ME/CFS & EDS bedbound for 8 years - Learning to Live Again

Lizzie Mooney (0:06): I felt like a monk in my own body. Everything was shut out. It had been eight years of being stuck in a bed. Riding my bike has been an image of freedom for all these years, people can't understand where I've been, but I think I did an okay job coping with it. I can tell my story, but only I can fully validate that for myself. It changed my life.

Emily Kate Stephens (0:41): Welcome to Make Visible, the podcast shining a light on complex chronic illness. I am your host Emily Kate Stephens. Welcome back to our latest episode, Gez. How are you?

Gez Medinger (1:01): I'm quite tired today at the moment for a few different reasons, but all of them chronic illness related, as is the way.

Emily Kate Stephens (1:10): Overdoing it a little bit, pushing it a little hard.

Gez Medinger (1:12): Well, yes, but well, so some of it's temperature. So I've just got back from a holiday in the south of France with family, and it was extremely hot. So it was 40 degrees during the day, 30 degrees at night. So you're really struggling to manage your body temperature during the day, and then you can't get the body temperature down enough at night to get deep sleep. So you're really carrying fatigue there. Families are complex things sometimes, especially if you've got complex chronic illness. So that is not necessarily a zero stress environment. I also had the temerity to go go karting whilst I was out there for 10 minutes, and I think I managed to crack a rib. So what that means, I don't mind the random pain, but what it means is that any time you're in bed and you try and move to one side or move at all in bed, you've got the worst pain

Emily Kate Stephens (1:59): That wakes you.

Gez Medinger (2:00): Yeah, so you don't again. You don't get deep sleep because you can never get comfortable. So I feel like I haven't slept properly in about two weeks, so I'm quite tired. But I'm hanging in there. How about you? How are you?

Emily Kate Stephens (2:09): Well, I feel like I've been building myself back up recently. After I had that back problem, I really reduced the amount of exercise I was doing. So I have been just trying to not push in a stupid way, but just push my body slightly further, so lift a little bit more weight to try and actually get a more diverse exercise regime because a lot of the time I walk and I do yoga, so I'm trying to mix that up a bit, and it's been going relatively well. I've been swimming in the the river Dart in the gorge and all sorts of fun. So this week we are bringing you an interview with two people. If sometimes you wonder how certain of the practitioners to whom we speak, who are very very conversant in these complex chronic illnesses, you imagine like me, sometimes will question how did they become so fluent in the conditions, or how did they become so experts? And one of these people is one of my favorite guests ever, Amy Mooney, who is an occupational therapist who not only helps people with complex chronic illness, but she goes around the world to educate practitioners, OTs, in how to help people. And this interview today with her and her daughter will go some way to explain how someone like her has developed such an empathetic understanding. Her daughter Lizzie Mooney. It is going to be her 21st birthday, the day after we put this episode out. And from the entire team at Visible, Lizzie, I would like to wish you the happiest 21st birthday, and tell you that I think anyone listening to your story will be so incredibly proud of you for getting to the point that you have got to today. Lizzie, you're sitting here today, upright, able to spend some time sitting and talking to us. Yep, but that has not been your situation over the past 11 years. Yeah, tell me from your perspective, in your own words, describe some of what happened to you.

Lizzie Mooney (4:37): Yeah, so it's been a difficult 11 years,

Emily Kate Stephens (4:40): and you are now.

Lizzie Mooney (4:41): I am 20. I'm 21. Yeah, I got sick when I was nine. Just it felt like all of a sudden. I remember the morning I woke up and I was like, "This isn't right. But I think I was kind of going down energy wise over the few months before. So it was a really difficult. I think it was about maybe a year before I got a diagnosis. In that year, it was why am I home? Why has it been two weeks and I'm not well yet? Surely I'll be fine in my fifth grade and and all these things. And it was a lot of not being believed, you know, thinking it was purely mental health and by doctors. And -

Emily Kate Stephens (5:18): Even at that age, even at an age where, as a kid, you would have thought that you're a kid who wants to play and be involved and be out and be active and be social. Yeah, and that that age you were.

Lizzie Mooney (5:33): Yeah, yeah. It was - are you depressed. Does she have anxiety? And all these things. And there was some question. There was some investigation into, like, we went to all sorts of doctors, and and none of them really had answers for me but, besides get her back in school, you know, here's a note to go back to school. And so it was just a lot of, is this real? Am I making things up to stay home or something like that?

Emily Kate Stephens (5:59): Did you start questioning yourself?

Lizzie Mooney (6:01): Oh yeah, yeah. And those questions would remain even years after diagnosis. It was just like, why is this happening to me? And anyway, after many months, after a year maybe of being sick and having no answers, we went to North Carolina or something. Took a plane and and went to a doctor that had a diagnosis for me, and and that really answered a lot of questions I had, but also started opening the world into well now now what

Amy Mooney (6:30): He kind of went here's the diagnosis, but we don't have anything for you.

Lizzie Mooney (6:32): Yeah here's a little step counter and then good luck.

Emily Kate Stephens (6:35): And what was the diagnosis?

