It was really fun chatting with Suzan on this podcast episode, even though we were both having Plan B days (read the transcript or listen to the podcast to find out more about those!).
Both Sue and her two sons suffer from Lyme Disease and ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome). They’ve overcome a lot of adversity together as a family, and come out closer and stronger because of it.
Listen as she shares why and how she’s more empathetic and patient now. What her passions and dreams are as someone who’s chronically ill. And how she copes with both big crises and the unpredictability of everyday life.
Happy listening/reading, and see you in the next episode. You can find the transcript below!
*Disclaimer: This article and the podcast are meant for educational purposes and are based on personal experiences. They are not to be substituted for medical advice. Please consult your own doctor before changing or adding any new treatment protocols.
Follow and listen to ‘Sick Lessons’ on your favourite audio platform(s) here: https://sicklessons.buzzsprout.com/
- Slow down – you’re right where you need to be. Pushing yourself only makes things worse.
- Connections and relationships are some of the most important things in life.
- Finding your community allows you to be supported, and also to support.
- Prepare for Plan B Days, with recognition and acceptance as the first steps.
- Be more empathetic and less judgemental; Everyone, healthy or otherwise, lives with some ‘invisible’ problems of their own, too.
- Nature is a game changer for better health and well-being.
Transcript of Episode 4
Sheryl: Hi Suzan. How are you today?
Sue: I’m good.
Sheryl: Okay, I have a slight fever. So I look a bit rundown, I think. And you? You had a rough night.
Sheryl: Yeah, and thank you for still showing up for the interview, I really appreciate it.
Sue: Well, I’m happy to and we had so much trouble trying to coordinate with a 12 hour time difference. So.
Sheryl: Yeah, exactly 12 hours. It’s a bit difficult, especially with chronic illness. It’s either too early or too late.
Sue: Exactly. We both have a narrow sweet spot that we have.
Sheryl: So, if If you’re like both kind of like spouting nonsense in this episode, I hope people understand.
Okay. Would you like to briefly introduce yourself and tell us anything interesting or unique about you or your circumstances?
Sue: Sure. I got sick in 2002 with ME/CFS, which is essentially an immune disorder. 75 to 80% of ME/CFS patients have a very abrupt start to their illness and I fall into that group.
So on March 1st 2002, I had a very typical, busy, active day. I was a mother to two young boys. I had quit my job because I wanted to slow things down and spend more time with my kids.
But it had been a Saturday. We had a really busy day, we had friends over, I did an exercise class at the Y, and then I woke up the next morning, March 2nd, just feeling terrible. Worst sore throat of my life, flu-like aches.
My body just felt filled with wet cement. I was just so completely exhausted. It was like beyond anything I’d ever experienced before and I thought, “Oh, I must have picked up a flu or something”.
But it never went away. So that was how it started. And, as I said before that, you know, I lived a very active life. Before I left my job, I had had a very… pretty big career. I travelled all the time. I was doing consulting and training, so it was a big shift for me.
And then two years later, both of my sons also got ME/CFS, which is like a punch to the gut.
Sheryl: Is this like hereditary, or…
Sue: It is. They haven’t quite identified the genes involved, but there’s definitely a genetic link. It definitely runs in families.
Sheryl: I think you wrote on your blog that you caught COVID, if I’m not wrong?
In January this year, yeah, my father-in-law’s been in a nursing home, and the nursing home had an outbreak there. So I caught it, my son caught it, my father-in-law caught it, you know, even though we were all wearing masks.
Sheryl: Cos you mentioned how fast ME/CFS hit you, right? And the symptoms, how similar is that with getting COVID?
Sue: Well, the difference is, I knew I was getting COVID because my father-in-law got it first, and then my son got it, so I was waiting.
So you know, with COVID the first morning I woke up with tightness in my chest. I knew, okay, now it’s my turn. You know, I’m going to get it, too.
People with ME/CFS are more susceptible to bacterial infections. Our bodies like, fight too much against viruses and not enough against bacteria. So I’m very prone to bronchitis. So I immediately, you know, if I get any tightness in my chest or the tiniest cough, I know.
Sheryl: Specifically bacteria or like even fungal infections and viruses, too?
Sue: I don’t know where fungal infections fit but our immune systems overreact to allergens and viruses generally. I think viruses can go either way, depending on what they are.
Sheryl: Is the fatigue from COVID as bad as ME/CFS?
