quite a stressful time at school, isn't it? You know, you're you're being told that you're making choices in your subjects that are going to affect the entirety of the rest of your life. Um, there's quite a lot of pressure in terms of that. Um, you know, you're you're also starting to move towards the years where you have more intensive exams. So there's an awful lot of that coming from school and and all of that kind of pressure. But I suppose October, you've also been back at school a month or so. You're starting to get into that time of year where the body does naturally have less energy. Um, there are more bugs around, so you're fighting off more. And also, I mean, I remember from school, you know, you sort of hit the ground in September and it was like new stuff, new stuff, stress. You've got to prepare for your exams, you've got to choose your subjects, fall behind now and you're stuffed. You know, there was an awful lot of stress around that time of year and getting it right from the beginning kind of thing. So to me, that makes an awful lot of sense when you said October's the month. Yeah.

Clare 7:57

And I think with him, it was a social pressure. Whilst he had friends in his primary school, he didn't really have any decent friends in his secondary school. And I think at that period of your life where everything is based around your friends and what your friends are doing and all the affirmation that you get from them, and he didn't have that. So I think that would have been a huge amount of pressure on him.

Jackie Baxter 8:21

Yeah, and I think we forget as adults as well how difficult it is to be a teenager. Um, like it's it's a very unsettling time, isn't it? And you know, you're you're sort of starting to learn who you are, I think at the age of sort of 13, aren't you? You know, you're you're into high school or secondary school or you know, and and yeah, friendship groups are shifting and changing. And it's a very strange time. Um, and I think, you know, when you're going through it, you probably just batter on through it. But with the perspective of of hindsight and having actually worked in schools as well, I'm thinking, my goodness, teenage years are hard.

Clare 9:06

Well, I know he said that um, well, if you've got to choose any period of time that um you're gonna miss out. Um, he says, I'm really quite glad it was adolescence. I mean, who wants to go through adolescence anyway? That's a very positive look at it.

Jackie Baxter 9:20

Yeah, that's a beautiful way of putting it, actually. Um, yes, yeah, absolutely. It it is it's a hard, you know, and we all have to find ourselves, don't we, somehow? And, you know, I suppose some of us do it several times, others some of us do it later in life. Um, but uh yeah, for sure. Um so you said that he, you know, was in school less and less. Um you mentioned the sort of fatigue. Um were there other symptoms as well, or was it sort of mainly fatigue that he was experiencing?

Clare 9:56

The overriding thing. Um, he had um, and I believe it's the same with long COVID, he had um a swollen second toe.

Jackie Baxter 10:04

I did have that. It's interestingly one of the more visible symptoms. Um, you know, we talk about these illnesses being, you know, invisible illnesses because you can't, I mean, you can see fatigue in some ways because you know, if someone's kind of collapsed into their chair. Um, but yeah, the the the toes was one of the things to me that was unsettling because you could see it.

Onset At Thirteen And School Decline

Clare 10:31

Oh, by this stage he'd got so many symptoms that it was we just laughed about it. Oh, that will be another symptom. So we had um before that, and for some years before that, every now and then he'd complain of um pain sort of in his heart region. Um, and later on I heard about um the perent technique and um lymphatic drainage, and there's a sort of a node or something, a lymphatic node that's around there. So I'm assuming that must have been that. But I mean, you know, I I tend not to panic about things, and when he would say all these odd aches and pains and stuff as the years before it, I would just say, Oh, I'm sure it's nothing. Oh, it's that'll be fine, it'll you'll get over that in a minute. Don't like to make things too big of things. Um, yeah, in that um the brain fog, um, there was a fair bit of that. Um, I was looking back because one of the one of the um uh programs he did was ANS rewire, and they um you had to score what your symptoms were. So yeah, the the main thing and post-exertional fatigue um and temperature, he had very little temperature control, and he'd get really flattened by if the temperature rose, he would get completely flattened by it. Um, and then nodes and his throat and his um his neck um and palpitations and dizziness. Dizziness was a very common one.

Jackie Baxter 11:56

And um, and what what was the sort of medical support around all of this? I mean, my experience with long COVID was that the medical support was pretty pretty minimal. And if you found a doctor who actually would believe you, you were doing really well. And and I did, you know, the doctors that I found were very empathetic, but not particularly helpful, um, which I thought at the time was was like, what's going on here? And actually, having heard other people's stories, I think I was pretty lucky. Um, but what I have heard is that, you know, actually prior to long COVID, which is when we're talking here, there was even less. Um, so what were your kind of experiences there?

