Episode 98: Kara Fernstrom: Doer of Things.
Kara Fernstrom
Kara Fernstrom has led an interesting life. From addiction, to chronic pain, to C-PTSD and anxiety, she has had many reasons to throw in the towel, but hasn't. Instead, she has chosen to push through each hurdle and try to approach life with curiosity and love. She dedicates each free moment to unraveling the mysteries of wellbeing, and sharing with other people who share in the suffering life so often offers. Far from perfect, and sometimes cripplingly insecure, she wakes up each day and does what she can to make the world a slightly more tolerable place.
Social media and contact information:
Website - www.theconquestofbliss.com
Podcast - The Conquest of Bliss
Linktree - Kara Fernstrom ♡ | Linktree
Podcast Transcript:
Damaged Parents: [00:00:00] Welcome to the Relatively Damaged Podcast by Damaged Parents where pained exhausted, scared people come to learn. Maybe just, maybe we're all a little bit damaged. Someone once told me it's safe to assume 50% of the people I meet are struggling and feel wounded in some way. I would venture to say it's closer to 100%. Every one of us is either currently struggling or has struggled with something that made us feel less than like we aren't good enough. We aren't capable. We are relatively damaged. And that's what we're here to talk about.
In my ongoing investigation of the damage self, I want to better understand how others view their own challenges. Maybe it's not so much about the damage, maybe it's about our perception and how we deal with it. There is a deep commitment to becoming who we are meant to be. How do you do that? How do you find balance after a damaging experience?
My hero is the damaged person. The one who faces seemingly insurmountable odds to come out on the other side hole. Those who stare directly into the face of adversity with unyielding persistence to discover their purpose. These are the people who inspire me to be more fully me. Not in spite of my trials, but because of them, let's hear from another hero.
Today's topic includes sensitive material, which may not be appropriate for children. This podcast is provided for informational purposes only and is not intended as advice. The opinions expressed here are strictly those of the person who gave them.
Today, we're going to talk with Kara Fernstrom she has many roles in her life. Sister, daughter, cousin, step sister, aunt, and more. We'll talk about how she struggled with pain exhaustion and fear and how she has found health and healing let's talk
Kara Fernstrom. I am so good to have you on Relatively Damaged by Damaged Parents today to talk about a struggle. Thank you so much for coming.
Kara Fernstrom: [00:02:10] Thank you for having me. I'm honored that you asked me to come on.
Okay.
Damaged Parents: [00:02:14] I'm just our pre-interview. Conversation was fantastic. And I'm super excited to have this conversation with you about, well, literally pain, exhaustion and fear, I think are your top three. If, and if I remember correctly, it's fibromyalgia and sarcoidosis.
I know a lot of people are familiar with fibro but if they're not, could you explain it? And could you also explain the sarcoidosis for us?
Kara Fernstrom: [00:02:41] Absolutely so fibromyalgia. I mean, to be honest, last, I talked to a doctor about it. There's not a ton known about what causes it or whatever, but the, key symptoms that a lot of people suffer are chronic pain often muscular pain and it's sort of, Kind of like a Phantom pain thing, like, because you don't really know where it comes from.
We not Phantom, like it's not real, but Phantom, like it's not directly caused by something that's known.
Damaged Parents: [00:03:05] So it's not relatable to an injury. So it's unspecified as to where the
Kara Fernstrom: [00:03:11] Where it's coming from. Exactly, exactly. Like, there's been some research that said that it's possibly like nerve defects or whatever causing it, like nerves misfiring and stuff like that. But at this point, like I said, last time I talked to a doctor and not just Google. There wasn't a lot known about what causes it.
And then it also has something called tender points, which means that. If you are pushed, like, like the best way I could describe it is if I'm pushed in certain parts of my body that seem rather innocuous and like very gently. It feels like it's bruising me or that it is already bruised and someone's pushing on a bruise and it hurts on.
I remember when I was a kid, my uh, I would get really upset with my brothers and I'd say that they gave me a bruise they gave me a bruise and there was never a bruise, which I just, I would think is funny looking back now because I was convinced there was, and they thought I was just trying to get my brother's in trouble.
And then the other key. Big thing with fibromyalgia is a, they call it brain fog and it's often like a similar to chronic fatigue disorder. Basically it just, it's probably the most frustrating part of the illness is the. Inability to get clarity in your thoughts or your processes.
Like even when people come in and say something to you, I mean, there can be times where it looks like I'm listening and I just have no idea what someone said or I'll read a book, like five pages of a book. I'll have to go and read it over again because I think I've digested it, but it just doesn't sink in.
And then with sarcoidosis, sarcoidosis is a little bit different. Actually it's a lot different. But oh, so the nice thing.
about fibromyalgia, just to go back to that really
Damaged Parents: [00:04:39] Oh,
there's a nice thing.