Lizzie Mooney (6:37): It was ME, yeah.

Amy Mooney (6:38): And EDS

Lizzie Mooney (6:39): And EDS.

Amy Mooney (6:40): But we were like - she doesn't have EDS.

Emily Kate Stephens (6:41): At the same time, you got the the two.

Amy Mooney (6:45): He saw it. We didn't.

Lizzie Mooney (6:47): Yeah.

Amy Mooney (6:47): I mean, we didn't know exactly what it what it should look like, but the ME at least fit a picture.

Lizzie Mooney (6:53): Yeah.

Amy Mooney (6:53): And that we had already kind of known it. That's why we went to him.

Lizzie Mooney (6:56): Okay. Yeah. I don't remember a lot of that first year because it's kind of blurry, but

Amy Mooney (7:02): and you were nine,

Lizzie Mooney (7:03): and I was nine. In the first few months of getting sick, I was definitely stuck in bed. I improved a little bit. I was able to go to maybe 30 minutes, an hour of school over fifth grade a few times a month, and I'd come home and I'd be crashing and all these things. And I had a tutor at home, so it was just not a great educational experience. Besides my tutor, but then by the time I was in seventh grade, I became so severe that I could not leave bed or have my tutor. So I was about eleven or 12, and that's where I was for all of my teenage years, just in bed.

Emily Kate Stephens (7:38): How how how do you handle that as a child when you knew what life was like going into school and being with friends? How how did you handle any of that side of it?

Lizzie Mooney (7:53): Yeah,

Emily Kate Stephens (7:53): Everything that got taken away from you.

Lizzie Mooney (7:55): It was um, it was really confusing. I think the first year of being severe and bed bound, I was in such a detached space. I was dealing with so many symptoms that I just sort of could not fathom the world around me, and I didn't really have friends that would would come and bring in the world. And so I was kind of just like, well, this is where I have to be roughed. So, yeah,

Amy Mooney (8:23): And you also then kind of opened, even though people locally were very very supportive, they didn't know what it felt like to have this type of illness. So there wasn't a a mutual understanding. It was just sympathy.

Lizzie Mooney (8:40): Yeah,

Amy Mooney (8:41): And you know, can we distract you? Can we come over and distract you, type of thing? And she didn't have that capacity to have social interactions. Yeah, exactly. So you did reach out and found international friends.

Lizzie Mooney (8:53): In 2020 I made my first international friends.

Emily Kate Stephens (8:55): With other people understanding? This was a couple years after getting severe, so I was able to be online a little bit. I made friends in England and in

Amy Mooney (9:03): With children. Finland and Australia with other people

Lizzie Mooney (9:08): With other young adults with Emily. I was usually the youngest by a couple years, but I was very supported in group chats and one-on-one.

Emily Kate Stephens (9:16): How about what it was like as a parent to know what your child should have been experiencing during that time, aside from your own grief and pain of what you were having to go through, how was it?

Amy Mooney (9:35): We tried to keep things normal as a family. I mean, it's really, really hard, and there's a whole lot of dysfunction, and Lizzie is the middle child, so there was a lot of seeing her brother do things that was very was you were angry and you were seeing a lot of his growth, and then you were seeing your younger sibling grow -

Lizzie Mooney (9:58): Hit the milestones that I didn't get to.

Amy Mooney (10:00): So those those

Lizzie Mooney (10:01): are difficult

Amy Mooney (10:02): Those were traumatic of, and I think that's a different type of of grieving that children with this pediatric ME and Long Covid with post exertional malaise experience is that it's the grief of losing your potential and not necessarily... I mean, adults lose so much of what they were, but for kids, it's what could you have been? What were your dreams? And that piece of it, Lizzie stopped at nine of creating those dreams, and and riding your bike and doing things. And sorry, but but I think it's the piece that that gets overlooked that it's not necessarily focused on for kids that we still have to really help them come up with what your interests are. Yeah. So that's where we focused a lot of our attention is just trying to make things as normal as possible and still like you can do anything you want in your life. It's just that education will be slightly delayed, meeting those milestones of graduation. So what if it's a couple years delayed? Or let's look at you know what other things could happen, or not, or maybe maybe different goals are in sight, so figuring out like Lizzie has so many skills. She's a master seamstress and knitter and guitar player, so it's kind of focusing on other interests.

Emily Kate Stephens (11:32): Some of those things are often things that people are encouraged to to do if you can do activities that are mindful but not cognitively exerting, but I would have thought that maybe guitar out of those is quite a lot for your system to handle, both in terms of the sound and in terms of the cognitive load. Talk to me about the things that you chose to do, presumably during that very severe stage, and you ended up when you say bed bound, it wasn't that you were in bed most of the time and then would get up and do things occasionally. You had to be horizontal.

Lizzie Mooney (12:16): Yeah, for it was so. I was bed bound for eight years. Four of those years, I was maybe able to stand transfer to get to the commode and and those things. But when my jugulars were completely compromised, it was four years of completely flat. Could not raise my head above at all, like above my hips whatsoever.