Symptoms From Brain Fog To “Covid Toes”

Clare 12:41

Well, we had a very good GP. Um as so he he knew that I was an occupational therapist and had done my homework. So he tends to say, So, what do you think this is and uh what would you like me to do about it? So I said what I thought it was, and um I said that I've done some research and I found that the the best um ME CFS clinic uh was a Bristol and Bath uh CFS team run by uh Dr. Esther Crawley. Um and they they'd had a greater success rate than anywhere else. Um and I'd also heard that um if you don't get uh seen by a specialist treat uh treatment team as a child, your chances of recovery are about six percent, and your chances of recovery if you're um if you do get seen is something like I can't quite remember what it was, 75%, 80%, something like that, much much higher. So he kindly referred me to them. I I spoke to them and they said your GPS to refer them, so he just referred me to them. And I was seen three weeks after they got the referral, so that was fantastic. Um, we also got seen in amongst that um by the consultant, the pediatrician, who was less helpful. He said that it probably was M E C F S after a little while, but he said, but you can't diagnose that until they've had it for six months. And I said, Well, actually, nice guidelines for children say it's three months. Um, so I didn't actually think that his level of knowledge was that high. And he also said, So if he's not going to school, what is he doing all day? And I said, Well, he's having M E C F S. I just thought it was a silly question to ask. Um, yeah, so then the support we got after that, we had um we got seen by the consultant MEF MECFS consultant in in Bath and then referred to the slightly more local um person in and Taunton and um and Bridgewater. She had been a student of mine many years before, but she'd by then got a PhD in MECFS, so she was really good, and she taught um us a lot about pacing and um activity management, and we had a diary of colour-coded, you know, do this amount of red and this amount of orange and this amount of green, and try to balance it out to avoid the boom and busts. Um and uh we he was really, really good at doing that. She said he was much better than most of the kids that she saw, and he filled it out dutifully every day. Um and it really did help. It was very supportive, but it only got him to about 40% of his normal activity level. Um, so after I think about 18 months, we stopped seeing her because there just wasn't any more point. Um, and then I looked around to see what else I could find, and we came across the ANS Rewire program with Dan Newfer. Um, and we did that. Um there's a lot of online, uh not online, there are videos in those days. Um the videos are very long, and by this time he was about 16. Um, so that was long and boring, and and they were geared, it was geared to adults. Um even for me, and I've you know studied um neurophysiology at diploma level, I find it fairly hard. So if you have brain fog, it must be really tricky. Now, whether that's changed or not, I don't know, but it was a fantastic amount of information. Um, and then following the his guidelines, he did that from when he was 16 and three-quarters to nearly 17, and he got went from 40% of his normal activity level to 80%, having been plateaued for uh a couple of years by this stage. Um, so it was a it was you know a complete correlation. You there would be no coincidence that he was suddenly improving.

Jackie Baxter 16:59

And that's quite a big improvement as well. You know, that's a sort of double, isn't it? You said a sort of 40 to 80 approximately.