Kara Fernstrom: [00:04:40] there is when it's compared to sarcoidosis. And that is that as far as I know, as far as I've been told, there is no like the prognosis is that it will probably stay, but unlikely to kill me
which is kind of dope. I mean, I'm not really into dying, so it's kind of dope. And uh, the sarcoidosis on the other hand is really unpredictable. It's another one that there's not a lot known about. And so what happens is it creates granulomas, which are. They're like they're, they're not cancerous, but they're growth of inflammatory cells on different organs in the body.
So mine in particular was discovered in my chest cavity. So my lungs and lymph nodes around my lungs. So there's some scarring on my lungs from it and stuff.
Damaged Parents: [00:05:24] Is that something you have to have surgery for?
Kara Fernstrom: [00:05:27] I didn't have to have surgery. It's, so it's a bit of a weird one because. It can just go away or it can just take you out, or it can go away and come back.
Bernie Mac, do you know who Bernie Mac is?
Damaged Parents: [00:05:36] Yes,
he's a comedian. Yeah.
Kara Fernstrom: [00:05:38] Yeah.
Yeah.
And he died of a heart attack as a result of sarcoidosis. Not a super commonly known fact if you don't have sarcoidosis. And most people would have heard of sarcoidosis on House because like every second episode he's like, is it sarcoidosis?
The way that it's manifested in me personally is like I said, so I had it in my lungs and chest, and then that has cleared up. And what's interesting is that there have other symptoms you probably can't see, but I have these like bumps on my nose that are like growths that came out of nowhere sometimes I get
like burns on my face out of nowhere and they're not explained by the fibromyalgia. So I assume they're caused by the sarcoidosis. And the thing is I really try to avoid Googling sarcoidosis too much because it is daunting. It can attack your brain, your heart, your liver, your kidney, any, any organ, your skin, your lungs, obviously lungs is probably the most common.
So that's the rundown of it. So I've got like lots of health issues that I'm not a hundred percent sure where it comes from. And there is treatment for it, but a lot of the treatments have a lot of side effects that I, I fear. So I try to avoid any treatment that requires me to take things every day.
I prefer ones that I can take as needed. So
that's, that's one down.
Damaged Parents: [00:06:49] Yeah. those both sound challenging and scary.
Kara Fernstrom: [00:06:53] They very much, I mean, the, the fibromyalgia, I'm not as afraid of as I used to be like, I mean, sometimes it can be. I not sure what the right word is. I want to say depressing, but it's not quite the right word. But it can be like kind of soul dampening. So know that it's not likely to ever go away and that, and that everybody and their dog has a treatment that works, but of course, none of those treatments have actually worked and then they shame you for it and stuff.
So that's kinda the, the crappiness around the fibro side, but the sarcoidosis gets very, very scary, very fast and suddenly a lot.
Damaged Parents: [00:07:26] Yeah. I would really like it. If you could talk a little bit about that shame.
Kara Fernstrom: [00:07:30] Okay.
Yeah, like since I got sick and I think to know that probably plays into it is that I'm on disability here in BC, which, which means that it's government funded. I. Do you not get very much money, but I get a little bit of money every month to support myself.
And as a result of that before I was doing the, my businesses and stuff, that's what I would tell people when they would, ask what do you do for work? I'd be like, I don't work because I am on disability and, and then they would start demanding to know. And then, what happens is a lot of people have heard this treatment or that treatment, there's folic acid and then there's going vegan and then there's going carnivores.
And then there's a million different Ideologies around how to fix fibromyalgia is there's some people that don't even believe that it's a real illness, which is bizarre, but I know that there was a period where they were just diagnosing everyone with fibromyalgia, which kind of screwed things up there.
And like I said, when I talk about the shame, what I mean is that people will make these suggestions to you unsolicited, and you try to be graceful as you can, but unfortunately, a lot of people, when you don't accept their suggestions or when you don't, agree, or you say that you've already done it, they really it's this really weird thing where they play this.
Narrative of, I don't care about being sick or that I want to be sick, or I just don't want to work or any number of other interesting things. And now that's lessened a lot because I don't have to tell people as often that I'm sick because now when people ask what I do, I have an answer for that.
That's not disability right.
So that, that helps. That helps a lot. But even still, when people find out, I mean, even like there must be once a month, at least where someone that I love very much will send me things in it's, a hard thing to manage because that they just want to help.
They just want what's best for you. And they want, you know, they don't want to see you in pain. And like, I appreciate that, but it's also a little bit insulting that the implication is that I'm not doing everything I can to manage it.
Damaged Parents: [00:09:22] Which is super painful because it sounds like there are people that you love and care for.
Kara Fernstrom: [00:09:27] now. Yes, previously it was a lot of randos.
Damaged Parents: [00:09:30] and I think that that's hard with any disability. And I think there's this mentality out there that there is a fix. And how has that. Helped or hurt you in this journey?
