Sarah Keeley talks PCOS, IBS, fibromyalgia, ME, chronic migraine, and the choices we can make about mindset and chronic pain.
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Transcript
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
You might have noticed that we’ve got a brand new logo in your podcast app! I’m pretty jazzed about it, and it will eventually be followed by new graphics on instagram and a website refresh. So keep your eyes open for all these fancy updates!
We also received a new apple podcasts review this week from ericalumich, that said “Relatable and interesting! I love this podcast as I also have a chronic illness and with every story there is something to learn about others with similar or very different chronic illnesses. I think the questions and issues that we all have are really relatable from family to how we deal with our jobs.” So thank you Erica!
If you’ve been enjoying the podcast so far, then I’d be so grateful if you’d take a second to leave a review on apple podcasts, or share your favorite episode on social media, or text a friend who you think might need to hear these. I think our stories are important, and powerful, and I’d love it if you could help me share them.
Today I’m talking talking to Sarah Keeley about IBS, PCOS, fibro and ME, and chronic migraine. Sarah talks about what labels and diagnoses have meant to her at different times in her life and the ways that her mindset has shifted as she learns to live with chronic pain.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
[guitar riff]
Brianne: I like to start by asking about your health as a kid.
Sarah: Yeah. Okay. So I kind of was never really that healthy. Or I didn’t feel very well as a kid. I often had colds and flu and stomach bugs and all sorts of stuff. I mean, I was a fairly sort of energetic kid and I’d run around a lot. It wasn’t as if there was anything that you could pinpoint if we went to the doctor’s or anything. Except I had one problem that’s kind of linked to some psychological trauma that I had very young. Which was the, I would sort of unconsciously not go to the toilet, so I would hold that back. And at first, my mom, she didn’t really know what to do with it. And at first it was every few days I would go, and then it’s sort of slowly built up over time, to the point where when I was 15 it would be seven weeks between.
Brianne: Wow.
Sarah: Yeah.
Brianne: So like extreme constipation and digestive issues I’m sure become a related feature.
Sarah: Absolutely. Yeah. But I was very ashamed about it, so we didn’t really… I didn’t really go see doctors or specialists. Nobody knew about it except for my family and one close friend that had. School didn’t know anything about it, so I often had time off school. I often suffered with this kind of a lot of… or experienced a lot of fatigue, but it wasn’t so obvious that there was any… I don’t know the word… it wasn’t… by most people’s standards, I seemed to be a fairly healthy, well kid.
Brianne: Right. It didn’t seem like a health issue.
Sarah: No. Even though it really was.
Brianne: Yeah, sure.
Sarah: Looking back on it, I also… there’s kind of an added layer here which was that I was bought up in quite a strict religious environment, and a lot of the culture surrounding that was sometimes quite, “Let’s keep everything a secret.” So I didn’t feel like I was in an environment where I could talk about that. So it was a real secret for a long time.
Brianne: Yeah.
Sarah: And I always, as well, seemed to have more headaches than most kids. I needed glasses from quite an early age. I had eczema and skin allergies, things like that. And I kind of just struggled with energy as a kid, I would say. I was fairly energetic in my nature… really bubbly little kid, but I would have periods of… where I couldn’t get out of bed and things like that. But it was… so, there was an added layer to this as well, which is my mum actually has or had ME when I… when she was… just after she was pregnant with me. So I think because she… I was around… used to being around her with her needing to go for naps during the day and her working part time and things like that. So I think because I grew up around that, I was maybe more used to…
Brianne: It seemed almost… maybe not normal, but you knew that it was something that people experienced. It wasn’t completely foreign. Yeah.
Sarah: Yeah, exactly. So I think maybe that has something to do with why I wasn’t more concerned as a kid. And I suppose when you’re a kid, you’re, you know, less considered anyway. So I think I kind of really started to notice the problems getting more challenging in my early teens with secondary school or I guess… I don’t know what it’s called.
Brianne: High school.
Sarah: High school. It was, especially coming up to exam time, I found it more difficult to concentrate and things like that. And you know, the stomach and digestive issues. I was having were intense.
Brianne: And were you… how was your diet and food intake at that time? Cause I’d imagine that’s all kind of one system.
Sarah: Yeah, absolutely. I don’t think I was very aware of nutrition at the time.
Brianne: Sure.
Sarah: Yeah, and I don’t think it was a particular priority for my family. I think I had a tendency to comfort eat when I was upset or I also… like my mom would do, you know, meat and two vege and, fairly standard, typically British meals. But, I would… I was a sucker for chocolate and all that kind of thing. I wouldn’t dare drink water and all that sort of thing. So it definitely, the digestive issue… problems I was facing definitely had an impact on my diet because, you know, if it had been a particularly long time. I would feel really sick and nauseous and I wouldn’t feel like eating.
Brianne: Yeah. Putting more food in would not feel like the answer, I’d suspect. Yeah. Makes it hard to eat.
Sarah: Yeah, absolutely. And I would say… I wouldn’t say I was fussy or particular, but I… there was a lot of food that I was less keen on and so I wouldn’t eat. Yeah. I think I would just generally describe it as feeling pretty crappy really. Yeah.
Brianne: It just didn’t feel great. And there were a couple of things that maybe you knew weren’t typical, but not in a way where you were like, “Something’s wrong and I’m gonna figure it out.”
Sarah: Yeah. I know… I remember distinctly around the age… I was 15 the feelings of shame and guilt were getting quite strong, especially to do with the digestive problems that was having. So I remember searching on the internet and finding a forum for other people who had this tendency too, cause I was kind of subconsciously withholding it. So it wasn’t as simple as constipation because I could feel when I needed to go and, and all that kind of thing. But I would deliberately hold it back, but not deliberately.
