I've been battling the complexities of Myalgic Encephalomyelitis-Chronic Fatigue Syndrome (ME-CFS) and Epstein-Barr Virus, conditions that have significantly impacted my life. I'm committed to shedding light on these misunderstood illnesses and sharing my personal experiences and struggles. From the long journey to diagnosis to the battles fought on a daily basis, I'll be unveiling the realities of living with these conditions. This isn't just a recounting of my journey; it's a plea for understanding and respect.
I've been battling the complexities of Myalgic Encephalomyelitis-Chronic Fatigue Syndrome (ME-CFS) and Epstein-Barr Virus, conditions that have significantly impacted my life. I'm committed to shedding light on these misunderstood illnesses and sharing my personal experiences and struggles. From the long journey to diagnosis to the battles fought on a daily basis, I'll be unveiling the realities of living with these conditions. This isn't just a recounting of my journey; it's a plea for understanding and respect.
*For speaking inquiries or for questions or comments on the podcast, contact Nickie at healandgrowwithnickiepodcast@gmail.com
Disclaimer: This podcast is for informational purposes only and should not be considered legal health or professional advice.
Nickie is not responsible for any losses, damages, or liabilities that may arise from the use of this podcast.
This podcast is not intended to replace professional medical advice.
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Today's podcast mentions suicide. If that's not something that you wanna listen to today, feel free to skip this week's episode. Hello everyone, this is Nikki. I have a favor to ask of you. If you are enjoying this podcast, could you please share your favorite episode on your social media? Better yet, could you please write me a review on Apple Podcasts or Spotify or wherever you're listening to this podcast? The reviews are really helpful in finding other people who might be interested in this podcast, so if you could do that for me, I would really appreciate it.
Speaker 1:
Welcome to Heal Grow with Nikki. I'm your host, nikki Kraminga Hill. Here we talk about everything Grief, hope, illness, work, family, tragedy, possibilities, fun stuff and not so fun stuff. It's all on the table. Let's take a look at our lives and work to heal and grow together. I'm so glad you're here, hey ho.
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Today we are talking about ME-CFS, which stands for myalgic encephalomyelitis and chronic fatigue syndrome, but, as you can see, it's much easier to say ME-CFS. I'm guessing that I will chat about this a lot in upcoming episodes. I've actually been teasing this topic since I started the podcast in May, but I haven't really been ready to talk about it and tell about now, because right now, I'm actually feeling better. So I was diagnosed with fibromyalgia in May of 2022. Fibromyalgia is a different condition. Fibromyalgia is more pain than fatigue, and ME-CFS is more fatigue and less pain. There's a lot more involved in that and it's a lot more nuanced than that, but that's just a little snippet of the difference between the two. Today, I'm going to be mostly talking about ME-CFS, and I have another favor to ask of you. I ask that, unless you are a medical professional, or unless you are someone who deals with this directly, I'm going to ask that you don't give me any advice, please. I get a lot of medical advice from friends and family who really care about me. Their hearts are in the absolute right place. They want me to feel better, they want me to just live better, and so they want to offer up advice and suggestions, and although I know they're trying to be helpful, it ends up not being very helpful. So, unless you are a medical specialist or someone that deals directly with ME-CFS, I'm going to humbly ask that you don't give me any advice on this and that you just listen to what my experience has been. Obviously, my experience with this might be different than another person's experience with it, so I'm just sharing my story. So, before we get going, I'm going to share with you the CDC definition of myalgic encephalomyelitis chronic fatigue syndrome.
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Me-cfs is a disabling and complex illness. People with ME-CFS are often not able to do their usual activities. At times, me-cfs may confine them to bed. People with ME-CFS have overwhelming fatigue that is not improved by rest. Me-cfs may get worse after any activity, whether it's physical or mental. This symptom is known as post-exertional malaise PEM. Other symptoms can include problems with sleep, thinking and concentrating, pain and dizziness. People with ME-CFS may not look ill. However, people with ME-CFS are not able to function the same way they did before they became ill. Me-cfs changes people's ability to do daily tasks like taking a shower or preparing a meal. Me-cfs often makes it hard to keep a job, go to school and take part in family and social life. Me-cfs can last for years and sometimes leads to serious disability. At least one in four ME-CFS patients is bed or housebound for long periods during their illness.
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Scientists have not yet identified what causes myalgic encephalomyelitis chronic fatigue syndrome. It is possible that ME-CFS has more than one cause, meaning that patients with ME-CFS could have illness resulting from different causes. In addition, it's possible that two or more triggers might work together to cause the illness. People with ME-CFS often have their illness begin in a way that reminds them of getting the flu. This has made researchers suspect an infection may trigger ME-CFS. In addition, about one in 10 people who become infected with Epstein-Barr virus or Ross River virus will develop a set of symptoms that meet the criteria for ME-CFS.