Clare 17:07

Yeah, and and that got him to the level that he was able to do everything that he wanted to do, you know, bearing in mind he he wasn't the sort of kid that was off playing football every hour of the day. So for the stuff that he enjoyed doing, he it didn't really limit him um at all. Well, you know, not not significantly. So it got him to up to about 80%, and that was good enough, and he didn't want to do it any further. Um, and you know, you you you can't lead somebody else's life, and so I was very frustrated that he didn't want to do any more, but there's nothing I could do about that other than try to persuade him. But you know, he's his own person, so I I couldn't do any more. So he was 17 at that stage, and then he did his A levels over three years, so he did two A levels the first year, and then added on a uh a third the second year, and then in the third year he finished them up and did one more of a bit of an A-level. Um, and that and then he had a year out before he went on to university. He couldn't bear to go on to uni straight away. Um, and then he did two years of of an engineering degree um and then came back absolutely exhausted and stressed out at the end of the second year and and wanted a year off. So um at that stage I'd already had the conversation with him before he went to university to say that if you come back from university because you've had a flare-up of your MECFS, you won't be able to stay here because I've tried to help you um in all I can. And um I I'm not prepared for you to carry on this way leading a life that's not as not as fulfilled as it would be if you got recovered. So if you are going to, if you if that happens, you'll have to go and live with your father. Um and so he knew that. So when he he did come back and um um and and he was ill, I I waited until he'd had the summer and had his his results of his exams and he'd passed them and he got a good grade, so that was good. Um, and then I gave him another week off, and I was just procrastinating basically. Uh the day came that I was going to set myself, this is the deadline, I'm going to remind her of that boundary. And then I thought, okay, well, I'll do it after dinner. I was kicking the can down the line, and then um uh it came to after dinner, and I opened my mouth to start to say it, and he said, I've been thinking that I might use um this year um to spend my time to recover and you know finish off my recovery. So um I was wondering what you'd advise. So I said, Thank the F for that, because I was going to say, I told him what I was about to say. So it we it could not have been better timed. Oh, that's beautiful. Yeah, yeah, that was oh, I was so relieved. So I thought he'd read all the notes I had made from all the studying I'd done. I said, Oh, I don't think it'll that would do. I think you know finding a recovery program would be would be better. And I said I can point out some, but he said, Well, we did that, um, mickle therapy, because we did one session when he was 13, but he was too young. Went in one ear and out the other. Although I I learned quite a lot from it. Um, so I was able to sort of feed him bits as the years went on.

Jackie Baxter 20:44

And could you just say a little bit about what mickle therapy is for people who haven't come across it? It's slightly less obvious than the other ones.

Navigating GPs, Clinics, And NICE Rules

Clare 20:52

It it was done by a chap, David Mickle, who uh was helping his partner to recover, and he was trying to figure out a way of doing it, and he he he found this way, and now he does it for other people. And then it's um somebody called Claire Caldwell, Caldwell has taken it on, um, but um added to it in a um recovery program called Mind Body Reconnect. So it's looking at how your body is reacting in the moment. Um, and so if you wake up in the morning and you're feeling really symptomatic, then that's probably because your your body, and it's more to do with your body than your mind. Your body is thinking that you're going to do just what you did the day before, and it can't bear that, it's going to find that really boring, so it sends you symptoms to say, you know, well, I've had enough of that, I had enough of it yesterday, and you're going to do it all again today. Um, whereas if you're wake up in the morning and you're feeling okay, and then you develop the symptoms, um, then it's probably because what you're doing at that moment in time, or the environment you're in at that moment in time, is creating a problem for you. And it's usually in terms of I can't really go to something like four emotions, your boundaries, your boundaries are being overstepped, you know, you're being people are talking to you in a way that's not kind, or they're asking you to do things that you're saying yes to, but you shouldn't really be saying yes to, or to do with guilt, I think that's one of them. And anger is a lot of it, sort of anger with what's going on and what's that people are around you. Yeah. Um, so I can't say I know a huge amount of I did, and I find it less easy to understand than the other ones, but the people there's a lot of people that would say that it's it's worked very well for them, and it certainly it certainly did for my son. So, anyway, so this was um October. 23. Um, so he phoned up the guy he'd seen when he was 13 and said, Hi, I'm now 21. Um, and uh so he did three sessions with him about one a week or a week and a half. The end of the three sessions, he was fully recovered. And I mean, I knew I absolutely knew that he'd get fully recovered. Um, and you know, they his OT consultant uh said, Yep, I have no doubt that he will recover. So I it never occurred to me that he wouldn't. It was just a matter of finding the right keys that would work and then um um unlocking those keys. So yeah, so he feels that he's um about about a month after he'd he finished the last session. Um he said, Yeah, absolutely fine, don't need to do any more. Um he says there's there's he's not stopped from doing anything, but he is still tired, he says. Um but he does feel he's uh fully recovered in that he can do everything that he wants to do without there's no there's no post-exertional malaise, um, there's no increase in symptoms. Um he but he just he does get tired, um, but it doesn't stop him doing anything. So he's been at work all day and um just been off climbing, and uh, I just heard him come through the door. So, you know, he's uh he he's a he's a well person.