Sue: Well, with COVID on top of ME/CFS, I was completely knocked out for three days.
Sheryl: So I guess you can’t really tell.
Sue: Right, right. I was pretty much bedridden but my son, who is now perfectly healthy, when he got COVID and we’ve all been vaccinated, he was very sick for about a week. So it really knocked him out, too.
Sheryl: And which part of the U.S. are you from?
Sue: I’m originally from Western New York, Rochester. I know that probably doesn’t mean anything to you, but it’s still the East. Now I live in Delaware, which is along the east coast.
Sheryl: I mean, I get to talk to different people in the interviews and also meet them online in support groups and stuff, so yeah, it’s interesting.
So let’s move on and let’s ask, what are the top three biggest life lessons you’ve learned from living with chronic illness in particular?
Sue: I’ve learned a lot. ME/CFS completely changed our lives. Not just me but my sons’ as well. And my husband is the only healthy person in the household for a long time.
But on the positive side, I think one of the biggest lessons learned is about acceptance, and it is so important with chronic illness to find some peace to accept where you are today, this hour, this minute even.
And it’s something that our society doesn’t really, you know, our society is all about… “You can do anything you set your mind to. Just keep pushing yourself”.
Sheryl: It’s the American Dream.
Sue: Exactly. And with chronic illness, if you keep pushing you’re just going to get sicker and sicker.
It’s a hard lesson to learn even after 20 years for me, you know, learning to recognise when I need to rest, to listen to my body, to ignore those nagging thoughts saying, “But you have to get this done”, you know?
So I think acceptance is hugely, hugely important.
Sheryl: It’s something that society can’t accept, ironically.
Sue: Yes, very much so. I think the other thing that our whole family has learned is about just slowing down.
Especially at the beginning, it was very frustrating, and particularly with two kids sick, not to be able to do the things we wanted to do, But we did find benefits in slowing our lives down, in taking things one day at a time.
With three of us out of the four of us very sick at times, we spent a lot of time together as a family and, you know, we are still very, very close today because of that.
I know before I got sick I was just running through every day, you know, just pack as much in as you can. Do everything. And I think learning to slow down was an important lesson.
Sheryl: What was the process of slowing down like for you and your sons?
Sue: Oh, I would say I went kicking and screaming.
Sheryl: What constitutes a slow living kind of lifestyle?
Sue: So, I live a fairly quiet, routine life now. Sticking to routines is very important for me – for my physical health, as well as my mental health.
So my life now, I need 9 to 10 hours of sleep a night. I have to take a nap after lunch in the afternoon. That’s like absolutely necessary. That recharges me enough to get through the evening. Without that I am just useless by 4 p.m..
Sheryl: If you miss your rest or if you don’t get enough sleep, what happens?
Sue: Everything gets worse. Now for me, that is mostly fatigue. Over the last 20 years, I have found quite a few treatments that have helped.
Compared to many people with ME/CFS I actually do live a fairly functional life now, but within those limits. Within that slow routine. So if I get enough rest, and the nap is to some degree proactive rest, if I’m doing it right. It’s resting before I’m completely wiped out.
And that was something I learned early on in the illness. That was really important. If you wait until you’re already completely depleted, yeah, then you’re too wired.
Sheryl: It’s the same concept with painkillers as well.
Sue: Yes, right. They always say, “Don’t get behind in the pain”.
Sheryl: Or else you need more.
Sue: So, you know, if I stay on top of the rest, then with all the treatments that I take, I am able to function pretty well. I can manage most days – not every day – like a trip to the grocery store, or running a few errands around town.
Um, I had a bad week last week for no apparent reason. I did run some errands yesterday and it was my first time out of the house other than visiting the nursing home in over a week.
So, you know, I think saying, what is a typical day like for me is impossible, because it all depends on how I feel when I wake up and how much rest I’ve gotten.
And if I take care of myself, I am fortunate with these treatments to be able to function, to cook meals, and do laundry and things like that, yeah.
Sheryl: And how old are your sons?
Sue: They are now 24 and 27.
Sheryl: Okay, so they’re working or studying?
Sue: Well, the 24 year old is completely recovered.
Sheryl: Oh, wow.
Sue: Yeah, his ME/CFS was always milder though he got it when he was only six years old. But according to the studies, there’s actually a better chance of recovering when you get it young.
Sheryl: That’s interesting.