Kara Fernstrom: [00:09:48] Actually interestingly enough I actually just recently read something about why people are tend to do that. And it was just internet speculation. So who knows if it's accurate, but it made a lot of sense to me. And it was that people are often afraid of becoming ill themselves. And the fact that a lot of these things are.
At best random, but, or possibly, I mean, at the very least they're caused by things you can't control like external traumas and stuff like that, or just completely random and people desire control. And so the idea that someone has an uncontrollable illness that came out of nowhere is really.
Scary to them. And so they kind of put that lack of control in their own lives, on the people that are suffering. And I read that and I found that really, really helpful. But to answer your questions that only kind of answered your question whether or not I've found that sort of thing, helpful. It's comforting to know that people want me to be well, it is challenging to know that they don't trust me with my own wellness.
Damaged Parents: [00:10:51] Ooh, that's hard. And painful. I just was stumped. I'm just stumped for a second here because I was just, my mind was shifting into, when you started having all these problems and you started going to the doctor, you started recognizing, did you also have that same mentality of, oh, I will get fixed.
Kara Fernstrom: [00:11:13] That's that's a really good question. There's a lot of factors that just like bombarded my brain right now. So I started getting sick with something when I was really young. Like I I've had asthma since I was 12 and stuff, but that's not what I mean is I remember I was like 17 years old and went to the doctor and I was actually.
Underweight at the time. And he told me, no, your joints hurt because you're overweight. And I remember like being crushed and not going to the doctor at all and then when I finally went back to the doctor, they misdiagnosed me with rheumatoid arthritis. And that was hopeful sort of, but I think, I don't know if I've ever really fully, believed it'll get better.
I have moments where I'm like, I'll be able to manage it, and I can find different substances or, tools or practices, you know, I'm hopeful that I can manage it so that it's not. Life consuming anymore, but I don't think that I ever really, like, I think I always knew that I was just sick and like I said earlier, a lot of it, could have come from trauma.
The jury's kind of out, but there's a lot of research into the fight or flight connection, the sympathetic nervous system connection to auto-immune diseases and similar diseases. And so maybe it's comes from there and stuff, but like I said, I think. I think I was just relieved to know that I wasn't crazy. when I started my journey, I was relieved to know that for it to be acknowledged.
Damaged Parents: [00:12:37] Yeah. So before you even found out what you had and what it looked like for you and you were going to the doctors and I'm thinking, pushing to go to work and to do the full-time thing. And how did that work for you?
Kara Fernstrom: [00:12:52] poorly. like I said, I started getting sick around 17, but I'm an overworker if you will. my boyfriend often asks me how the workaholic tastes. Cause that's just my style. I just enjoy working and I've always been like that. So when I was early twenties and late teens,
it did get worse. I think it's possible that the medications they had me on for RA might've made it worse, but I don't know. Um, Because in my early twenties I was able to do it. And then when I was around 23, 24, My ability to be reliable, started to decline significantly. I needed to take a lot more sick days.
I was unable to work for. And like, you have to understand the symptoms. Aren't just pain. There's also like embarrassing gastrointestinal symptoms. And. All sorts of other symptoms that I didn't understand what was happening. Right. And so I would take the days off work instead of going into work, feeling the way that I did and not sure if maybe I had something contagious and all of this other stuff.
And it was soul crushing to go. I remember I went for a review at this job that I still look back on and really love. And I went for this review and I had, it was out of five, but I have five in every category except for reliability. And that was at like two and I just wanted to cry. I just remember feeling like I can't help it.
I want to be reliable, I think of myself as a reliable person. But, I mean, what am I supposed to do? Right. And at the time, like this was right before my diagnosis, even the misdiagnosis. And so at the time I couldn't even give them a reason, you know, and I remember that feeling. and then I ended up leaving that job for another job that paid really, really well.
And it had a, I did 17 days in a row for like 10 hour days or something. And that was it for me. That was when I went on disability because I did that shift and everything fell apart. My entire like my entire health just, just fell apart. And then, so I was put on disability and I just kept trying, I kept trying to work at trying to work at trying to work and every time.
I tried to work, something would happen. And, and it sucked because every time I tried to work, I would try and do a lower and lower stakes job because I didn't want to be unreliable to people who needed me. Right. So I remember I started working at Dollarama. I don't know if you guys have that, but it's like a dollar store.
And I started working there, which is like the lowest stakes job you could possibly have. Right. And And I was, I was doing it. And then that's when I finally got diagnosed with sarcoidosis because I started coughing blood and like my health, like. No matter what I did. I just couldn't do it.
It like I, my will was there, but my body just wouldn't do it. I ended up right before I moved out where I live now, working this amazing job with this incredible woman who was fully on board and understood my health issues and was okay if I needed to call in for a whole week straight. It was Okay.
with setting weird hours, even though most of her workers will work full time.
And that worked really well. And then I moved out here and started doing the whole, my own ventures thing.