Jackie Baxter 25:04

Yeah, oh that's amazing. And it's it's interesting, isn't it, how the sort of trajectory of the recovery, you know, my my experience was similar, you know, you in some ways, you know, you do all that kind of like stuff at the beginning where you try to get hold of a doctor and you try to get a diagnosis and you, you know, do all of the blood tests and and all of that sort of stuff. And you know, I I can understand why why that is important, but it's a bit kind of it's a it's a mess at the start, isn't it? And it's however long it takes you from there to start finding things that help. You know, some people find them quite quickly, some people take an awful lot longer, um, some people find all the wrong things first. I I did all the wrong things first, um, you know, and and some people are a bit of a combination of of all of that, right? Um, but you know, that kind of process of of finding the NNS rewire. Um we've had Dan Neufer on the podcast a couple of times, and I'm I'm a big fan of Dan. Um, and you know, that that sort of helped hugely along with the pacing that you were talking about beforehand. And it sounded like that was quite a sort of slow burn, all of that. And then there was the period where he then, you know, was was well enough, went off and did his A levels and went to university and sort of took a break from healing, I suppose, and then sort of came back and said, right, I'm done with this. Let's let's sort it out once and for all, kind of thing. And then that from what from your description was very, very quick, that kind of final route into the sort of full recovery. Um, so it's I mean, it's really interesting hearing different people's stories, um, because some, you know, everyone is different, aren't they? And, you know, people get sort of stuck and stalled at different points in their recovery, and some of them take longer, some of them take shorter. The sort of shape of this one.

Clare 27:04

I mean, I think when he he went to mickotherapist, he and he came back and he said, an awful lot of that sounded really quite familiar. I said, because I've been drip feeding it to you for years. So possibly the fact that that he had heard little bits of it might have made it a bit quicker for him than than for other people, because it is such a different way of looking at what the problem is and what the solutions are, that um that that I think for a lot of people that might have taken a bit of an effort to understand how A could be lead to B. And also one of the great supports I had was um a colleague who um when he was first diagnosed, she she she diagnosed it, although she didn't tell me um before I did. Um she said, Yeah, when he got the diagnosis, she said, Yes, I thought it does, because um she was a new colleague. She said, This is my first job after. Um I just recovered from MECFS, having been ill for the last two and a half years, um, and she'd done a lot, but the final thing that made her recover was mickotherapy. So that's why we went to that. Um my son knew her, um, and she'd come over and talked to him about it all again, age 13 in one ear and out the other. But um at least he knew that this person and trusted her that she'd recovered from using this, so yeah, we've made it more valid.

Pacing, Colour Diaries, And Limits

Jackie Baxter 28:34

And it sounds like you'd sort of maybe been planting the odd seed over the years as well. And um, I mean, I I think you know, one certainly from my experience and what I've heard from a lot of people is that kind of knowing someone or having heard of someone who has recovered and that kind of belief in recovery is so, so important. I mean, I remember the first person that I spoke to who said, Yeah, I've fully recovered, and I said, What? Um, you know, kind of thing. And it was, you know, and and for me as well, having heard of years and years and years of worth of people with MECFS, you know, in my mind, I didn't want to associate with that because the few people that I had known or heard of, you know, it was a life sentence. Um, you know, no one recovers from that. So I don't even want to associate my experience with that. And and you know, I was in total denial there. Um, but you know, you I mean, it sounds like you were a fantastic advocate for him, and that you sort of never never lost hope. Oh, it certainly sounds like you didn't. Um, and also knowing other people who had recovered must have been hugely helpful, even though I'm sure it was a really difficult experience.

Clare 29:57

The the first thing my friend uh gave, my colleague gave to me was um uh 50 recovery stories um about NECFS. Um so the the the first sort of introduction to the illness is this person's got better, this person's got better. So, you know, that planted the seed, so I'd never thought that he wouldn't, as long as as he did what was required. Uh, if although if he didn't do what he was required, uh I knew equally that he wouldn't recover. But it was a very long and very frustrating um difficult time. And and it was horrible watching him so ill and stuck at home, and he was absolutely bored, rigid, um, and lonely, and he'd lost all his friends, and it was it was a horrible time for him, really unpleasant. Um, and I remember him saying to me, he was lying on the sofa and his eyelids were swollen and he was grey, and he could hardly the only way he could keep his eyes open was to raise his eyebrows up, and he was sort of propped up there, and he said, not having a very good life, am I mum? And it was just awful. Oh, and I said, No, you're not. I said, but it'll get better.