Emily Kate Stephens (12:38): What would happen?

Lizzie Mooney (12:39): My pain would become.... I've I've had chronic head pain all this time, but it became positional when my when my vascular system sort of compressed even more, and so I would just explode into pain and and be stuck in a horrific pain cycle for weeks on end if I raised my head above my hips. Yeah.

Emily Kate Stephens (12:59): So during that period, was even raising your hand was that okay, or were you able to do any kind of activities during that time?

Lizzie Mooney (13:08): Yeah. So the first four years of bed bound, I was like, I couldn't do any hobbies. The most I could do was sometimes text my friends, but as soon as I was locked like flat. I had some surgeries that I had a cranial cervical fusion, and that made my jugulars worse, but made me crash much less. And I was just at a better baseline, I think, when I was flat. So in those four years, I started to improve with my auditory and my sight and all that stuff was able to text for longer. But anyway, yeah, I developed hobbies in that time. I was able to raise my hands and do a lot while being completely glued to bed. I think it was three or four years ago I started playing bass while bed bound, and so, so I had it, you know, on my on my belly, and I had a little supporting thing holding it up, and I would just play in bed. And the same thing with a sewing machine; I put it on a lap desk over me and just sort of sew with my with my feeling. Yeah. So I, with that extra energy, I was able to do a lot. Still stuck in bed, and still there's only so much you can do, even with adaptions. It's difficult. It's a difficult life. Yeah,

Emily Kate Stephens (14:23): It's incredible to hear you talk about that, and then see you sitting here today in a very EDS posture. Yeah, talk to me about how it feels to just be in your body, but now that you are able to move around.

Lizzie Mooney (14:45): Yeah. So I started being able to sit up again after any surgeries. So in 2023, I think it was, I was rolled out of bed, taken onto my family. We had bought a stretcher, put that stretcher in the back of a van, and drove me 15 hours to North Carolina for a vascular surgeon, and he diagnosed me with very severe jugular stenosis, and so that was kind of a reason for the pain. Finally, we went all those years without any reason for my pain, and so after that we went back home, and then

Emily Kate Stephens (15:26): he diagnosed you, but you didn't have anything. That there's nothing that you could do.

Amy Mooney (15:31): Yeah, he had a plan. Yeah, but he wasn't the first person on the list. So it was here's the diagnosis, but I don't do this first step,

Lizzie Mooney (15:41): Yeah, and so some months of hellish recovery later from that that diagnosis trip, we did the same thing. Put me in the back of a van on my stretcher and drove more than 17 hours out to Denver, Colorado, and that's where I had my what is decompression surgeries, or one of them,

Emily Kate Stephens (16:03): And just to to sort of explain that, Amy, or I don't know, Lizzie, if you want to explain it, what the reason for the compression is due to the EDS or due to floppy vasculature.

Amy Mooney (16:20): So it's we we don't know exactly all of the pieces, but because of connective tissue vulnerability in the tissues, the veins can be floppier. The structure isn't as it's almost like a wet straw versus a plastic straw, and that tissue kind of softens or changes, but also Lizzie had chronic inflammation that laid down possibly scar tissue around the outside of the vein, so it was kind of squeezing it, which we didn't know was there, and it's not able to be picked up on imaging. That that was also kind of suffocating that that structure, and so that was squeezing. So what the surgery was was to go and kind of clean up that outside of the vein, take away the scar tissue, take away some lymph nodes, take away the styloid bone, which is Eagle syndrome. If the styloid is pushing into that vein, it's called Eagle syndrome. Well, she didn't necessarily have the classic Eagle syndrome, so he just took the bone anyways, just to open up that space. So now she had the outside open, but the vein still was floppy. But he wanted to make sure that it was open and live with that for a little while, and maybe maybe that was enough, and so we went back home after that surgery to recover, and it wasn't exactly

Emily Kate Stephens (17:48): again 17 hours driving.

Amy Mooney (17:50): Yep, straight through in the back of the van on a stretcher, came back home and waited for a couple of months to see how the symptoms would change, and it wasn't changing. And so then we went back to the original guy in North Carolina, and that's where the stents were put in, and that opened it, and that was good. So that opened the one side, but didn't get you upright yet.

Lizzie Mooney (18:12): It did in April 2024, I think the first jugular was done. That's when I started to sit up.

Emily Kate Stephens (18:23): So having one side done was so you said there that the tissues were suffocating the vein, and essentially that is what was happening to your brain. Is that right? That's right. When you tried to sit up -

Amy Mooney (18:39): The blood in the brain wasn't able to drain, so it's almost like when you're upright, the the you know the it squeezes, and we want in a in a healthy body we want those veins to close a little bit, because otherwise all the blood leaves our head, and so when she was upright it was squeezing too much, and so that was almost like a balloon being overinflated, and so that's what she was feeling was that pressure. Her eyes bulging, you know, you wanted to push everything back in.

Lizzie Mooney (19:09): Yeah,

Amy Mooney (19:09): - is because the the the pressure was intracranial hypertension, and then when she would lay down, then it would it would relax, it would soften a little bit with that pressure, but she was already under severe, severe pressure, just even flat.