Sue: Ya, and also the fact that his was milder than mine and my older son’s. So after about 10 years when he was about 16, he said, “I don’t think I need my medications anymore”.
And he tried coming off of them and he did fine. So he is fully recovered, working a full-time job, lives a very active life. He’s just naturally a really active person.
Sheryl: Is it remission, or is it possible to actually recover from ME/CFS?
Sue: Well, it’s been eight years since he’s had any symptoms, so.
Sheryl: That’s great!
Sue: I do think, and I think he’d agree, he may have just some very mild lingering orthostatic intolerance. He knows he has to keep well hydrated and you know, if he starts feeling light-headed, drinking Gatorade. But it’s not impacting his life in any way.
Sheryl: That’s great, that’s great.
Sue: Doesn’t need medications and he is very active. My older son has had a tougher time. He’s 27 now. He and I both got tick infections along the way.
Sheryl: Oh, like Lyme disease, or?
Sue: Lyme disease for both of us, but he’s also got two additional tick infections.
Sheryl: Oh my gosh.
Sue: A lot of people don’t know most ticks carry multiple infections.
Sheryl: Yeah like Bartonella… something.
Sue: Yes, that’s one of the ones he has – Bartonella and Babesia. So it has been a rough haul for him. And making it even more difficult, we knew he had Lyme right away.
He had knee pain, which was a completely new symptom for him. And luckily, we had a paediatrician who was very good with all this stuff.
Really fortunately, his Lyme test came back positive. That doesn’t always happen. I don’t make the antibodies, so my Lyme test doesn’t come back positive. But his did immediately.
He got right on antibiotics, but we noticed, you know, the acute symptoms resolved with the treatment but he was left still with lingering, additional fatigue. And over the next three years he just got worse and worse and worse.
And we finally noticed this, well, we had been noticing this unusual rash on his back, and he also had pain in the soles of his feet. Both really odd symptoms and, you know, our paediatrician just kind of brushed it off.
But I was in a parent’s group online for parents of sick kids. Kids specifically with ME/CFS, Fibro, Lyme, things like that. And I discovered that those lines on his back were a Bartonella rash. So the light bulbs went off, yeah.
Sheryl: Do tick infections, always produce rashes?
Sue: No, absolutely not. And this was three and a half years in. So I think we probably first noticed the rash, I don’t know now, maybe two years earlier, but you know, everybody told us, “Oh don’t worry about that”.
So by the time he started treatment for Bartonella and Babesia, he was already three and a half years into these infections.
And then plus the Lyme, if you don’t treat the other infections, the Lyme doesn’t go away completely. So by that time, those three infections had really dug in. He’s had some major ups and downs. Depending on treatment.
He did finish college, we’re very proud of him. You know, he had to take a lighter load, take three classes at a time, and so took him a little longer, but…
Sheryl: No, that’s fine.
Sue: … He graduated with an engineering degree, which we’re very proud of. He did a great job. But by the time he got out of college, between pushing himself for school and honestly, just not taking care because he was a college student.
Sheryl: I mean, how do you take care of yourself? Stress.
Sue: He was in pretty bad shape, so you know that started kind of another low point, and another. We started seeing a new Lyme specialist as a functional medicine specialist.
So, sorry, that’s way too long answer, but…
Sheryl: No, no, no!
Sue: … The short answer is he’s doing much better today. He is looking for a full-time engineering job. There’s a gap there, so it’s a little tougher for him because he’s not right out of college anymore, but he’s searching.
And in the meantime, he found a part-time job that is somewhat flexible and that he’s managing. It’s fairly physical too, so we’re really excited that he’s managing this.
Sheryl: Because I was wondering how… Like your age differences, like there’s a gap, so I was wondering with both having ME/CFS, what the difference in lifestyle was. How you cope with the disease and everything.
Sue: Right. He was only 10 when he got it. So I think if the tick infections hadn’t come in, he probably… Because before he got Lyme, we had learned about orthostatic intolerance and we were treating that, and he was doing so much better, and he’d gone back to school, and rejoined the band, and you know, was doing great.
And then the tick infections. So, I think he would have had a better outcome. Much better without those.
Sheryl: Life is just unfair.
Sheryl: It’s something you learn too, I think.
Sue: Yes, definitely a lesson.
Sheryl: And do you have any other life lessons you’ve learned from living with chronic illness?