Jackie Baxter 31:12

Oh my gosh, that must have been like, you know, it's it's awful watching anyone suffer, particularly if it's someone you care about. Um, I I don't have kids, so I can't possibly understand what that must have been like. But from what you're describing, that sounds pretty rough from your perspective, um, seeing him suffer like that. And how did you take care of yourself throughout all of this as well? Because, you know, we we know that, you know, those of us who are unwell at the time, I mean, you know, I was very reliant on my partner who, you know, for he has many faults, but he's a, you know, he's a good egg, he's a keeper, um, you know, and he did a lot for me. And I didn't realise at the time, I don't think the stress that it was putting on him, because I was far too busy, you know, not having a good life as you described it myself. You know, you you're so in that experience, aren't you, that you you sort of can't really think about anybody else. Um, but you know, in hindsight, it was like, yeah, that that was a lot for him. And and you as both a mother and a carer, who also had another child as well, even though they were older. How on earth did you manage to kind of take care of yourself and and sort of manage your own health, emotions, you know, all of that on top?

ANS Rewire: Breaking The Plateau

Clare 32:42

Well, I don't think it did a particularly good job. Um I mean, I I have a lot of good friends and a lot of very supportive friends and really good colleagues. Um and it was a port of work, so there was a lot of support around there. Um the OT I had was was excellent. Um his the home tutors that we had that would come to the house from the local authority home tutors, um they were very good. But it it was tough and I was frustrated and and I'm very proactive because I'm an adult, um, and and he wasn't. Um and as the years went on, I just got more and more frustrated, so I just had to give give up trying because there wasn't any point me learning anymore because I couldn't put any of it in action. Um, so I kind of gave up trying to recover, and um that was probably a great relief for him because I think it's it's really tough people pushing you from now, now I know this, people pushing you to do this and that and the other. You know, we tried a lot of things. We tried um homeopathy to begin with. That was the first thing that we tried, actually. Um, and actually, to begin with, the first um, I can't remember, a couple of months or something, he was just steadily losing weight because he was nauseous the whole time. Um he just couldn't eat um because any eating just made him feel worse. Um luckily he had a little bit of weight to lose, so he just got to sort of a normal, slightly under normal weight. Um but the one towel that the homeopathy homeopath gave him that that cured that pretty well instantly. Um but we carried on seeing her for about six times, but nothing else worked. And we tried um Dr. Teitelbaum some of his supplements, but they didn't make any difference. We tried the parent technique and that didn't make any difference. Tried different diets, um gluten-free and carnivore, and I don't know what else, nothing that they none of those things worked. It was it was all the sort of more emotional regulation, pacing, um, activity management. It was joy, well, really joy that was that that did it. Um so the only thing that really worked was finding little things that he he would find fun. So um I gave him a Rubik's Cube and he he very quickly learned how to do that. Complete my missionary to me, and he kind of gave him Diablo and he he learned how to do that and do all sorts of tricks and juggling, and he did that. Um so he had a set of these little sort of tasks and he he loved those. And I think we did bowls next, um, and then shooting gallery and kite playing um when he was able to get outside, and little tiny walks. Um, I volunteered for the RSPP and just so that we could get him out. We did a little tiny bit of weeding, started off at 10 minutes, and then we'd back go back. Yeah, so lots of things to keep him fun. There was a little time when uh that that when I realized what was happening. Um he was probably about 15, and he was um he'd spent the week breaking everything in the bathroom accidentally. Um, and I spent the week going up bathroom um fixing everything, and then he did something to the sink, and I needed him to hold the sink while um take the weight of the sink while I did something or other underneath it, and he was really doing it in a really half-hearted way, and I kept saying it to him, no, no, you need to hold it like this. No, you're pushing it too far back. No, now it's too far forward, etc. Um, and I've just been a right naggie mother. I'd had a week of of fixing everything he'd broken, so I was a bit cheesed off anyway. Um, and then suddenly he said, No, and I I can't do I can't do any more. I I he says, I feel really ill. And so he put it down and he went and sat at the top of the stairs with his head in his hands, and he said, Oh, I feel terrible. And his speech was beginning to slur, and and and so I stood there just watching him, and I thought, well, he had been completely fine five, ten minutes beforehand, and now he's his eyes were swollen and his face was grey, and he was obviously feeling absolutely lousy. And I thought, ah, I wonder if it's me. All I just fed him ten minutes of negativity, um, which I don't blame myself for, you know, it's just just normal life. Um, but it was 10 minutes of negativity, and that did something to him that made him symptomatic. So then I said, just have a rest for a minute and come come on back. So he came back after a few minutes, and everything he did that was even remotely okay, I said, Oh, that's really good. Oh, you're holding that perfectly. Oh, this is this is going to be fine, you know. And we were really getting this sorted now. Excellent idea, etc. And we'd got the sink finished in about 10 minutes, and and he was completely fine. So 10 minutes later, he was absolutely fine. Whereas if if I'd let him stay at the top of the stairs and then probably go and lie down and just sit in front of his his his mobile, it probably wouldn't have been until the following day that he would have been okay. And it was at that moment I thought it's his thoughts that are creating this. And that's when I I was suddenly able to understand how what the key was for him. It's not for everybody, but that was the key for him. It was what was going on in his head that was driving the condition.