Lizzie Mooney (19:26): Yeah, and so just by opening that vein and letting the blood flow, at least she had some release valve that the pain or the pressure could release, and then she would have a little bit less pain. Yeah. So that that first spring summer after the first jugular was done, but not the second, it changed my life. Even though I was still pretty pretty horizontal, I couldn't do a lot of things. But I started sitting up again, and I started being able to do transfers into a chair and into a wheelchair, maybe. And I don't think I left the house too much after that in a few months, but once October hit and I got my second jugular decompressed to Denver, back to Denver, and then North Carolina, and once I got both of them done, it was really revolutionary. And here I've been in the past year and a

Amy Mooney (20:19): Yeah, year and half. half.

Lizzie Mooney (20:21): Walking again and relearned to walk and outings again. You know, it had been eight years of being stuck in a bed, so relearning the world and social interactions and enjoying nature again and all those things. Yeah,

Emily Kate Stephens (20:39): Wow.

Amy Mooney (20:40): You spend a lot of time when you were in isolation, rest and everything, visualizing like what driving down the road felt like. You would go on mental trips, wouldn't you? Yeah, you would visualize going downtown, our our little village, and going different places.

Lizzie Mooney (21:01): It was important to me that I didn't forget the outside world and what it felt like to ride my bike to school. Riding my bike has been an image of freedom for all these years, so it was important that I didn't forget the street names and the the ways to get around. And I ended up maybe a year before I became unbed bound. I would do VR tours of places like people riding a bike or something, and I just do it laid back in bed and have the screen there, and really enjoy taking tours around the world.

Emily Kate Stephens (21:32): Wow!

Lizzie Mooney (21:33): Yeah.

Amy Mooney (21:34): So she has this - you know Amsterdam really well.

Lizzie Mooney (21:37): I do know Amsterdam very well. So if she ever goes to Amsterdam, it's going to be like déjà vu.

Emily Kate Stephens (21:43): What you were unable to have and what you were unable to do is absolutely huge. But with the modern world, were you actually able to keep in touch with some of those things, with VR, with watching TV movies? Do you feel like you were able to keep some of yourself outside of the world, see some of the outside.

Lizzie Mooney (22:07): Yes and no. The first few years of being bed bound, when I was 11, those years I was so I felt like a monk in my own body. It was kind of just everything was shut out. I was just the only thing that mattered was my body right now, right then, and then as as my abilities opened up a little bit more, as I got more energy, then it mattered to me more to stay connected. And

Emily Kate Stephens (22:32): So after the period when you came, when you were able to start relearning to walk, start maybe I don't know taking a trip in the car was that a really alien experience, or do you feel like you had managed to keep up with some of the outside world?

Lizzie Mooney (22:51): I tried my best to like pretend that it wasn't huge because it was a really scary experience getting back into the world and seeing how things had changed, and these are not the songs that I, on the radio that I left. You know, many years have passed, and so it was really difficult to be confronted with the time that had been passed. But I think I did an okay job coping with it. It was definitely like you know I have I have had PTSD for many years, and this was a traumatic experience understanding what I had lost in time. But I think I think I adjusted to it okay. The novelty was there for a little bit, and then it kind of wore off. And I'm like, okay, here I am. I'm maybe not a full part of the world yet, but as time goes on, I'm more integrated into -

Emily Kate Stephens (23:39): Moving towards. Yeah, you mentioned that you had met people online. How do you go about reintegrating yourself into some kind of social circle with your peers when you've had that absence? When these people have done those milestones that you mentioned together, how do you even begin to start rebuilding that?

Lizzie Mooney (24:06): Yeah, so I I still keep in in close touch with my online friends. Some of them are slipper bound as well, so they're kind of my home base, who I go to when I'm home and I'm I'm processing things and I'm you know, wanting deep conversations, but it was really difficult having finding people that are that are have not experienced EMI and the world of of severe chronic illness. It's very difficult to have anyone understand that, and that really stressed me out when I was bed bound. I was like, "How would if I ever get better? How would I ever relate to anyone on the outside? And as time has gone on, month by month, it's kind of gotten easier to relate to people. And I've, I've, you know, had my friend who lives in town who has Emily, and she's been huge for me because she's been more in the outside world than I have been, and so she's introduced me to friends, and then I met my partner year and some months ago, and his family has been so welcoming, and so I've met friends through them, and so you know it's it's kind of a grabbing on to whoever you can and seeing what connections are there. It's really exciting, but it's also been disappointing in ways that people can't understand where I've been and can tell my story, but only I can really fully validate that for myself.

Emily Kate Stephens (25:33): Would you say that now you are able to live a relatively independent life in terms of are you able to? I'm not talking about necessarily driving yourself everywhere and going out and working, but are you able to function day to day with basic daily needs alone, or are you still very reliant on help?

