Hi everyone! So many of my guests say that acceptance was the starting place of their recovery and oftentimes this is something that is overlooked or even completely dismissed because it's too simple. But there is nothing simple or trivial about accepting being bedridden while being given a prognosis of no hope for recovery.
So how do you build from there, from that place? Right now, in this interview, we're going to hear from my incredible guest and hear how she did just that. Hi everyone, I'm Raelynn. On this channel, you'll find over 170 inspiring recovery stories from conditions like ME-CFS and long COVID, with all of these stories contributing to a recovery stories research study currently being conducted by Goldsmiths at University of London to help shed light on how people come back to health. Today, my guest is Kim Nordstrom over near Stockholm, Sweden.
Her journey with ME-CFS began after a lifetime of stress, and she reached a breaking point while training for a half marathon. And at one point, she got to a place where she was bedridden, and it was here she was diagnosed by an ME-CFS specialist and given a prognosis of no hope for recovery. But Kim chose to...
fight for her life, determined to be there for her kids, and today she is 100% recovered and eager to share the most important things she learned and to help inspire others to keep going and searching for your puzzle pieces too. Kim, so great to have you here. Thank you for being here today. So wow, you have had a rough journey with this, so I don't know where you want to start, but take us back to how this began for you.
Yeah, I got sick six years ago, but I did have some problems the years before that with a lot of fatigue. And I just thought that was because I had two small children. So I didn't really pay attention to that in the beginning of 2015. That was when it started.
But in 2018, in the summer, I was running a lot because I wanted to run the half marathon here in Stockholm. And one day when I was out running, I just... It felt like I was running in jelly and it was really uncomfortable. And it felt, my whole body felt like I couldn't produce enough energy to continue running. So I thought, okay, I will just, you know, rest a couple of more days in between my sessions.
And I tried to run again and it didn't work. So after a while, I realized that something was really seriously wrong with me. So I went to the doctor.
course. And to make a long story short, I went to the doctors and specialists and I took a lot of samples and I did a lot of exams for one and a half year and no one could find out what was wrong with me. And they gave me antidepressants and they gave me all this medicine and stuff and nothing helped. So in the end, I ended up at the ME clinic here in Stockholm.
That was the only ME clinic in Stockholm, in Sweden at that time. time. And yeah, they gave me the diagnosis after 18 months.
And here in Sweden, we have to fit into the Canada criteria. And I had all the symptoms on the list. So at that time, I was really, really bad. And I had tried to work for the last year and I was just sick all the time. And I couldn't do my job and I lost my brain.
brain functions. I got a lot of brain fog and I lost words and I just couldn't function. And I got more and more tired and more and more out of energy. I just didn't have any energy in my body.
So whatever I did, I really tried everything because I worked in the healthcare for 20 years before I got sick. So I thought, you know, my knowledge and what I knew about the body and how you take care of yourself, I thought that was going to be enough. But it wasn't. So I got the diagnosis.
And before that, I never heard of ME. I didn't even know what it was. And so I had to learn all these things about this disease. And it was so heartbreaking because every place I came to to find information, they were so negative. Everything was like, yeah, you're going to have this disease for the rest of your life and you cannot get well, you cannot recover.
It's only 5% and mostly it's young people or, you know, people who only had it for a short while. So I was very, I was very sad at that time. I tried to find solutions outside of myself. I went to the doctors and I asked for help and no one could help me. And I started looking at research articles and, you know, modern medicine and everything.
And I couldn't find any solutions or answers out there. And the ME clinic, they asked me to do work ability investigation. And that was like one hour of just... easy movements and walking in the hallway and lifting some stuff from one shelf to another.
And that was one hour. And after that, in the taxi on the way home, I totally collapsed. And that's when I became my worst. I was severely, severely sick for two months.
I was in a dark room. I had earplugs. I had...
a face mask. I had no light, no sound. I couldn't see my kids. They were five and seven at that time.
I couldn't take care of myself. I couldn't drink or eat. It was horrible.
I had a lot of symptoms and I had a headache from hell. I cannot even explain how that felt. And during that time, I had an 11-day long period where I had a headache. Any person in the world would go to the doctor with that headache because it was so severe.
But I didn't go there because I couldn't stand the sound and the lights. So I was lying there and thinking, you know, if my body wants me to survive this, I will survive. But I'm also ready not for that to happen. So I was at my totally lowest part of my life.