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Okay, I'm gonna stop there. There's a ton, ton, ton of info on ME-CFS. If you're interested in doing your own research, there's even more to the CDC definition, but I stopped where I stopped because what I just read describes me. So I've actually been struggling for most of my life with ME-CFS, but I've only known about it since last November, november 2022. I am 48 years old and my symptoms started when I was probably about 11 or 12, I would say I used to skip my high school classes. I used to skip my college classes so that I could go to sleep.
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I have, in a previous episode, talked to you about my hospitalization for mental health issues back when I was 16. I believe some of that was caused by ME-CFS. I also dropped out of college and then went back, but I think my dropping out was also partially due to ME-CFS. I have gone to doctors on and off my whole life with the symptoms just described and I was told there was nothing. There was nothing wrong with me. All my blood work would come back fine. I've had MRI and CT scans in relation to these symptoms. Everything came back clear. I was told it was nothing, and so I thought it was nothing. It's also when my doctors told me that I should get some mental health help, which, as you probably know if you've listened to this podcast prior, I've been doing since I was 16. So there's nothing physically wrong with me. So I assume there was something mentally wrong with me. So I have only been getting mental health treatment for these symptoms since I was 16.
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I thought that I was lazy. I didn't really wanna talk about it with any of my friends because, like, who isn't exhausted all the time right? What I didn't understand is that being tired and being chronically fatigued are two completely different things. I didn't wanna talk about it with any of my friends who are moms because, of course, they're exhausted all the time, right. And I thought, gosh, so many people have it worse than I do. I'll just keep going to my mental health appointments and my mental health care has been great and I have seen some improvements to my symptoms a little bit just as a person who goes to therapy all of the time and as a person who's on antidepressants and anti-anxiety medication. But this overwhelming fatigue like I can't get through an entire day without sleeping for four to five hours has not gone away since I was about 11 or 12 years old.
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So fast forward to 2020. It is pandemic, and I am completely stationary. I'm not really moving at all. I can sleep as much as I want to. I'm not performing. I'm used to doing eight shows a week, which brings a ton of exhaustion and muscle pain, but I'm not doing that because it's COVID. I'm also not choreographing, I'm not teaching, and I still feel just as bad as I've always felt.
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And this is when I'm finally realizing wait a second, there's something wrong. And I thought it for years, but I kept being dismissed and I kept allowing it to be dismissed. But when I completely stopped moving and I was just as horrible as before, I thought, okay, I gotta continue to pursue this. Now. This isn't nothing, this is something.
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So I go back to my GP, someone that I've seen for a long time and he runs all the regular tests again and I think that's when I had a second MRI, I can't really remember but he runs the basic tests and I do a follow up with him and he says there's nothing wrong. And I finally say I understand that these tests are coming back and saying that there's nothing wrong, but there is something wrong. Now, this is the first time that I've actually said this at the doctor. I've always just said okay, because you know, they're the experts. And it's the same thing, like with my car. I don't know anything about my car. So when I take it in to be serviced, I believe every single thing that the service people tell me, because I don't know any better. So it's the same thing with the doctor. So I finally say to him there's something more. I need to get this looked at more.
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And he says to me well, and he was trying to be very diplomatic about it, but he's insinuating that perhaps this is all in my head, which is not the first time that this has been said slash insinuated to me, but he's insinuating it and I go with it and I say okay, okay, let's say that there's nothing physically wrong with me. What are my next steps, because I don't wanna continue living like this anymore. What are my next steps? And he said well, you should probably get in to see a therapist. Now, all of this isn't my chart. I say to him I've been seeing a therapist since I was 16. What else? He said well, you should probably get on some antidepressants or maybe anti-anxiety medication. I said yep, I'm already on both of those things. I've been on this medication for years. It does help with my mental health issues, but it hasn't helped with this pain and this fatigue.
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He said well, and I could tell that he was trying to. I could tell that he was trying to be careful about his words. Like I said earlier, he was trying to be diplomatic, but he wasn't sure how to broach the situation. So I finally just said okay, let's say it's all in my head and it's completely psychosomatic. What are my next steps? And he said I don't know. And I said can you refer me to a specialist that deals with psychosomatic illnesses? And he said well, I don't know anyone. And I said great, thanks for your time. Bye, and I left and I was livid because I understand and I'm in a huge favor of people saying I don't know. When they don't have the answer, I'd much rather someone says I don't know than make something up. However, I wish that he would have said I don't have the answer for you right now and I can talk to my colleagues, I can refer you to someone else, like there was no extra help involved. So I left and I said, okay, I just have to do this on my own.