Sue: I think the other thing, and this was kind of a surprise to me, I wasn’t expecting this – was being able to connect with other people and help other people.
So, I started my blog about 15 years ago. I mean at first I just felt like I was documenting our journey, and I felt alone and isolated, and I was just reaching out for myself.
But what happened was as people started responding and saying, “Oh, I know exactly what you’re talking about. I’ve experienced this.”
That’s a really powerful thing. And, you know, as we began to find treatments that helped us, I shared that on my blog and on social media, and I realised that we could help other people.
So I’ve started a bunch of support groups, both online and in person. And it’s so powerful being able to connect with other people.
I truly believe, whether you’re sick or not, relationships and connections are the most important part of life.
It’s like a silver lining of being sick – Being able to reach out and connect with other people, and help other people.
Sheryl: Yeah I think if I wasn’t sick I wouldn’t have started blogging either about chronic illness. And strangely, I’ve learned a lot about other chronic illnesses as well, such as ME/CFS, Lyme, Fibromyalgia…..
It’s kind of increased my knowledge and awareness of medical stuff that even comes back to help me in the end. So yeah, it’s been interesting, just blogging.
Sheryl: So just going back to the first life lesson you mentioned about self-acceptance. How do you apply that in your life?
Sue: I write a lot about this in my book. There are a lot of chapters that really come down to acceptance.
Sheryl: What’s your book called?
Sue: I meant to bring a copy. Sorry. My brain is a little fried from last night. It’s called, “Finding a New Normal: Learning to Live Your Best Life with Chronic Illness”.
Sheryl: For people who don’t know, Suzan sponsored one of the Christmas giveaway items as well, so thank you.
Sue: So, the book is mostly about this side of things; The emotional side of things for any kind of chronic medical condition. No matter what you’re talking about, we all share some, you know, living a life defined by limits and restrictions.
One of the chapters in my book is called, “You’re Right Where You Need to Be”, and it’s a quote from a friend’s memoir. Something his dad used to tell him when he was running races, but that just really struck me as…..
It’s a phrase I kind of repeat to myself, “You know what, I’m having a bad day, and I meant to do a bunch of things, and I’m sort of fighting with my body”.
And it’s just a way of reminding myself, this is where I am today. You know, it’s not necessarily tomorrow, it’s not necessarily tonight, it’s just right now. You know, I need to listen to my body and rest.
And with ME/CFS, if you don’t listen to your body, you are punished. So, you know. I mean I still feel like it’s taken me a long time to learn this.
Like last week when I had two bad crash days just out of the blue for no apparent reason, you know, I was still frustrated by it, but try to remind myself, you know, this is it for today. Accept it. Take care of yourself.
Sheryl: Yeah, it’s not easy, especially with social media, and you see people out and about doing stuff. People your age doing stuff you want to do, so it’s tough.
Sue: The other thing that helps me a lot that I wrote about in my book, is what I call a Plan B Day. Those days when you wake up with plans and you feel awful, and your body is just saying, you can’t do any of this.
Sheryl: What’s a Plan B Day?
Sue: So it’s… First of all, it’s recognising that it’s a Plan B Day. You know? It’s a way of helping yourself accept where you are. Saying, “It’s okay, I know how to deal with this. I’ve been through this before. You know, Plan B.”
And then I outline steps. Once you accept it, it’s a Plan B Day. Then take a look at what’s really essential for today, delegate whatever you can, put off whatever you can, you know.
And it’s amazing when you really get into that mindset and you know, I was thinking this has to be done today, Then I’m like, “Well I could do it tomorrow.”
Or, you know, my husband’s very helpful, he’ll say, “You lie down, I’ll go to the store”. Or whatever.
Sheryl: Aww, that’s sweet.
Sue: It’s just a little trick that helps me.
Sheryl: I was just thinking about that today, because that’s how I was thinking today – It’s a Plan B Day for me. I have a similar system. So, every day I have a to-do list, and it’s split into like layers or categories.
So the first one would be like, stuff I have to get done no matter what, like a job or something. And then the next one is, stuff I have to get done, if I have enough energy. And then the next one is stuff I need to get done, but not necessarily today. And then the last one is, stuff I can do to relax.
After I finish one task, I will assess the whole list again to see where my energy is, and kind of rearrange it. Most of the time, I’m just throwing things to the next day.
Sue: Well, I do that without quite the organisation.