Lizzie Mooney (26:03): I am somewhat reliant on help. For example, I need my meals to to be prepared for me, and but for like grooming, I can take a shower pretty much whenever I want to, and and that's I mean that's that's huge, huge, yeah, yeah, yeah. I can get my meds ready for bed. I don't need. I don't need a ton of assistance, but I do need the setup. I need the setup. I need to have someone drive me places and maybe look out for me. I'm not, you know, the most like I can walk decently far, maybe a block or so, maybe not quite a couple stores down, and I can explore things on my own. But I'll need, you know, help getting back to the car. And

Amy Mooney (26:47): You have a chair.

Lizzie Mooney (26:47): I have a wheelchair. I have a power chair that is very helpful that I use a lot of the times when I'm out.

Emily Kate Stephens (26:54): That gives you a degree more independent.

Lizzie Mooney (26:56): Yes. Yep. Yep. It's a.

Amy Mooney (26:59): You took Uber for the first time by yourself.

Lizzie Mooney (27:01): I took an Uber two towns over, just just

Amy Mooney (27:04): just to try it out, just to see

Emily Kate Stephens (27:06): That kind of coming back into the world. That must just start to be terrifying.

Lizzie Mooney (27:10): Yeah, yeah. I mean, this is also kind of recent that I took the Uber.

Amy Mooney (27:13): Yeah, we planned it.

Lizzie Mooney (27:14): We planned it ahead of time and had the whole day later to rest, and so yeah,

Amy Mooney (27:21): Just to be able to go to a coffee shop and sit by yourself.

Lizzie Mooney (27:24): Yeah, to be driven by friends, places, and my partner places is really, really a huge step in autonomy and stuff. So,

Emily Kate Stephens (27:33): Amy, how do you feel now that you sit here?

Amy Mooney (27:36): Oh, she is. She has moved mountains to get to this level, so I think that she is very aware of what her needs are, and she advocates for herself. You know, she she'll tell you exactly what she needs, where it needs to be put, and that's good. I want her to do that, yeah, because she she does she needs help, and but I I just need for her to know that she can rely on other people besides just me, and that I think was very freeing. When because for a long, long time it was only me. Yeah, and and you felt trapped. If something happened to me, what would you do? Yeah, and then that's where now you're you're feeling like okay, I've got a little bit more control over.

Lizzie Mooney (28:20): I've got more of a community to rely on in the in the outside world. I have people who can take me places. I have,

Amy Mooney (28:27): Yeah, and and you've also taken more control over your conversations with doctors. Yeah, just by having more her own portal access to message.

Lizzie Mooney (28:37): By having more energy, I've been able to care for myself a lot better, yeah.

Amy Mooney (28:42): I mean, this is a priority for you, right?

Lizzie Mooney (28:44): Yeah,

Emily Kate Stephens (28:45): For you to be able to advocate and look after yourself.

Amy Mooney (28:49): Some people don't, and that's fine. They don't need to. I mean, trust me, my other kids probably don't, you know. But for her, for her personality, she wants it. So it's sort of it's a growth.

Emily Kate Stephens (29:04): I don't know, Lizzy, if you feel like you can answer this or say this when you're switching notes to your mom. But how do you feel about the relationships that you've had within your family through this? How have you felt towards your siblings and towards your parents in terms of them having to help you, you needing them to help you, but that obviously changing the relationship that you should have should have had or another child would have had with their parents through those teenage years.

Lizzie Mooney (29:40): It's been difficult having similar relationships with my younger sister and my older brother. My brother became a caretaker for me, caregiver for me, in in ways when we were doing the travel. So relying on on him and then my little sister, who you know is living a very I don't know. Fun life, fun teenager life right now, driving and stuff like that. That's still difficult to see, all these years later. But I think it was the losing relatability in my siblings was very difficult for me, and was pretty immediate as a nine-year-old.

Emily Kate Stephens (30:16): Because up until that point, you'd just been playing with your siblings.

Lizzie Mooney (30:19): I had been an equal to them, and I then yeah, I could run just as fast as my brother and all those things. So that there was a lot of anger and and annoyance at them for many years. When I became bed bound, that didn't that wasn't front of mind because I wasn't seeing them do those things. You know, I was in my own bed. I wasn't seeing them run outside, so I didn't miss it in the same way. But when it was graduation season or birthday season, that was very difficult. But now that I'm an adult and also doing better with my health, I can actually focus on my relationships with them, and I enjoy I enjoy my siblings now so you know it's I mean it's not without difficulty I still have big feelings about comparisons in their life and mine and all that stuff but yeah I I actually enjoy presence and my parents it changed quite a bit because I was a pretty independent kid I as soon as I could ride my bike to school, if the weather was allowing it, you would not be driving me to school. So it was from super independent to very anxious about where my mom is all the time and needing her help and yeah, just very dependent and it could only be her because she knew the ways to do things, and and my grandma did a little bit, and my dad did a little bit, but it was just you know total reliance on my mom, and so she couldn't leave the house. She was kind of housebound in a way too. But as when I started improving, I think that's when our relationship became a little bit more separate, less codependent, and so now I think it's a more normal relationship. I come to her when I want to talk to her, and I tell her things I want her to know rather than her just knowing everything. So,

Emily Kate Stephens (32:14): Amy, how is that being you? Because that's a big shift as well. That I know that you never wanted to have to be sick, but the reliance on you is a relationship in itself. There's a change and a grief that comes with that kind of change. How is it for you to go through that transition?