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So I put all my symptoms into the Google search bar and immediately fibromyalgia and ME-CFS pop up. And I was shocked because my mom had both of these things and I have spent a lot of time in my life trying to not be like my mom. My mom was always sick and it was a problem in our relationship and I just didn't want to be like her. But there was just this moment of clarity after that search. I was like, oh yeah, I have to get tested for this stuff. And I did. And, long story short, I was tested for fibro. I have it. And then I wasn't sure. And there's no diagnosing. These types of illnesses is a process of elimination. So when I say I got tested for fibromyalgia, what I really mean is I was tested for everything else that looks like fibromyalgia. Lyme's disease is one, ms is one. All of the other tests came back negative. Therefore, we defaulted to fibromyalgia and then I decided I really wanted to get looked at for ME-CFS.
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I ended up finding a couple of doctors' names on a ME-CFS Fibro support group page on Facebook. I reached out to one of the doctors there and I started seeing him in November and he's the one that diagnosed my ME-CFS and I really love this doctor. He's quote-unquote only a GP. He's not a specialist. However, he's been the only doctor besides my mental health practitioners and my acupuncturist and chiropractic and things like that. This man has been the only doctor that's actually listened to me and he's the only one that said let's do a bunch of other blood work instead of just doing the same old, same old.
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And I never thought to ask for other blood work because I didn't, and it was a thing you know, I had no idea. I just assumed that if I was going into the doctor, they were testing everything that they possibly could. I didn't realize that they weren't testing everything that they possibly could. So anyway, I was diagnosed with ME-CFS in November and with that diagnosis and with the fibro diagnosis, the first thing I did was grieve.
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Many people, once I started telling them, hey, I finally have some diagnoses, were like oh my God, that's so great, don't you feel so much better? And the answer is no. No, I didn't feel better. I wasn't glad that I finally had diagnoses. Now I am, but I wasn't right away. I was just sad because I felt like I had wasted a large part of my life because the only person that I knew that had these diagnoses was my mom and she wasn't around and I couldn't talk to her, I couldn't get advice, I couldn't get that kind of support. I mean, I can get support anywhere, but you know, there's this specific support when you have these types of illnesses.
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And I thought all about the things that I most likely wouldn't be able to do, because this whole time I kept thinking they're going to find some sickness with me where I can just take a pill and it'll go away, and then I can finally get through the day without napping, or then I can finally go to the gym and work out without having to crash the rest of the day. And you know, these are chronic illnesses. There are things that you could do to manage them, but they they aren't curable and there are a lot of people that would argue that they are curable. I would argue back if you were cured from this chronic illness, then I don't think you actually had it to begin with.
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Now, today, I have accepted my diagnoses. Usually there are moments when I am angry about them, but for the most part, I have accepted them. I am managing my symptoms by, first of all, not feeling guilty about the fact that I need to rest every day and not feeling guilty about saying to friends I need to go home now or I need to leave this meeting in 15 minutes. I'm much, a much better advocate for myself than I was before, because now I understand what's going on with me. However, I don't wish this on anyone not on anyone. I only have one friend that I talk to regularly about it, and that's because she was diagnosed with both things around the same time that I was. It's been very challenging to manage this with my new job. It's challenging to manage it and have a social life. It's challenging to manage it and have a dog who wants and deserves attention.
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So my doctor thinks and this makes a lot of sense to me that my ME-CFS was caused by the Epstein-Barr virus. I had mono when I was nine and it looks as if, according to my blood work, that I have been cycling in and out of mono my entire life. When you get the Epstein-Barr virus it becomes dormant, so it's always in your body, but for most people it stays dormant. It's not staying dormant for me, it's cycling in and out of dormancy. So I have continued to have mono and monotype symptoms since I was nine and we aren't sure if we're gonna be able to get that virus to go back into dormancy permanently.
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There's some medication that I've tried that hasn't really worked. I'm not gonna bore you with all of that, because, one, I don't need to and two, I don't fully understand it myself. So this whole time I thought that I was lazy, which is ridiculous, you know. And I'm not lazy, I'm sick and I don't love that label. Really. I don't know that I need to wear that label on my sleeve, but at the end of the day I am. However you wanna call it, I'm sick, I'm ill and I am not expected. I won't rid this. I won't rid this disease. It's not really a disease, it's a syndrome. But whatever it is, I won't be able to get rid of this. It is something that I have to adjust to, and now that I know that I have it, I'm able to adjust.