Damaged Parents: [00:15:49] Yeah. What you said about being able to work though, is I think there are a lot of people with disabilities who have capacity and want to participate. I mean, I've really heard this desire to, you know, you had fives in every category except one, and it was reliability. And you thought of yourself as reliable and you wanted to give back to society and you wanted to participate in yet.
It just, it just wasn't gonna work the way that particular corporation, or probably most corporations are, or employers are set up for people with disabilities. So what would you say would be some things that might be able to change that will be helpful so that people like you and other people with disabilities like me.
Could participate more so and not because I think there is shame also with having to be on disability.
Kara Fernstrom: [00:16:47] absolutely. Yeah.
like, just super quickly, I'll answer your question, but just super quickly, I think one of the most frustrating things is. Entitlement that other people have when you're on disability to know your life story. And it feels like a point of shame. I definitely relate to that point so much.
But as far as what could change, I mean, on a systemic level or a corporate level, I think that if people. Would stop viewing people as disabled or who are disabled as useless. That would go a really, really long way. If people would seek out, like seek out how to understand. How someone adds value to a group or a corporation or whatever thing.
That would go a really, really long way, because like I said, I mean, I had fives in every category, if they had figured out a way to be flexible and create an environment that I could do as I was able to then, I mean, I could have gone really, really far. And so on a systemic and corporate level, like I said is.
If we stopped only valuing people based on these really oddly specific parameters. That would go a super long way and look at people like, Okay.
where is their value And how can they contribute? And, treat people like individuals, because even people that aren't disabled still have individual situations where they work better and individual situations where they work more poorly and the amount of effort to put in from the beginning, looking at that.
Compared to the amount of effort, expended to try to fit people into boxes they don't fit in is it's easy math. You're, you're much better off to get good people that work well like that you can work like individualized people's work plans would go a super long way. But unfortunately, as we were talking about earlier, the.
Power we have over corporations and systemics staff right now is minimal. So what, someone can do when they're personally affected by it, someone like myself, I think just. Being creative allowing yourself to like shedding the idea that you only have value, if you're productive by the standards of the, American Workday or Canadian Workday, shedding, that idea is the first thing and I mean that's easy to say and hard to do, so it's, it'll take exploration and stuff. But from there. Once you've sort of shed that idea, it opens up the world to you because once you realize that you have inherent value for being a human being and that the chances of you existing are astronomical. So there must be some reason once you kind of look at that.
You realize that there are things you can do. I mean, yeah. Freelance is really hard, but the nice thing about freelance is that you can set your hours. You can set the parameters within which you work, same thing with podcasting and all sorts of other things. There's a million jobs out there. They
Damaged Parents: [00:19:41] quoting air quoting that.
Kara Fernstrom: [00:19:43] Yeah.
Damaged Parents: [00:19:43] Air quoting jobs.
Kara Fernstrom: [00:19:44] I was Air quoting jobs.
because I don't really like the terminology because I think that it paints a picture of what we currently value as the perfect standard of adult productivity. And I think that it's a little silly,
Damaged Parents: [00:19:57] so at this point, you've got disability in, you're also doing some things on the side to add to that disability. And you don't have that judgment so much because now you don't, you can say, oh, I'm a podcaster or, oh, I do this, and it sounds like that gives you a tremendous amount of freedom.
And takes some of that shame because there's, and I want to say this, it seems like the shame really comes from when you have a disability or when one has a disability that they are wrong. Not that there's just a mistake somewhere, but that just existing is not okay. And the other thing. I heard you say was about like the corporate setup and how you kept going from different, lower and lower to lower and lower jobs.
If you will, the dependability, you didn't have to be there and I'm getting there. I will get to a question and just trying to,
Kara Fernstrom: [00:20:54] No, I'm loving it. I love it.
Damaged Parents: [00:20:55] to get through the process here, because I know there's a question there about how.
And I'm thinking of pacing and how you shifted to less, not demanding jobs, but reliability wasn't so high. And it was almost like that industry accepts the fact that the reliability is not high. So then it makes it okay. Okay. Here's where I was going. A lot of people with the disability, I think a lot of people think, oh, well, they can, they also, there's the other side of the coin.
They can also just do this or they can do that. And they think that the capacity is there for a four day or a week when maybe they're stopped. So they already pay a price for having the disability. And then they pay an additional price on top of that for not being able to earn the same amount of income, because they already have a disability.
And yet having the disability is expensive. And I would think it's also expensive in your. Neck of the woods.
Kara Fernstrom: [00:21:49] Yeah.
I mean, for sure here in Canada, it is less expensive because we don't have medical expenses on top of everything else, but there are exceptions that need to be made. And I totally agree. Like I definitely want to put the disclaimer there that I don't. Like that I chose. Like, I don't, I don't want to say I don't like me choosing to work lower dependability jobs.