I just couldn't stand lying there anymore. I couldn't. do anything.
I couldn't even take care of myself and go and take a shower. So at that point, I told myself that I have to make a decision. And the two choices I had, one choice was to end my pain and to end my life. And the other choice was to start living again, because I was just surviving at that time. I was nothing.
I had nothing in life. I couldn't even be with my kids. And they were so small and, you know, they wanted to be with their mom and they couldn't. So I made a decision to continue living because, you know, mostly because of my kids, actually not so much for myself at that point.
But I'm glad that I took that decision because that's, you know, today I'm well. But at that time, it was really, really dark. I had a lot of dark thoughts. And, you know, this is so unfair to a person to feel like that.
I was so, so, so sick. I didn't know if I was going to wake up the next morning. And then I decided, okay, so I'm going to continue living.
And what can I do then to get out of this room? Because, you know, I couldn't lift my arm. I couldn't take the glass and drink water. So how am I going to...
How am I going to get out of this? You know, it seemed impossible. But the first thing I started doing was working with my thoughts, you know, and asking myself the thoughts I have.
Are they true or are they false? Is it for real what's happening to me right now? And I started looking at my thoughts and see, okay, which thoughts do I want to keep and which thoughts do I want to, you know, put aside?
And I started working a lot with my mindset. And the mindset is the thing that took me out of this disease. A lot of other things too, but the mindset has been so important for me.
So I started using my thoughts in my advantage instead of letting them push me down. And I also became very mindful. I started eating mindful, drinking mindful. I invited my kids in the room. Even if I didn't have any energy or even if I had really severe symptoms, I decided that those five or 10 minutes a day that I gave them was like the high point of my day.
So I let them come in my room and we played some cards and they talked to me a little bit. And I was just mindful the whole time. And I looked in my...
kids'faces and saw the life that was outside of that room and, you know, what else is out there. This is not life. This is not where I'm going to stay in this room.
I have to get out of here. So I started using them as a way out. And also I changed my diet and I ate an anti-inflammatory diet.
And that helped me a little bit. So all these work with thoughts and mindfulness and the food. It took me out of that room. I could, to start with, I could sit up and that was just like, wow, I can sit in my bed. I'm so happy.
And then after a while I could start getting out of the room. maybe lie on the sofa. You know, I heard the kids around me. I could feel them.
They could touch me and all of that things helped me. So I worked a lot, a lot, a lot with my thoughts and my mindset, you know, what do I want with my life and which direction do I want to go? And all those horrible thoughts about the disease and the symptoms and the automatic thoughts that just lets you stay in the disease.
you just think about your symptoms all day long. They didn't help me. I realized that quite fast that that's not going to help me. So I do understand that I have symptoms.
I feel them. I feel them physically, but I don't have to think about them all the time and worry about them all the time because it doesn't make any difference. It doesn't change anything. The only thing it changes is that I get stuck in that state. I started visualizing myself when I was recovered and what I would do with my kids and my life.
And yeah, I did a lot of self-searching and I looked inside myself and I found a strength that I didn't believe I had. So yeah, that was the beginning of my recovery story. Wow, Kim.
I am so sorry that you've had to go through this. That sounds like an absolute nightmare. I appreciate you being so honest about how difficult it is and the thing that really popped out to me is you think what do you do what power do you have to change things when you're bedridden when you can't sit up when you can't stand light sound you can't move like it can feel very powerless and I just think that's so profound how you said I start with my thoughts and everyone I speak to no matter where they are on the spectrum That is essentially the starting place.
You know, the spectrum of severity is, you know, mindset. And which sounds so simple and like something that doesn't have a power to change a lot. And of course, it's more than just that.
But it's a really, really impactful place to begin. That was one of the absolutely most important things for me was my mindset and finding my inner strength. And knowing that I could recover to go from, you know, reading on all the Facebook groups where all people are talking about how negative everything was. And it was, I mean, it was horrible to be in that state. It was horrible to be that sick.
And of course, I was worried about my future. Is this going to be my life now? I have to deal with this, you know. But. I came to an acceptance that, okay, this is what it looks like today, but that doesn't mean it's going to be like this forever.
Because I can find ways out of this. I can. I know I'm strong enough to do this and I can change because that's what I think I need to do. Because the thoughts and the behaviors and the feelings that I had before I got sick. Those are the things that made me sick from the beginning.