Amy Mooney (32:37): You know, it's it's it was very difficult to have to be that relied upon. It was definitely an intense experience. I wouldn't. I'm. I'm so honored to be that person because just to be able to to be that important in somebody's life, that it was was really. I felt that need, but it was also very scary because I really wanted to make sure that other people could still care for her, so that she could still get her needs met, and that I wasn't the only person in her life. I mean, we have we have family that is around, so that piece of it was kind of a pull of trying to figure out how how much do I let her rely on me, and how much do I push back and have her ask somebody else for that help? So that was it. Was difficult. Yeah. So I just didn't want her to suffer. Yeah. But as things have changed, and her her health has improved. I mean, it's just I'm so proud of how hard she's worked, and she's she's made things happen for herself. She still has pain. She still, you still have a lot of pain. But I think she knows how to to manage it a little bit better. And it's stuff that I I can leave the house and I can go away for a couple of days, and I know that she's able to take care of herself.

Lizzie Mooney (33:59): Yeah, I think yeah. When I was pretty severe, it was the energy of having a different caregiver was like having to

Emily Kate Stephens (34:11): Because of that idea that you might have to instruct them, and you just didn't have the capacity?

Lizzie Mooney (34:16): Yeah,

Emily Kate Stephens (34:17): You needed mom that knew exactly what you needed without you having to -

Lizzie Mooney (34:22): Or someone else feeding me food is like, you know, I the pace is just different. They're not doing it at the same pace as my usual caregiver.

Amy Mooney (34:31): Or your socks are just twisted enough. Yeah, you just have to then mess.

Lizzie Mooney (34:35): It's just all these sensory things that are so difficult to deal with, yeah.

Emily Kate Stephens (34:41): When you have been through what you have been through, how do you even start to position your hope for the future? Can you tell me what you are looking towards, what you are hoping to move towards, be it how you hope your body feels, or be it the kind of dreams and aspirations that a 20-year-old might have.

Lizzie Mooney (35:13): That's a tricky one because when I was so sick, it was kind of like, okay, these are the the set dreams that I was supposed to have: graduate high school, go on to college. And as time went on, and I passed those those timelines, those kind of became irrelevant. And so I didn't have a lot of big dreams, like what like clear dreams, what school would look like or what a job would look like. So I'm kind of as I'm improving, I'm kind of left with okay. I have so much possibility that is kind of overwhelming, and so I'm taking it day by day. But I'm definitely education, higher education. I don't even know in what direction I want to go, but I want to explore a lot of things. But most of all, my dreams have been how I want to feel in my body, which is with a lot less pain, no pain maybe that would be crazy, and more energy, more stamina to to be out in the world and doing things. I recently have been riding a bike.

Emily Kate Stephens (36:19): Oh, my god! I was gonna ask you. Yeah, that was a dream of yours.

Lizzie Mooney (36:24): Yeah,

Emily Kate Stephens (36:25): that's amazing.

Lizzie Mooney (36:26): So that was always VR, you know, riding a bike, and I remember how it would feel, and wouldn't it feel great? And so this spring, I've been doing that again. We got an e-bike. Wow! So I've been, you know, going around the neighborhood a little bit. So that's been big, just to feel more secure in my body and safe, and and reassure myself that I'm not going back. Like I'm feeling stronger, and that if I do this, that I won't. It's not the same as it was eight years ago. I won't be put back in bed the same way. So I think future hopes, security, safety in my body and in my mind, and like hope that I that I can, you know, I'm capable of these things, and I'm capable of education and a job and social life and all these things.

Amy Mooney (37:15): Yeah, and you are volunteering.

Lizzie Mooney (37:16): I'm volunteering at a yarn shop.

Amy Mooney (37:18): So she goes, and helps people learn knitting, if they're they're stuck with their knitting projects.

Lizzie Mooney (37:23): Works the register yeah.

Emily Kate Stephens (37:27): Wow.

Amy Mooney (37:27): Little things just a couple hours and things that you don't if you're not feeling well you can just call in to say I'm not coming in

Lizzie Mooney (37:34): Yep.

Amy Mooney (37:35): Flexibility.

Emily Kate Stephens (37:37): From your perspective that those things must feel like huge milestones from where you've seen your daughter. What is your hope for the coming months? Coming years?

Amy Mooney (37:52): I think just focusing in on the things that make her happy, because she has spent so much time trying to find happiness and trying to find things in such a narrow focus of what in my room would make me feel happy. What in my living room and this immediate space would help me? You know, how can I distract myself? What can I watch or talk to somebody that would make me feel some sort of happiness, or or at least contentment, and now I just want her to keep expanding that, so that she finds things in her community or in in her interest fields, and just keep broadening that out. And I think that's where we've been able to do that very very slowly, but it's it's getting there.

Lizzie Mooney (38:43): Yeah.