I don't think that that was the wisest choice. I think that that was a choice made out of pain and suffering and just trying desperately to figure it out how to regain my sense of value, as a human and my thoughts on that have changed an entirely really, like, I just, sorry. I, I get a little bit scattered but I have my sister-in-law, she doesn't work.
She hasn't worked pretty much the whole time. I've known her. She's not technically on a disability, but she very clearly has certain struggles and stuff, and she. Is one of the biggest blessings in my entire life. She will run to the store and grab things or she'll, just show up and show up for me and make me feel good.
And she just takes care of the men, not just for me, but for tons of different people, the many little things that we miss, because things are hectic. In to me, it's like, that's huge value. And I think it's kind of bull crap that she doesn't get paid for it. Like it's weird what we pay for and what we don't.
And it creates this narrative, like you mentioned, where people feel like they don't have, like, that their existence is wrong. And, and that makes me want to cry. Like it makes me want to cry. There's I have never, in my entire life met a human that didn't have. Incredible value, even just for interacting with me.
Like, you know, there are people who've just changed my entire life just by saying hi, just by smiling at me. And I know that doesn't seem important to a lot of people from certain mindsets, but that's what makes the world go around is connection. And we need humans for that and jobs have nothing to do with it.
But anyways, sorry, I didn't mean to get all tangenty it's just something super close to my heart.
Damaged Parents: [00:23:54] No, thank you. I really appreciate that because I think there's a greater truth that a lot of times we forget all of us, even me sometimes.
Kara Fernstrom: [00:24:04] Oh Yeah.
I'm guilty of it as anyone. But to go back to your question about being on disability, being expensive, abso-freaking-lutely, it's super expensive because even without the medical costs, and I really feel for people who are stuck with medical costs, but even without that, Like there's more travel to doctors.
We have to pay parking here at hospitals, which is super weird, but I mean, we have our medical scabbard, but the parking is not. But we also, like, there's just concessions that have to be made for diet and for this and for that. And there's just a billion little things and yes, I do the podcasting and I do the freelance art, but I mean, even that in combination with a disability I'm well below the poverty line, which I mean
I've gotten extremely good at living on very little, which has been, I mean, will hopefully work to my advantage when the big blessing I'm waiting for comes.
Damaged Parents: [00:24:53] We can always hope. Right.
Kara Fernstrom: [00:24:55] Oh, yeah. Yeah. I got faith for days. Um, But yeah, it's super expensive and it's exhausting and challenging endlessly really.
And like another kind of factor. So my boyfriend and I we don't technically live together because we're not allowed to, so that's. sucky we're not allowed to be in a marriage like relationship or else they take away all my benefits. So we don't technically live together. But we spend a lot of time together , and like, that's one of the things that I've found really, really challenging is getting like, he never treats me like a burden, never.
I still hear it in my head all the time. Intrusive thoughts saying like, you're weighing him down. He can't go hang out with his friends or he can't do this. Or he can't do that because of my disabilities. Right.
Because I'm in pain or I'm tired and he doesn't want to just like, leave me at home and go take off and have fun.
That's another challenge and like learning to be okay with the sort of the cost to other people. is really hard.
Damaged Parents: [00:25:55] What do you mean by the cost to other people?
Kara Fernstrom: [00:25:57] Well, for me personally, like I said, like when I say cost to other people, I just mean, I guess. Okay. So I, I think it's easier to recognize the costs that we come with than it is the costs that other people do, because they don't seem like costs to other when it's other people that we love.
Right. But for me, it's like, Okay.
so. A really good example. Years ago, I was going to Disney World with a bunch of friends years and years ago and well before COVID and I remember waking up and I could barely move and I had to decide if I was going to stay back. Or if I was going to go and be really slow and really obviously in pain, right.
Because it's obvious that like when it's really bad, it's, there's not, you can't pretend it away. You know, My face gives me away. So either way, either situation just by being there with them, I was kind of like, I was kind of put in a no win situation as far as like other people. Like, I couldn't reduce that because either they'd feel guilty for leaving me behind or they'd feel guilty for dragging me along, at the end of the day, though, it's just something that you have to accept. Is just like anyone else healthy people come with their costs too, they really do it. Just doesn't feel like that. When, when it's you,
Damaged Parents: [00:27:11] Yeah. And the pain and suffering. Is really hard when you want to go do something, when you want to participate and then backing off and saying no, or going ahead and doing it. And then the price you pay from trying to manage the pain or they pay actually from you trying to manage your pain. Right.
I'm just thinking down the road. I mean, that's hard. I mean, my kids will tell me, mom, don't. I don't want to deal with you later, if you try and do too much
Kara Fernstrom: [00:27:45] well, and I mean, like, yeah, it's funny because. That was one of the things I don't know if you ever struggled with this. Cause I don't know much about the C.
Damaged Parents: [00:27:55] CRPS complex regional pain syndrome, I've heard it compares relative to fibro actually.
Kara Fernstrom: [00:28:03] Oh, okay.