So to get out of that, I have to change. I have to do small changes the way I can, you know. Every little small thing I could do, I did. And when I took that decision and I realized that this is going to be up to me because I have choices and I have to make every choice the best choice I can.
my experience and from my childhood and, you know, the way I lived before it. But, you know, I had to find solutions and I had to find a way out of this and I was going to do it, whatever way it took. So every little thing I could do, I did. So the thing with the mindfulness was also a big thing because I started enjoying food much more and I was thinking about the food, like this orange is...
It's going to give me vitamin C and it's going to give me some fluid and I'm going to feel so good after I eat it. And, you know, it could sound really silly. to do it like that. But that's the way I did it. And it helped.
It did help me to get better. And yeah, I got some help from the clinic with Q10. And I'm not sure that helped me a lot, but they told me it would help your energy a little bit. So I took that for one year, and I'm not sure it helped, but I did.
And then I also got help from a woman who helps with the AIDS and stuff in the home. When you are sick, you need to get some help. And I got one of those electric wheelchairs. And that's when I could get out of the house for the first time in like one year. So I took that wheelchair and I went outside and I could stand maybe two minutes.
And then I went in. Okay, so now I tried. I did two minutes. And the next time maybe I could... stand five minutes.
And then I continue like that. And I went out and, you know, on that wheelchair and I took my kids. They sat in my lap and we went around.
And one of my most important parts of this recovery is the forest, because I'm brought up in the north of Sweden and I lived around the forest and the forest was always a part of my life. And I hadn't been in the forest for a very long time. So I took. that wheelchair and I went out into the forest and I just sat there.
I didn't do anything. I just sat there and I talked to my kids and they were running around and climbing in trees and stuff. And I just sat there and, okay, mommy's too tired. We have to go home. And that's how I got in contact with nature again.
And that was a big thing for me because it's, yeah, it's a lot of things, just even the chemicals out there, you know, the comments comes from the trees and the... the fresh air and all that stuff that really really helped me before you go on i just i remember you were saying before that the wallpaper on the wall behind you you did it during recovery yes can you tell us about that yeah i changed my environment also i had to to make it be more more healthy for me so i put the the wallpaper behind me the forest here and i colored the the walls green because it's a soothing color And I put in some nice pictures and some nice flowers and stuff that I could look at when I was lying in here. Because the first time I was lying in one of those sofas that you make a bed out of, and that was really uncomfortable. So my husband helped me to get a real bed in here.
So one of those that you can change the back and the knees and stuff so I could lie more comfortable. So, yeah, we worked on the environment and we worked on, you know, getting the whole recovery to become more. No, but we changed the environment for my health and for my recovery to go better. And that was that was also one step where you could take. And very early, I understood that I had to go outside and get daylight because of it.
D vitamins and the energy and stuff. And also very, very early, I started moving. So I moved my body on whatever level I was on. So when I was in bed and I couldn't get out of the room, I was wiggling my toes. And that's also one thing that can sound really silly, but that was what I could do.
So I did that because at that time I couldn't lift my arm, but I could wiggle my toes. So that was something. And I told myself to do whatever I could to change. So, and then I started bending my knees.
And when I got up and I could walk, I walked outside on the balcony for two minutes. And I did some stretching. And then I went back to bed and I was like there for 23 hours and 30 minutes. And then I went out again, you know, before I got my wheelchair.
So, yeah, I used my body as much as I could. the level I was on with the energy I had. So for the nature, the movement, the daylight, the diet, the thought works, the mindfulness and all that stuff took me from, let's say, 5% to 40%.
And then I found ANS Rewire program and I went that program and that took me from 40% to 70% in three months. And I continued that program for a while. And I saw the movies like three times and I took some notes and, you know, tried to really learn everything. And so after that, I started a lot with meditation and brain retraining.
And those are the big things that I did. And then nature was always a big part of my recovery. So, yeah.
There are studies that show that people in hospitals who have a hospital room with a window facing a tree recover faster than those that don't. And even people who have a window facing a building that's painted green. recover faster than people facing a wall that's, say, painted gray.
So it's really nice to know that even if you can't get yourself into a forest, just having a picture of nature or even the color green can help in some small way. Is this your full piece of recovery? Probably not. But it's, you know, the little things, it sounds like you're saying from your journey, it is a whole bunch of little things that slowly built up and accumulated over time that started to get you places. And the thing that the brain is so simple in that way, because we can fool our nervous system.