Sheryl: I always overestimate my energy.
Sue: Me too, me too. I’m a perfectionist at heart, and I am still working on that. Living with chronic illness has helped to ditch some of that, but you just put your finger on it. I always think I can do more than I can.
Sheryl: Yeah, it’s always like after the first task is done, I’m like, I’m dead, I can’t do anything else. Yeah, and for days that are Plan C, I don’t even look at it anymore, right? Because you’re just dead in bed.
Sheryl: Yeah. So actually, everything can wait.
Sue: Right. Right. That’s when you realise that really none of it is urgent.
Sheryl: How has all these life lessons shaped your personality and outlook on life? Do you think your identity has evolved because of it?
Sue: It absolutely has. Yes. Well for starters, I think I’ve become a much more empathetic person.
I think one of the early things you learn with chronic illness, well, once you get out of the very self-centered, self pitying, beginning of it, I think you begin to realise that everyone around you is dealing with their own challenge, and it might not be medical.
You know, the person sitting next to you at the school event, you know, might be going through a divorce. Or the person you see in the shopping centre with a scowl on her face, she might be dealing with cancer in a loved one.
You know you just never know what other people are dealing with, and because our illnesses are quote, “invisible”, that is something that I have learned.
You know, other people don’t know when they see me. Even people close to me don’t know. When they see me out, you know, what it took to get there. How much I have to rest before and after.
Sheryl: Such as on this podcast.
Sue: Yes. Exactly. So uhm, yeah. So I think I have become a much more empathetic person. I think I’ve become calmer and more patient.
I was definitely what is called a type A personality, and I still have elements of that. Like thinking I can do more than I can every day. But, you know, you have to be patient with chronic illness. There are times when your body just says, “NO”. And so, you have to learn.
Sheryl: It’s kind of like a, we don’t have a choice thing, you know.
Sue: Absolutely. But I find that that has leaked into other parts of my life, you know…..
Sheryl: Okay, such as?
Sue: I’m more patient with other people. There are times when I see other people getting impatient, and I’m just like a little more chill.
I’ve also discovered that when big crises happen, like I was telling you before this started, my father-in-law passed away last night. That was not a big crisis actually. He was 97 and he was ready.
But uhm, you know, when these bumps in life come up that everyone experiences, our family now is very much like, we don’t panic. We just kind of go with the flow, you know, we’ve gotten through a lot of other things, we can get through this.
Sheryl: I can relate to that, actually.
Sue: It’s helped us deal with crises.
Sheryl: It’s funny because like, stuff that people would freak out over, I’m really calm about. But I think it reached a point, because it was so repetitive every year when I was younger, I would have like, more and more things to deal with.
I got so used to it that when it was too calm, I’d start to freak out. I was like, something worse is going to happen, because it’s always like that. So I couldn’t be happy. I was like, watching out.
So, I needed like psychological help for that, to realise like, you know, you can be happy, it’s fine, nothing bad is going to happen.
I do think that chronic illness and the constant emergencies teach you how to handle big stuff really well.
Sue: Yeah. We had a big crisis with one of my sons when he was in college. He was away from home and something terrible happened to him, and we had to rush to try get him home – was a big deal.
And my mother, you know, remarked to me, “This is horrible. How are you so calm?”
And it was just like, you know, we’ve been through this stuff before. We know it’ll be okay.
Sheryl: Yeah, it’s nothing new. You know that it’ll be okay.
Sue: Always buy travel insurance.
Sheryl: Right. I always do.
Sue: And we’ve used it three times, so.
Sheryl: Everything, like, all the T&Cs that people don’t read, I read.
Sue: Before my illness, I think I was more judgmental. And it’s another thing I think about living with an invisible illness, is that, you know you don’t want to be judged. And people do judge you, or what you do or don’t do.
And I think it’s just a greater awareness of like other people’s judgements and that you don’t want to do that. Well, it goes hand in hand with the empathy.
Sheryl: I’m not sure. I don’t think I’m more empathetic. I think I’m a bit fiercer.
I’ve learned to kind of like, speak up for myself, especially if there’s like gaslighting going on, or someone else is getting bullied. I just speak up more, I think.
Sue: That’s wonderful. Well, I think it depends on where you start from? Because as a young person, I was very confident. Very outgoing.
Sheryl: Right, I might be the opposite.