Jackie Baxter 38:35

So it was this kind of the thoughts, the emotional stuff that was going on. And um, and I loved what you were saying about the the sort of the tasks that you were giving him and the challenges um, you know, with the the Rubik's Cube. And and as soon as you said all of that, I'm thinking, you're accessing that play state, um, you know, which is absolutely amazing, isn't it, when we can find a way to access that. And, you know, for me, I you know, I'm so much more childish than I've ever been now. And I absolutely love that. Um, you know, and it's it's that kind of ability to play and to have fun that we often lose as adults. And I suppose as children grow up or they, you know, become more serious for whatever reason, also kind of lose some of that. And I suppose thinking back to my teenage years, you know, you you are under so much pressure that you do lose some of the sort of the silliness and the play because you're being told that you have to make life decisions, you know, which are stressful and not fun. Yeah, yeah.

Clare 40:17

But now I know, you know, if you're um enjoying yourself, that's the opposite of being scared. Um, and so your autonomic nervous system is in rest and relaxation, as opposed to your when I was telling him off that that's threatening his autonomic nervous system. So it would be sending him into fight or flight and and sending that cascade of hormones that uh switched his autonomic nervous system into a state that is not conducive to living a normal life.

Jackie Baxter 40:53

And I think, you know, cut coming back to how we were saying earlier about you know, it's hard enough recovering when you're an adult, um, but when you're a child, it's so important to have somebody who's able to support you but in the right way. And it sounds like, you know, you know, but by by being brilliant and supportive, but also with the play and this, you know, all of those things that you were doing, that you were really able to help him into a sort of a healing state rather than a sort of illness state. And um, yes, I I think this play state is so important for all of us. Um, but particularly, I think maybe in in younger people who maybe find it much harder to engage in go and do this breathing exercise or go and do this strategy or go and do this journaling exercise. You know, I can just imagine myself as a sort of 13-year-old just being like, you know, just absolutely not. Whereas putting that into a sort of a more playful activity, you're still doing the same thing, but you're doing it in a way that actually is gonna be accessible to someone who's younger.

Clare 42:06

And having to be positive around and all the time. And no matter how many times he left his clothes trailed all around the house, it's just uh suck it up, pick them up, and don't say anything because um that that would that just made things worse. So just keeping positive, keeping uh being encouraging, um, trying to jump on anything that was successful, um, that that helped him stay in the right sort of emotional state.

Jackie Baxter 42:35

Yeah, so celebrating all of those little teeny tiny wins again, isn't it? Yeah. Um now what I would be really interested in is you know, you you said that prior to becoming unwell, and and sort of for for most of his childhood, you know, he was getting sick all the time and you know, was experiencing some level of fatigue even before he became unwell, unwell. And how does that compare to how he is now? Is he better than he was before?

Clare 43:07

Yes, oh uh hugely. Um so at the moment he's working in a climbing center for about half the week and in um a place that rents out uh kayaks and cycles um the other half of the week. And he's when he's finished work, um, then he'll go and uh climb with his his friends for an hour and a half. So he he will be on his feet for eight to ten hour shift and and then go climbing. Last weekend he was uh went off to meet his university's friends, was parting all weekend and then came back home. So you know he's he's not limited at all.