We can cheat it by, you know, looking at a picture or thinking about the forest. That's enough for us to get the nice signals. So I worked a lot with that, you know, always choosing the nice thoughts and the things that would make my mood a little bit better. And I also always try to do things that I like to do, things that I really enjoy, because that made my nervous system calm. And even if I was stressed and my body was showing nervousness, I could calm it down by just thinking nice thoughts and thinking about what I wanted to do and doing the things I love.
Because when I went through my recovery quite... a long time. It took me almost four years, but the first year was between five to 40. The second year was between 40 to 70. And then after that, it took almost two years to become 100% recovered. So I continued using all the tools that I got and I continue working on my mindset because I realized that the mindset made such a big difference.
Because when you take the decisions that... is good for your health instead of choosing the other way and also taking responsibility for your own recovery and and see even even the thoughts that you don't do the things that you don't do is still a choice so if you let's say we you decide what to eat and you decide today you're too tired i'm so tired i cannot deal with anything i'm just and then you eat the cinnamon bun That is still a choice that you do. You didn't choose to eat that salad because you were too tired to cut the cucumber, you know, but you chose to take that cinnamon bun and you have to accept that that was your choice and then move on and be in the right mindset of that choice that you took. And that helped me a lot. So even when I chose the things that were not good for me, I still accepted them.
And that was my choice. And I did it. So I was accountable for everything I did.
And that was important to me. Yeah. So that first 40%, it sounds like it was that taking responsibility, making the choice, finding little bits of joy, working on your mindset, moving whatever amount you could, whether it was wiggling your toes or going outside for a few minutes. And then ANS Rewire got you up to 70%.
And for people who aren't familiar, that's Dan Neufer's program. Focuses a lot on the autonomic nervous system and different things. I can link it in the video description and also link some videos he's been on the channel if you're interested in learning more.
So that got you to about 70%, which is significant. And then you said you carried those tools on, but it sounds like there are some additional things in the last couple of years. So what were some of those things?
I think that I worked a lot. with the mind-body connection. I worked from my head to my body and affected my body by doing the thought work and the brain retraining and the mindset and all those stuff. But I realized that since I also, like a lot of other people who has ME, I had a lot of trauma behind me. And I thought that I worked those things out before I got sick.
But I realized that some of them, were still there and also during my recovery, I experienced new traumas. Both my parents died with a one and a half year in between. And we had a big fire in my house that was very traumatic.
I had both my kids, my dog and my husband and me. We were in the house and it was in the middle of the night and the electricity was not on. So we couldn't see anything.
The only thing we saw was the flames. So that was very traumatic. And those things are also new trauma that you have to take care of. And that was in the middle of May. recovery. So I realized that I had to work a little bit more with my body and my feelings.
What do I feel in my body? And do I have pain somewhere? You know, I have restored energy from those traumas in my body. So I worked a little bit with that and tried to move more consciously and know what feelings I felt. Just feeling my body in the moment, mindful, and not just with my thoughts and being my thoughts all the time.
So I worked a lot. And I think that's a big puzzle piece for a lot of people with this disease. That we talk a lot about brain retraining.
We talk a lot about the nervous system, which I believe is the cause. But we also have traumas stuck inside of us that we have to deal with. Those are big stressors that we also have to take care of.
So it's not enough maybe just to do the brain retraining. We also have to, you know, work on what happened before we got sick. You know, how come we got sick?
We have to go back and see. And also what's going on in my life right now? Because even if I get 100%, which I am today, I'm fully recovered.
I still have a life. And things are happening in our lives, whether we want it or not. And it's always going to be like that. So even after we recover, we still have to be mindful about what's going on in our lives. And how did that affect me and my body?
So it's also the work about building back the body and the muscles. Because I was lying down for almost two years. And of course, my body gets deconditioned. I have to...
you know, build up my muscles and build up the nerve system to understand the body again and all that stuff. And that's why it took some time the last two years, I would say. I was over 70, 80% for a long time. And last year I was maybe 90%.
And now, I mean, I haven't had symptoms for so long, for years, but I didn't see myself as fully recovered until I could feel like I wasn't scared anymore. I didn't trigger my nervous system when things happened. I didn't go back to the old behaviors that I had, the old thoughts that I had.