Damaged Parents: [00:28:04] it's just, the pain is different. So it's like, it varies. The pain varies, like all those different signs on the doctors. It could be any of those in one day, all at the same time, I could swell, I can go my temperature changes.
They're just, it's very unpredictable to say least
Kara Fernstrom: [00:28:24] that sounds terrible. , and like, I'm not, I'm not trying to interview here at you here or
Damaged Parents: [00:28:28] It's
Kara Fernstrom: [00:28:29] worry. But, the thing that I found. Interesting was like, so when I first got diagnosed in fibromyalgia is obviously like a similar in the fact that It's not visible, it's an invisible illness.
Right. And so it's funny because that day at Disney World was the first day that I was like, It's obviously not all in your head. You want to go to Disney World and I did end up going and I did end up regretting it um, because I'm really bad at pacing myself, but
Damaged Parents: [00:28:57] That's I think that's the hardest thing for anyone. Who's a go getter like you. So how do you do that now? I mean, this is years and years ago. Have you gotten better?
Kara Fernstrom: [00:29:07] Mostly? Yes.
I still slip up. I definitely still slip up It's an embarrassing amount of regularity, but I do a lot better than I used to. So it used to be that I would just push through it, push through it, push through it. Like I said, until I ended up in the hospital with blood coming out of my throat and stuff like that, or until I end up like where I can't move for three days and stuff like that.
And so I don't do that anymore. Now I have like, especially in the last couple weeks I've been really focusing on it. So a little bit about sort of my journey with the whole work from home thing I've been doing a lot in the last month or two, like before I was sort of doing the minimum and I was just kind of coasting and getting things going, and that was fine.
Like it's my own thing, so it doesn't really matter. I don't have a boss. Right. I could pace it, but then I decided that it was something that really meant a lot to me. So I was going to work at it. And so I started working really, really hard. And then I crashed a little bit and then started working hard and crash a little bit and it's gone back and forth quite a bit.
And I realized, yeah, I just can't. And so I've given myself parameters where it's like, I work on, regardless of it's the podcast or the the freelance design stuff. I work between nine and four, my time, Monday to Friday. And if something falls outside of that, it's okay. Occasionally. But if I am not doing more than one thing outside of those times.
And I really have to be okay with it. Like I really have to sit on it. If someone asks me to interview on a Saturday, whether it's for my show or someone else's, whatever, you know, I really have to sit with it and decide if I can do that. and I've really just been working on being mindful of my own needs.
And as we were talking before, like I said, is even during those hours, making a concerted effort to check in with my body, check in with my mind and go, do you need a break? Do you need a break? You know, And it's really, really hard because I don't want to take any breaks. I just want, like, if I, if I had my way, I really find a lot of happiness in working.
Whatever that looks like too, it's almost, any kind of work. And so like if I had my way, I would get up at seven and work until seven and then have a couple hours off and go to sleep and do that every day because I freaking love it, but I can't do it. And so we've got to practice radical acceptance and practice mindfulness.
And the thing that motivates me to continue that even though I have a really strong desire not to do that the thing that motivates me is I just remind myself that taking a break for 15 minutes now could buy me. Three hours in two days, taking a break for an hour now could buy me an entire extra day in my work week because some days like this week, I had to take two days off.
I slept most of those two days. I had to take a whole bunch of medications, which I don't love doing like, like pain Medic-Aid diet. It's like, I don't know if they're called the same thing there, but there's these muscle relaxants different things. Cause otherwise like my, my muscles were just, we'll just tense up.
Like just like hyper, like just can't relax them no matter what I do, even when I'm sleeping. Yeah,
Damaged Parents: [00:32:04] So you were putting your hand in a fist, so it, it
Kara Fernstrom: [00:32:08] yeah. Yeah. So I was like, it's, it's like get super hard.
Damaged Parents: [00:32:12] Okay. So your muscles would totally contract your hand would go into a fist and you couldn't open it or anything
Kara Fernstrom: [00:32:17] Well, I could open, my hand about this much.
Damaged Parents: [00:32:20] Okay. So not quite 100, so probably 75%.
Kara Fernstrom: [00:32:24] And I can't relax the muscles in my arms and stuff like that when it gets bad. So I ended up, like I said, I ended up having to take two days and that was really, I know the cost from last week and not pacing myself better. Right. So I'm, constantly trying to figure out how to reassess and rebalance and it's hard.
But the biggest thing is that for the first time in my life, like we were talking about a little bit earlier for the first time in my life. I feel like I'm doing something that has value beyond just my own life. And
Damaged Parents: [00:32:55] you're giving back to society, what society is given to you in some way, or, or just because you're here on earth. Is that what I'm hearing?