Jackie Baxter 43:47

That's amazing.

Clare 43:48

Been off to Italy, traveling and working, and he's l living the the full life that anybody would would hope for.

Jackie Baxter 43:57

I mean, I always think the word normal is very insulting, but he just sounds like a wonderful, normal young person.

Clare 44:04

Yeah, yeah, he's great. Yeah. Well as weird and wacky as any other kid. Not that he's a kid, he's 23.

Jackie Baxter 44:12

He'll always be a kid to you. Um, so so I guess kind of finally, um, you know, you're now looking back on this with the benefit of hindsight from yourself. So what would you have wanted to know sort of back earlier on in this experience? And what I suppose maybe would he have wanted to know if you could answer that question for him?

University Flare, Boundaries, And Choice

Clare 44:41

What I would have wanted to know, um well, I would have wanted to know all the resources I know now to be able to go straight to those resources. Um, I probably still would have gone the NHS route. Well, definitely to begin with, to make sure that everything uh that was medically treatable could have been treatable. Um, but I would have taken it with a huge pinch of salt and any advice given by the NHS, because having worked in the NHS, it's working towards nice guidelines which I don't follow the uh the process that people who've recovered say was helpful for them. Um and even in the the trust that I work in when I talk to them about so what are your recovery rates um for for your patients? Um this is a couple of years ago, so might have changed now. They said, Well, we don't talk in terms of recovery, um we talk in terms of managing to live well with the condition. And I'm thinking that's so out of date. And uh when I saw patients, occasionally I saw patients with chronic fatigue, um, and I certainly was seeing the ones with long COVID, and I was doing the stuff that I knew works, um, I was told I wasn't to do any of those things. Because it didn't follow nice guidelines. And despite that, I I had emails from nearly all my patients saying this was the best thing that could have happened to them was seeing seeing me with the strict treatment that I was giving them. So I stopped seeing them because I couldn't follow the guidelines that I was allowed to follow because I knew it wasn't going to work. And it would just keep them stuck. Would help to a certain extent and then keep them stuck. So I didn't want to do that. So I would have loved to have known all the resources that that I know now to be able to get straight to it. So I wouldn't have false ideas of what to do. Perhaps um not pushed my son to have so many to try so many different things. I perhaps would sit back and wait until there was glimmers that he was interested in knowing rather than trying to push things at him because that just makes you want to put up a wall between you and um because it's just annoying other people telling you what to do with your life, no matter what age you are. You know, at two you just say, No, I'm not doing it, but you don't when you're uh a lovely um child like he was. Um they just ignore you. That's understandable. Um and I would have tried to lead more by example. So I was rushing around like a blue arse fly. Um so if I led a more calm, organized life, although I don't know how you do that when you're working full-time and you've got two children and visiting your parents in a care home because they both got dementia, you know, the normal life, um, as pressured as anybody else's is. Um, but you know, theoretically, I would have liked to have lived a more calm and organized life because that would have demonstrated it, and that would have helped to co-regulate um his emotional nervous system with my own. Um, whereas I was demonstrating how to get um these conditions with my own people pleasing and lack of boundaries and living a somewhat chaotic life, um rushing around and working too hard and not having enough balance. I taught him how to do it very well and and and he learned.

Jackie Baxter 48:36

Sounds like you have also through this experience helping him to recover. It sounds like you have gained a lot as well. I don't I don't know if that's the right way to put it.

Clare 48:52

Yeah, yeah, I've gained a lot of insight. Um and I I now understand myself more and and and um can address some of the things that I'm that would are not conducive to leading a good and happy life.

Jackie Baxter 49:11

Yeah, it's it's a brutal experience for the person going through it, but absolutely as as you just kind of demonstrated for those around them as well, it is a hell of a journey.

Clare 49:22

Yeah, it is, yeah.

Jackie Baxter 49:24

Claire, thank you so much for coming along and for sharing your story, your son's story, um, for sharing some hope for those who are still in their journey or for those who are supporting those still in their journey as well. Because it's it's not just the person who is ill who is affected by it. So thank you so much. Um, it's been absolutely delightful connecting with you. And I'm so pleased that he has his life back and that, you know, well, so do you. Yes. So thank you.

Clare 50:02

You're welcome.