All of that things take time to change because I'm a different person today than I was when I got sick. So I think that's why it took time for me because I didn't work on the body, mind that much in the beginning. I worked a lot with my thoughts. brain training and meditation all that stuff so I think that was the the clue for me yeah what has your experience been like because one of the great things about getting to talk to people all over the world is to see what the perceptions of and the approaches are to conditions like ME so what is it like in Sweden from your experience how do they treat it what are the thoughts around it and how have people responded to you yeah it's horrible I mean they don't know anything about this disease.
They don't learn anything in medical school and they don't know anything about post-COVID or these kind of conditions. It's just, and they don't believe you either. I did have one of those traumas also during my, in the beginning of my disease, because I got on sick leave, but I only got the money for three months. And then the state told me that, you know, you're not sick enough.
because we don't have a blood sample that tells you that you're sick. So you cannot get this money. And I was so sick that I couldn't fight it.
So I had to ask my sister to help me. And we went to the court to get my money back. And that took over one year to get my money back. So I didn't have any money for a year. And I was super sick and I couldn't work.
And, you know, that was a big stressor. So, yeah, it's... It's horrible in this country, and I'm sure it is in a lot of other countries, too. They don't believe you.
They don't believe you because there is no sample telling them that, you know, this is me and, you know, what happens and no evidence for them. So, yeah, you get pushed out of the society and you don't get any money for being homesick and you're not believed at all. And, yeah, that's really, really bad. It's not a good thing for someone who's very sick. Yeah.
Well, you have clearly learned a lot. over these years with your experience of going through this a tremendous amount and I know it's not available yet but like many people it sounds like it's made you passionate about spreading this information because it clearly is not readily available to many people and I know you're putting together a program so tell us how did you decide wait I want to do something with this information and what are you doing with it what does that look like yeah I wanted to take all the information and all the knowledge that I had from before I got sick, when I worked in the health care for 20 years. And then I wanted to take all the information and all the knowledge I learned from my recovery. And then I went to school one year to become a coach and learn more about how to prevent disease, not just work with people who are already sick, more about how you can take care of your body to not get sick. And I also got a coach.
degree in that. So I just felt like all this information should not be only for me. I should spread it around and, you know, help other people because I think I can do that.
So I started my own company this year and I am now a registered coach and I help people with me, CFS, long COVID and burned out people and with one-on-one calls on video. And I am... also doing a program, a recovery program in Swedish, because we don't have any of that in Sweden, in Swedish. So I thought that could be a good idea. So now I'm making that program right now, but it will be out in October for Swedes.
Oh my goodness. Yeah. So amazing. Oh, it just gives me goosebumps to think of, especially hearing about what it's like in Sweden and the lack of support and resources that you have.
This is so... needed and with your experience and your knowledge and expertise on this what an incredible thing that you're doing this is absolutely amazing kim for people watching we'll make sure everything that you need to know about kim and her coaching and ways to get in touch with her are in the video description so please just expand the video description take a moment to take a look at what's there especially if you're in sweden what an incredible resource but i imagine you work with people online you are the somewhere they are for some of you yeah mostly mostly in sweden and and Europe. Yeah. Okay. Wonderful.
Well, Kim, this has been amazing. I thank you so much. Oh, it's heartbreaking to hear about what you've been through.
Nobody should have to go through what you've gone through, but it's just really moving to see how you've come through it and all you've done with it. And I'm so happy that you are here where you are and doing well and also spreading this information and helping other people. as well. So yeah, thank you. Thank you for taking the time to speak with us here today.
Really appreciate it. Thank you. And thank you for everything you're doing.
You're doing a good job, very, for so many people, a really good job. So thank you for that. I love doing it. It's a privilege and an honor for sure.
And for people watching, I know it's a lot of information out there. It can be really overwhelming. We're working on a series here on the channel that just to help you sift through the recovery programs to see what might be the best fit for you. So if you haven't already subscribed, I invite you to consider so you don't miss that.
And I also put out weekly newsletters that summarize a lot of these interviews here, just really quick bullet points, what worked, what didn't, key resources that help people to recover. So there's a link in the video description for that as well, if you're not already a subscriber so that you don't miss a thing. So yeah, thank you again, Kim. Thank you to those of you watching. Big hugs to all of you out there, whatever you're going through.
Keep at it, keep going. You've totally got this. I hope you enjoyed this interview as much as I did.
I hope you got a ton out of it. And I hope to see you in this next one here that I've chosen that I think you will really like.