Kara Fernstrom: [00:33:05] It's not so much just I'm on here on earth. Although I do sometimes find myself in all of existence and all that stuff because I'm dorky as heck. But, but specifically like, just
like I said before, my, my stuff isn't, pay well and it's not this big, huge thing, you know? Um, People, it helps people. And that makes me feel like it's worth it and makes it continue to motivate me and stuff like that. And it's, like I said, regardless of what it is, it's just been, I've found a lot of motivation in finding better ways to love the world.
Damaged Parents: [00:33:41] Yeah. And giving back in a way is loving the world.
Kara Fernstrom: [00:33:47] Yes. Exactly.
Yeah.
Damaged Parents: [00:33:49] and also what I heard was getting to have the human experience or getting to participate in the human experience. It's not that you're not that you're totally not, non-functional having a disability or being disabled it's that you have function and it just doesn't look like everyone else's.
Kara Fernstrom: [00:34:10] A hundred percent, a hundred
percent.
Damaged Parents: [00:34:11] being gentle with yourself as really hard. I know it is for me. I from what you're describing is extremely hard for you too.
Kara Fernstrom: [00:34:19] Absolutely. I've done a lot of studying on different areas of wellness, specifically mental wellbeing and stuff like that. And when someone asks me like the number one, things that I would advise people to look into, or the number one things that have made a difference for me, it has been a study in self-compassion re-parenting that kind of thing, sort of separating yourself from yourself and finding ways to be kind to yourself in the same way that you would to people you love.
Because even if you're not at the place where you love yourself yet, and I kind of go back and forth, sometimes I really love myself and sometimes I'm like, Hmm. Um, And, and even not loving myself, like I, one of the phrases, and I don't remember if I heard it somewhere, if it just came to me one day, I don't know.
But it's like, like I try to think of myself instead of thinking of myself as me. I think of myself as my best friend's best friend. And it's like, how would your best friend feel that you're treating their best friends? That way kind of harsh, right?
Damaged Parents: [00:35:19] Oh, cause I've heard the saying about, would you treat your best friend that way or would you treat your friend that way? And, and so that, that takes it to like another level.
Kara Fernstrom: [00:35:29] Yeah.
Damaged Parents: [00:35:30] Yeah. My best friend would be freaking pissed if I was treating their best friend like that.
Kara Fernstrom: [00:35:35] Exactly. Exactly. And that's really helped me is to go like, ideally I love myself for me. Ideally I take care of myself for me. And some days that's the case. Some days I've got to do it for everyone else. And I think that.
that's okay.
Damaged Parents: [00:35:50] Would you say that on those days, when you feel you have to do it for everybody else that maybe deep down inside part of it's that you just want to be that for everybody else on that day like you want to be 100% and to be that way all the time.
Kara Fernstrom: [00:36:08] Well, I would love to be a hundred percent and be like, you know, be good all the time and be happy all the time.
That would be ideal, especially, like, I would love to only add value and never have any cost for anyone in my life that would be freaking fantastic. I would be so happy, but I also don't know that That's something that I can achieve.
Maybe, maybe I try not to be close to things. But like, I just, mean like, self care, like let's say, the pacing thing that we were talking about. Some days I do that because I know that it's something that I value, being able to continue to do what I do is something that I value.
And so some days that's enough. Some days I wake up and I'm like, Mmm, like, oh my God, I hate myself or whatever, and on those days, I go, okay. But you still have to take care of yourself because otherwise someone else is going to have to, or otherwise so-and-so is going to lose out this way and I just lean on my love for other people when I don't have enough for myself and I've found that through practicing it that way, there's been more and more days that I wake up and I do it for me.
Damaged Parents: [00:37:11] That's awesome. That's really beautiful. I think that's fantastic. I don't know what it's like in, in Canada and I think it's getting better in this state.
I'm just wondering how often you felt that with the disability. Your needs are an afterthought to the rest of society and how you cope and deal with that to the best of your ability. If they, in fact, that's the case.
Kara Fernstrom: [00:37:34] Got you. Got you. Yeah. so yes, that is absolutely something that happens in Canada. Or at least my experience has been that the needs of a, I mean, the talk of how corporations treat disabilities is a great example. And even just everyday people, especially invisible disabilities become even less.
So, you know, There's not a lot of concessions made for people who don't fit in the boxes. How I cope with that. Is, I mean, honestly, this is going to sound silly, but how I cope with almost everything is that I think that the answer. To fixing all of this different stuff is love, kindness and love for one another.
And so when I started to get overwhelmed and I started to get really sad and I started to, do the whole like pity party, like thing, which I think we're all apt to do. Sometimes when I started to get in that place, I try to step back and I go. Okay.
how do you fix it? And when the answer is love and kindness, you know, sometimes I work on the show because that's kind of the point of the show, but sometimes even when I'm not doing that stuff, I find someone to compliment.
I. Tell someone, I love them. I just try to practice love and kindness because it makes me really mad and I have no power over it. And it gives me a little bit of power to know that one person being a little bit happier and a little bit healthier gets us closer does that sense
Damaged Parents: [00:39:02] yeah, I think what you're saying is that. By using loving and kindness and sharing that with others, it gets us closer to recognizing that we're all more similar than we are, that we're all here for the human experience to whatever and whatever that looks like for that person. They're full of human experience, which is different for all of us.