Emily Kate Stephens (38:45): What would be your advice to another teenager or young person who's trying to navigate this sort of situation? And that advice can be anything from make sure you've got yourself a mum who's an OT who goes around the world and tries to educate herself as much as possible on the possibilities to things that have been absolutely instrumental to you maintaining some kind of sense of self?

Lizzie Mooney (39:21): My first thought is online friends - could could be with similar illnesses, or it could just be people who like music and want to share different things. Also, I think it's just contentment is really huge. I think crafting has been really big for me, and so I would suggest whatever. watch a YouTube video, if you are able to of someone doing something with their hands, and if you if you can't do that with yourself, you know, find find something something tactile is always nice, even if it's a weighted blanket or something like that. Yep, find people, find tactile things that keep you in the moment.

Amy Mooney (40:06): The bass gives you that deep input into the body, like that feedback. I think that's why she chose the bass.

Emily Kate Stephens (40:14): Oh, do you think that actual reverberation of it?

Lizzie Mooney (40:18): Yeah, yeah. I mean, I always paid attention to that in songs, but now I like I can do I can replicate that. So,

Emily Kate Stephens (40:24): so there's something soothes your nervous system.

Lizzie Mooney (40:28): Yeah, something that soothes your nervous system.

Emily Kate Stephens (40:30): Again, it's finding a sensory, and in that case, it's auditory a sensory input. So you said the weighted blanket, the textiles. There's something about bringing you back to your body, even though that's a vessel that half the time or the majority of the time is so frustrating and is almost feeling like your enemy. These are techniques to bring you back into your body.

Lizzie Mooney (40:56): Yeah, I mean, just finding a little safe spot in your own body and your mind. I always used to say, my hands were what most felt like me, because they were able to do. They had the energy at times to knit and to sew and all these things. And I could look at them and be like, okay, that's me. Even if the rest of me did not feel like a safe place for me. Yeah,

Emily Kate Stephens (41:21): Lizzie, is there anything else that you would like to share with me, to share people, to share with someone else that is going through this about your story, or about a piece of acknowledgement or anything for people within the community, were there any mottos that you had or any thoughts that you had that really kept you going or helped you through the awful bits?

Lizzie Mooney (41:59): I think searching for contentment has always been the biggest, like I don't don't need to be pain free this second to find contentment in myself and peace in myself. I can exist with these symptoms and still be a whole person and still feel like a new version of myself.

Emily Kate Stephens (42:22): Is that an acceptance?

Lizzie Mooney (42:24): The acceptance, yeah, yeah.

Emily Kate Stephens (42:26): Not an acceptance that this is the way it's got to be, but of you.

Lizzie Mooney (42:30): Yeah, yeah. Of just sitting with yourself and being okay with it, and that takes a lot of of time and effort to just have neutrality. But I think it's it's the biggest thing in my life right now that's keeping me whole. A favorite phrase of mine when I was very sick was always, "It's never so bad that it can't get worse. So just just yeah, please be grateful of what you have now, you don't have to be, but it's kind of like it is what it is right now.

Emily Kate Stephens (43:11): Amazing! Thank you so much, both of you, for talking to me today. Yep, thank you. A pleasure. What are your thoughts listening to Lizzie's story?

Gez Medinger (43:28): It's incredibly moving. We may all think we've had a rough ride. Those of us who have been significantly further up the Bell MECFS scale than Lizzie, but when you hear the story from someone who's been bed bound for that long, and at that stage in their life, my God, does it reframe things again? Yes, I'm a fraction of the person I used to be, and the people who surround me now. And so you perpetually compare yourself to them, but we don't tend to accept and sort of feel as grateful as we could what we still have compared to what others who suffer with complex chronic illness and how severe they can be, and just how restrictive their life is. Listening to that interview, I just had the hugest amount of empathy for for Lizzie and for Amy for having gone through this every single part of that process, watching your siblings hit the milestones that you never get to as you're growing up. Your entire teenage years being spent in bed. It's hard enough dealing with even mild to moderate ME/CFS as an adult, but that degree of severity as a kid. How can you ever be equipped to have the emotional resilience and maturity to deal with it? And I think one of the most amazing things is how intelligently and eloquently Lizzie talks about it. You wouldn't have guessed that she hasn't been to school since the age of nine or 10. Wow, what an incredible story! So many thoughts. So it was so tougher, and I was so happy to hear that she was able to even have an hour's conversation with you, sitting up, because that would have been unthinkable a few years ago.

Emily Kate Stephens (44:58): One thing that I wanted to caveat: I want to highlight the fact that Lizzie's move towards a more stable and functional place is an entirely unique and personal story, and I really don't want anyone to listen to this and suddenly go to their doctors and tell them I need to go and have this operation. What happened with Lizzie will not be the answer for everyone else. It is a completely personal journey to navigate, and I would love it if people can look at this and take hope. There are ways in which you can actually discover potential treatments or potential things that can help alleviate some of your symptoms. But that is not to say everyone with ME/CFS or EDS can go and demand these things that Lizzie had. I wanted to leave in a certain amount of the detail because I do think this idea of this floppy vasculature in EDS is something that is very important and is something that could be a consideration for many people. And I know that a lot of people with these conditions will see their healthcare practitioner, and that practitioner doesn't necessarily have experience of this condition or the potential routes to some of the symptoms, so I just wanted to highlight that that is very, very much Lizzie's personal situation and not something that is going to be a universal fit.