Sue: Probably to a fault. Yes. So I think we just, you know, came from different places and ended up in the middle.
Sheryl: But I’m not a really empathetic person, but I am compassionate. I don’t really know what’s the difference, but I can’t really relate to people’s pain, or maybe I switch it off, because I’m already in so much pain, I don’t want to feel pain when I don’t have to.
Sue: It’s too much. Right.
Sheryl: But if someone, even a stranger, say they need help at 3 a.m. and they call me, I would help, you know? So…
Sue: Absolutely, yeah.
Sheryl: It’s a bit different for me. I’m not so much empathetic.
Okay, so with all that added knowledge you now have, what do you wish healthy people or society would do more of, or stop doing? Besides judging.
Sue: Yeah, I really liked that you included this question. Well, because our illnesses are invisible much of the time, and like I was saying, people only see us when we’re well enough to be seen.
And they don’t see the payback afterwards, or the preparation ahead of time. They don’t see us on, you know, I just kind of disappear on the really bad crash days.
I have separate social media accounts for chronic illness.
Sheryl: Okay, I didn’t know that.
Sue: I think I have two Twitter accounts. And one is just kind of my general account for everyone, and one is just the chronic illness community. And it gives me a safe place, to be completely honest, and to say I’m crashed today, and everyone understands.
And you know, I think healthy people, they either feel uncomfortable or they pity us, and I don’t think any of us want either of those. So, I wish they understood more the unpredictability of our illnesses.
I think I sometimes get misunderstood. Like, if I put a picture on Facebook of my husband and I taking a walk, that’s a big deal for me. You know, that that I felt well enough to take a walk.
Sheryl: Exactly. Yeah.
Sue: By the way, it was only 20 minutes and I was wearing my heart rate monitor. But you know, sometimes people will be judgemental and you know, be like, “Well, I saw you did this, why can’t you do this thing I’m asking you to do?”
Sheryl: But I think most people are understanding because I have my blog. So they kind of know, “Oh, she’s sick”, right?
So, it’s kind of associated with me and I don’t mind because they’re always aware that I could be sick at any time.
Sue: Right. And I think my closest friends absolutely understand that and have been amazing, you know, throughout this whole ordeal.
I feel very fortunate to have friends like that but just, you know, you asked generally what I wish healthy people would understand, and that’s yah, just the unpredictability and that just because I can do one thing on one day, doesn’t mean I can do even that same thing on a different day, you know.
Sheryl: Exactly. And I think, I mean, it’s hard to understand, but the least they could probably do is just believe you when you say you can’t, right?
Sue: Right, right. And like I said, you know, my closest friends are just amazing about that stuff. They absolutely know that any plan with me is, you know, I could cancel at the last minute and they’re understanding and they’re great. So, I’m very fortunate in that.
Sheryl: These are the only people you need in your life, in a way.
Sue: Yes, exactly. Maybe another life lesson.
Sheryl: Don’t let the haters get you down.
Sheryl: And if you were healthy, how would you live your life? If you never had ME/CFS and Lyme?
Sue: Probably much the same in certain ways. I mean certainly I would ditch the nap. Sometimes people will say to me, “Oh, it must be so nice to take a nap in the middle of the day”.
And it’s like, no! I’m living the life of a toddler. I have to completely set aside whatever I’m working on and I’ve got very limited productive hours each day.
So certainly, if I were healthy, I would maybe have a chance to do all of those things on the list of things I want to do.
Sheryl: Such as?
Sue: When I say work, I mean mainly writing. I do maintain two blogs and a YouTube channel, but those take up almost all of my energy.
Sheryl: They do, yeah.
Sue: And I’ve also got a freelance writing career that I would really, really love to spend more time on.
Sheryl: Okay, what sort of writing?
Sue: What I really want to focus on is more travel in the outdoors.
Sheryl: Outdoors. Like hiking, or…..
Sue: Camping, hiking, kayaking, yeah, just being outdoors. Now, obviously, at the moment, my hikes are very, very limited. Even on my best days, you know, an hour at a slow pace is my limit.
So if I were healthy, number one on the list would be getting back to the activities I love. You know, long hikes, not worrying so much, you know, that, “Oh, this hike is more than a mile. I can’t do that.” You know, it’s hard to find hikes under a mile.
Sheryl: You could in Singapore.