Kara Fernstrom: [00:39:25] Absolutely. And like I said, I think that's pretty much what, I mean, I always fall back on. We're more similar than we are different. and like I said, when, and, and I don't know that coping mechanism is going to work for everyone, but I think it's just finding something that you believe will help in the grand scheme and just doing that, it just makes you feel a little less powerful.
Damaged Parents: [00:39:45] Yeah. I like that. Finding something you believe will help. Because so much, there's so much happens in that belief. I think too.
Kara Fernstrom: [00:39:53] And like I said, for me, it's love and kindness. I think that's going to change the world. And so that's what I do, but I don't think that that has to be someone's driving factor. It's just finding something that makes you feel a little less powerless and focusing your energy there.
Damaged Parents: [00:40:07] Yeah. So maybe then it's more like being responsible for who you are and how you're going to behave and how you choose to respond, because that goes back to your power. If I could be confident in who I am and know that I'm going to live by these values, then whether or not my disability exists doesn't matter.
Is, am I picking up on that? Right.
Kara Fernstrom: [00:40:29] Yeah. And, and I mean, it's not even just about the disability so much as the crappiness that the world can throw at us, cause like the original question was about the. The way that disability is treated and there's not enough concessions made. And how do we cope with that? And, and like I said to me, whenever it's a question of something that's bigger than me and requires, a lot of people's involvement and stuff like that, it's like, Okay.
I'm powerless.
And that feels super crappy. Like it feels, deflating. And so it's like, okay, what can I use to inflate it? And like you said, like just taking control of what, how we behave or how we interact with things, doing one small thing, regardless of what it is that makes you feel less powerless without ideally without hurting someone else,
Damaged Parents: [00:41:10] Okay.
Kara Fernstrom: [00:41:11] um, Can, can make a world of difference because then it's like, oh, okay.
Like I don't have to focus on the big, scary world. I can just focus on this little thing, but I do have power.
Damaged Parents: [00:41:22] Yeah, one person at a time. It sounds like,
Kara Fernstrom: [00:41:24] That's yeah, that's, that's my jam is I like to,
Damaged Parents: [00:41:29] I love it. I
Kara Fernstrom: [00:41:30] I I love to do like little things and I mean, they're all like leek dorky, and they don't matter too, too much, like going to seven 11 and , you know, giving them a dollar. So the next kid can get their Slurpee free or some silly little thing that I know will just make someone a little happier, even if it's like teeny tiny
Damaged Parents: [00:41:46] It's fantastic because it's bringing connection and, you know, I think that there was a study somewhere. That it spreads just like social networking. when the next person smiles, you know, they infected, we'll just put it in COVID terms, right?
It goes up exponentially, but what do you call it?
Kara Fernstrom: [00:42:06] I was going to say, I always call it the world's best pyramid scheme.
Damaged Parents: [00:42:09] Yes. Oh, that's a great description. I love that. I love that. Okay. Usually at the end of my podcast, I asked for three things, three tips or tools or things you want people to walk away from this podcast with you may or may not have already mentioned them. So it opens it up to maybe your three most favorite things that other people might be able to do that can make a difference in their life.
Kara Fernstrom: [00:42:33] Okay. So I'm sure that other people in this podcast I've mentioned it before, but looking into mindfulness and meditation is the number one thing that I would recommend getting to know your own mind helps you to navigate it better. Number two, I would say connection , even if it feels silly, even if it's someone on the internet and not in person, cause COVID is all crazy.
just look for connection. And number three is I would say find something that you love. For me, it's creating things for a lot of people, it's things like dancing, but find a form of expression that you can do. That you love that sets your soul on fire, or maybe, maybe doesn't yet, but, will, and, and when you do that thing, the third thing, I think it's really important to know that everybody's bad at things to start.
So don't, I try not to be discouraged if, you decide you want to draw and you can't draw because guess what, everybody who can draw ones couldn't. So that's my that's my recommendation.
Damaged Parents: [00:43:33] Those are fantastic. I'm so glad I got to have you on the show today. Kara, I loved getting to have a conversation with someone else who struggles with a pain disorder.
Kara Fernstrom: [00:43:44] I really loved this too. And I'm so honored that you had me on and so excited to get to know someone. That's just, you had such a big heart, man. It's fantastic.
Damaged Parents: [00:43:55] Thank you for listening to this week's episode of Relatively Damaged by Damaged Parents. We really enjoyed talking to Kara about how she learned to pace and cope with her body's limitations. We especially liked when she taught us how she thinks of herself as her best friend's best friend. To unite with other damaged people. Connect with us on Instagram. Look for damaged parents will be here next week. Still relatively damaged. See you then.