Gez Medinger (46:31): If anyone's interested, I did a video about craniocervical instability that's on my YouTube channel. So if you think some of Lizzie's story might apply to you, there's a lot more information than an interview we did there, which might just give you a bit more understanding about where that fits into EDS and fits into POPS and you know everything else. It is it is a small subset of those suffering with ME/CFS. If you have EDS, it might be worth looking into.

Emily Kate Stephens (46:55): But it's actually a huge area for research, and I know that the Complex Disorders Alliance has actually just set up an entire cranial instability program to research it because it might actually be more prevalent within these conditions. But it needs it needs research.

Gez Medinger (47:13): Completely agree. So rather than talking about the unique stuff of that interview, I want to talk about something that I think is much more applicable to everybody listening if they suffer with complex chronic illness or specifically ME/CFS, and that is something that Lizzie said about how some local people were incredibly supportive but didn't have any understanding, and that is to say, even the people who do have sympathy and empathy for you, the good ones-that is, the people who really do take an interest and are curious and do believe you. They still don't get it, and they can't get it because the experience itself is so alien to normal, healthy people who may have had the flu or broken a leg or normal people type problems, health problems in their life. That there's no frame of reference for them to understand what it's like, you know, the comment that Lizzie made about how the idea that the only safe part of her deep was her hands-how can you understand that? I couldn't have understood that before -

Emily Kate Stephens (48:11): If you just have a body that operates for you the way it's -

Gez Medinger (48:14): - supposed to -

Emily Kate Stephens (48:15): - always done the way it's supposed to -

Gez Medinger (48:17): Yeah, and when you can't trust your body and the way it functions and its reactions to things. The impact of that is so deep and so fundamental on a psychological and emotional level, as well as the obvious physical one. That's where it's so hard to get support, especially from physicians who haven't taken a really deep interest in conditions like this, because medical literature doesn't cover that. There isn't a chapter in your medical degree textbook on really being able to trust your hands,

Emily Kate Stephens (48:45): And yet a 21-year-old, 20 now 21-year-old is sitting there saying that her hope for the future is safety and security in her own body.

Gez Medinger (48:55): Quite profound, isn't it?

Emily Kate Stephens (48:59): I'm finding this incredibly emotional. I managed to keep it together the whole time I was sitting there interviewing her. In hindsight, I I just find it remarkable what she has gone through, and like you said, to still be able to approach it with this maturity and this philosophical outlook towards it. The comment that you made, just to be grateful now, when she said that when she first, I think, took a car ride after she was able to move, and she said the songs on the radio weren't the same as the world I'd left, and it reminded me of a hostage situation where people come out of a hostage situation five years, 10 years after they've been completely removed from the world, and that reintegration into society. And I thought, well, that's essentially what happened. She was taken hostage, looked into her body for that time, and I think she did incredibly well to try and expand her mind and her experience through the sort of VR and things like that that she accessed, but that idea of that must just be so traumatic to come and find a different world.

Gez Medinger (50:09): Do you know the Mel Gibson movie Forever Young, Emily?

Emily Kate Stephens (50:12): I think I've seen this. This is quite an old one, isn't it?

Gez Medinger (50:14): It's from the 90s. He's a World War Two pilot who somehow wakes up. Is he a World War Two pilot? This man wakes up in the present day and suddenly realizes that 50 years have gone past and he's out of place, out of date. I haven't haven't had a pop culture reference in a few episodes, so I thought I had to squeeze one in whilst we're on the topic of coming out of deep hibernation. Whilst on that front, particularly the image that she clung to of what freedom and health looked and felt like, which was just riding a bike and actually being able to get back on that bike and actually being able to feel those sensations again and thank God for e-bikes. I get a bad press, but if you've got complex chronic illness, they're the best thing in the world. I have one.

Emily Kate Stephens (50:53): That image of freedom of her just being able to get on that. I I found it very hard to keep it together while she said that I was so delighted for her, and so delighted for Amy as well, because she really does do so much to try and educate the community. And it was only through sitting with her and her daughter, and them explaining together quite the extent of what she had had to do to care for her daughter through such seminal years of her life, I already had utmost respect for her. But honestly, I was blown away by them. Really, me too. Thank you so much for having this conversation with me. I'm sorry I got so emotional over it. Yeah, an absolute pleasure. Thank you. Thank you for listening to Make Visible. Please do like, follow, or subscribe to listen to our next episode, where we'll be uncovering more insights into complex chronic illness. This was brought to you by the team at Visible, a group of scientists and engineers whose lives have been affected by energy-limiting health conditions. We're building wearable energy that's helping 100,000 people measure and manage their complex chronic illness. To find out more about what we're working on and how Visible could help you, visit our website at makevisible.com.