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The things that I'm doing that are working for me right now are a bunch of things medication. I'm on a few different things that I could talk about some other time once I know that they're really working, because it's been since November that I've been experimenting with certain medications, so I am on medication. I also do acupuncture, cupping and body work about twice a month. I've also been doing something called matrix repattering technique. That has helped some pain quite a bit. I also have adapted some better sleep habits. I've been getting up at around the same time every day, which is helpful for everyone, not just people that are experiencing chronic illness. I've just been really forgiving of myself.
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I've been beating myself up about this for years because I thought that there was something wrong with my thinking. But that's just not true, and so I am learning to shed that, which is difficult. When you've been telling yourself certain things for years, like you're just lazy, or you're just a super anxious person, or you're just really, really depressed it's challenging to change those thought patterns. But I am working on it and it's starting to help, and I'm also just I'm careful about who I share this information with, except apparently now, where I'm gonna share it with whomever wants to hear about it and wants to learn about it, because, like I said earlier, there's so many people and they're well-meaning but there's so many people that are telling me how they think that I should live my life regarding this, I can't tell you how many people from MLMs you know try this supplement, try this essential oil and I'm not against supplements or essential oil. However, those things they've been touted to me like you should just wait. You'll get cured if you just do this, and that's just bullshit. It's just bullshit.
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I have tried changing my diet in the past extensively. That has never worked. The reason why I quit caffeine about two years ago was to see if it gave me any more energy. The answer is no. Quitting caffeine did not give me more energy. I am sober now, but in the past, when I've tried to quit alcohol, it was to see if I had any more energy and the answer that is no. I didn't have more energy by quitting alcohol. I'm sick, and what works for a typical person to get more energy? Eating better, no, drinking no caffeine that doesn't work for me. But for years I've been trying these things and being like why can't you just get your diet figured out? Why can't you just get your alcohol issues figured out?
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So I hold this diagnosis close to my heart and simultaneously share it with the world, because I just can't take any more of the advice or suggestions, no matter how well intentioned. I just need people to love me exactly how I am, feel free to check in. A lot of people don't check in because I look fine. If you look at me, you would never be able to tell. And that's not me acting Well, sometimes it is me acting. Sometimes. I just don't want to get into it with people so I just smile and say I'm great. When I'm not great, but because I look fine, it's rare that someone's like, hey, how's your health? And people ask me hey, are you feeling any better? I don't really know what to say because no, usually I'm not feeling any better and I'm not expected to. But who wants that response? So I just say I'm okay or I'm doing the best that I can.
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It's been rough. It's been more than rough. It's been so freaking hard. It's been so freaking hard since I was a little girl and the times that I thought about committing suicide. I think had something to do with this, because if you're not sleeping, you're not surviving, you're just surviving, and I've been only surviving since I was like 12. And so here I am on the other side of a diagnosis, which now I am grateful for. Here I am taking care of myself as best as I possibly can, knowing that I will most likely never feel better, which really sucks. It really sucks. Could it be worse, of course, but that could it be worse.
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Thinking has kept me from speaking about it, and I'm tired of holding onto this alone, and so I share it with you, in the hopes that you could be more understanding of people with invisible illnesses. It's very easy to care about someone who has a cast on or who has lost their hair, because you could see that and you know, oh, there's something unhealthy about this person right now. How can I help them? And so I ask that you just pay a little more attention to people with invisible illnesses. If you have a friend that has an invisible illness, reach out to them every once in a while and ask them how they're doing, because it's easy to forget that they're sick.
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I don't ask for any pity at all. Please, please not. Oh I feel so bad for you. No, don't feel bad for me. This is just my life. Please don't feel bad about it. I've also had that response when I've been public about my fibro and my ME-CFS. Oh I feel so bad for you and I know it's because people care about me but please don't feel bad about it. People care about me, but please don't feel bad for me.
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What you could do is educate yourself and also believe people who say I'm sick, even if they don't look like they're sick. Thank you so much for listening to me today. I will be talking about this, I'm sure, again in the future, but it feels good to just say all this to you right now and to tell you this truth about my life and about who I am. And if you are a personal friend of mine, you know I've canceled on you a thousand times and I want you to know that the reason why I've canceled is because I've been too sick to get together and I have lied to you about that because I didn't think that you would believe me.
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So I make stuff up and what I'm trying to do, what I've been doing lately, is just saying I don't have the energy for this today or I don't have the capacity for this today, instead of like making up an excuse because that hasn't served me, nor has it served you when I lied to you about that. So I apologize for that and I'm really working on just being more honest about how I'm doing and how I'm feeling, as always. Thank you for healing and growing with me today, mwah. This podcast is for informational purposes only and should not be considered legal, health or professional advice. I am not responsible for any losses, damages or liabilities that may arise from the use of this podcast. This podcast is not intended to replace professional medical advice. Thanks, kid.