Sue: Being able to maybe go backpacking again like I did when I was younger. I mean everything I do is very limited and restricted, and it would just be so freeing to live without those restrictions, and be able to do what I wanted to do.
Sheryl: So you would be a very outdoorsy kind of person, I would imagine then, when you were younger.
Sue: Yeah, I mean I am. I am even now. It’s one of the life lessons that’s in my book is that nature is so important, and healing, and making you feel better, and lifting your spirits.
The scientific studies about spending time in nature are just mind-blowing. It affects your immune system, your heart health, it affects everything.
I’m talking about like, lying in the lounge chair out on our back deck, you know, looking up at the trees. I’m not talking about, you know, backpacking for five days or something.
Sheryl: Yeah, I read an article about that. And it affects so many things. Physical health, mental health, emotional health, spiritual health. Everything. So it’s pretty powerful. And I mean, trees release aerosols that help your physical health as well, so.
Sue: Like, even on a bad day, if all I can do is lie out on the deck, just like, listening to the birdsong, watching the trees move in the breeze, it just seems so calming. Has such a positive effect.
Sheryl: That’s nice that you have that in the U.S.. Here, it’s a lot of city and I guess the closest contact I get right now is my dog and my birds, so…
Sue: Yeah, we are fortunate. We’ve got woods right behind our house, so, it’s very nice.
Sheryl: But that’s tricky too because of the Lyme and ticks and…
Sue: Yes, given what we’ve been through, we are absolutely paranoid about ticks. You can see as you’re leaving our garage, there’s just this bin filled with insect repellent. I mean, even our own yard.
Sheryl: The woods in the US. look nice. I mean, they look magical.
Sue: They’re beautiful, but Lyme Disease does completely change your brain about that. You know, if I see like a commercial on TV, like…
Sheryl: Right, you think of ticks.
Sue: …some of the allergy commercials. Yes. With like someone running through this beautiful field of flowers, I’m thinking, “Oh my God, I hope he’s wearing bug spray! Do a tick check!”.
Sheryl: And so, apart from your book – that can be bought on Amazon, is that right? Or on your website?
Sue: Uhm, it can be bought anywhere. So uhm, if you go to ‘Suzan’, and that’s s-u-z-a-n. So suzanjacksonbooks.com
There are all the links for all the different places where you can find it. So it’s on all the digital platforms, no matter where you are in the world. You can get it from your library. You can request it at a bookstore. All the online sellers have it, so.
Sheryl: Okay. And where else can we find you online? Websites, social media?
Sue: So like I said, I do have separate chronic illness.
Sheryl: Two Twitters.
Sue: On Twitter, let’s see, I’m at @livewithmecfs and that is also the name of my blog, but since I started it 15 years ago, it’s at livewithcfs.blogspot.com And I have a Facebook page associated with my blog which is also “Live with ME/CFS”.
My YouTube channel’s a little different because it includes both chronic illness videos, and videos about books and reading – my passion. The channel is “Sue Jackson DE”. That stands for ‘Delaware’ where I live.
So I love to read and it’s something I’ve always loved since I was a little kid. But I think being sick so much it was something I could still do, you know, after I got sick. There were so many things I couldn’t do anymore.
No, not, everyone can still read. Although, audio books are great for people who have trouble reading print. So, I listen to audios, I read print books. All kinds of genres, all kinds of types.
Right now, I’m running my big books challenge which I run every year. This is the 10th year of it.
Sue: So people just join in and set their own goals to read one or two, or however many they want big books during the summer, which means, anything 400 or more pages. This is, you know, again a passion to… This is grown so much in the last 10 years, and it’s a lot of fun.
Sheryl: That’s interesting.
Sue: I get a lot of pleasure from reading, and from sharing books with other people.
Sheryl: Yeah, that’s great. Okay, thank you Sue, for joining us today on the podcast. I really appreciate it, especially after everything you’ve gone through last night, and for waking up early for this.
Sue: I will definitely be resting extra long today.
Sheryl: Have a longer nap, for sure. This was like the big thing for the day for me.
Sue: Oh, absolutely. Well, thank you for staying up late for me.
Sheryl: Oh, it’s my pleasure. Yeah, it’s good. Thank you, and I will see you online.
Sue: Yeah, this was wonderful. Thank you.
Sheryl: Okay, great thanks. Bye bye.
Connect with Suzan Jackson Here:
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“Finding a New Normal: Living Your Best Life with Chronic Illness“
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