Brianne: Yeah. Sort of choose not to, or avoiding it at least. Like an avoidant behavior?
Sarah: Yes, exactly. Yeah. So I… and the moment that I found out that I… this was not just me, I wasn’t, you know, I wasn’t alone and the other people had this thing that I had that was like a real moment of just change.
Brianne: Yeah, I bet.
Sarah: Yeah. I remember just… sat crying in bed the night that I found that forum. So the next day I went to, to school and I sought out a support teacher who I had a kind of good relationship with and I just basically opened up to her about, you know, 15 years worth of stuff.
Brianne: Yeah, just everything.
Sarah: Yeah.
Brianne: And that’s amazing, as an aside, that it’s like, it’s a secret. It’s a secret. It’s a secret, and it takes just one day of finding out that you’re not the only person and the floodgates open. That’s exciting in general for people. Like, people wonder, “Should I open up about this? It’s embarrassing, or it’s whatever.” And what a difference it can make to share your story. Holy cow!
Sarah: Yeah, absolutely. It was… probably that day more than almost any other in my life changed my life completely. And I mean, I’m still Facebook friends with that teacher, and I don’t think she probably realizes the impact she had on me. But from there I got referred to a counseling service in the school. And I started therapy with that counselor, and it didn’t take long for us to realize that there was a lot I was kind of metaphorically and literally keeping in.
Brianne: Yeah, keeping inside.
Sarah: Yeah. So I… it all seemed to start… the digestive problems I was having… when I was about four, and that’s also the time that my mum and dad got divorced. And around that time I didn’t remember this properly, but my dad… basically, I was meant to go off for just an afternoon and he kept me for two weeks. And there was… some stuff happened involving bathrooms and involving sexual abuse. And so… my mom said that, and I didn’t find this out until I was 15. So my mom said… she told me that I came back and it wasn’t the same little girl.
Brianne: Yeah.
Sarah: And from there things kind of progressed. So finding all this out of 15, and we did some memory work and self esteem work and all… I spent two years in therapy with this counselor, and sort of halfway through that I just stopped holding it. And it was… I can’t tell you where in the process, what did it, but the process of going through therapy helped me, you know, let go.
Brianne: Right. Wow.
Sarah: And so I got to the end of that process, and I’d overcome the thing that I never thought was possible. But I had, as you could imagine, if you continually stretch your bowels for 15 years, in those formative years you end up with consequences. So I was… I then… so I’m around about 17, 18 around this time, and I started having the opposite problem to what I’d had previously.
Brianne: Okay.
Sarah: I started having… just going to the toilet all day, every day. I was in agony, and I couldn’t understand what was happening cause this is something that I had never really experienced
Brianne: Right, that would be extremely jarring, I would think.
Sarah: Yes. Yeah, exactly. It’s not like I’d never had diarrhea before, but it was constantly for the space of a year.
Brianne: Okay.
Sarah: It also coincided with me leaving the religion that I was a part of, which kind of meant that I lost all my friends, the majority of people that I ever knew.
Brianne: Yeah, like your support network.
Sarah: Yeah, absolutely. And although the majority of my family were out of it already one of my sisters are still in it, so it was a real big time in my life. Everything just… lots was going on.
Brianne: Yeah.
Sarah: So I ended up going for lots of tests, lots of colonoscopies and all that fun stuff. And around that similar time, I was having really bad menstrual cramps and hormone… all sorts of stuff. So within the space of a year, and this would have been 2010, I just felt… I pretty much had just a year of tests. You know how it is… year of referrals. Oh, the one thing I should mention is when I was 15, they diagnosed me with depression.
Brianne: Okay.
Sarah: But… at the beginning, I really sort of clung on to that because I was going through a lot of stuff, but by this point, it didn’t feel like it matched what I was going through.
Brianne: Yeah. It didn’t feel almost relevant anymore?
Sarah: Yeah. Yeah. It, it felt like I’d had some trauma that I’d worked through, and I don’t know. Something about it didn’t feel quite right. So in 2010, the upshot of all these tests was I was diagnosed with polycystic ovary syndrome and IBS, irritable bowel syndrome. And at that moment it was like a bit of a light bulb moment again. I was like, “Oh my God, this is what’s wrong with me. Now I can move on with my life.” Little did I know.
Brianne: And it’s like, “I have labels now. There’s a club for me.”
Sarah: Yeah, absolutely.
Brianne: I think that’s also true with the mental health diagnoses of just like, “Now I know how to find the other people who have my experience.”
Sarah: Yeah, absolutely. Yeah. At the beginning, I mean, you’ve got to remember, I was 18 years old at this point, so I was all about the labels.
Brianne: Yeah. I mean, it matters. It is very meaningful. It’s understandable. Even if later sometimes you’re like, “Oh, that might not have mattered.”
Sarah: Yeah, absolutely. So I kind of went through… this was a bit of a tricky time for me, in that, I was free from the religion that I was, you know… I was working and going to college and learning how to be an adult. But I also, I felt like I had the hangover of a lot of my childhood still going… I don’t know, I suppose everybody probably feels like that at that age, but it felt intense at the time. So in 2011, which was a year later, I decided to go to university. I was gonna study musical and technical theater, and I was all ready for it. It was great. I was in a new relationship with my now-husband. And everything was coming up roses. And then within the first term… it was like, by Christmas, I started in September, by Christmas, I could barely make it out of bed. It was like I’d been hit by a train. It was really… waking up with a headache every morning. My legs were giving way underneath me. My eczema that I’d kind of had on and off through childhood was flaring up to the worst I’d ever seen it. I had to have it bandaged and wrapped. My stomach was a terrible, so basically I thought, “Oh my God, I’ve made a mistake coming to university.”
Brianne: It’s like, it feels like it’s too much.
Sarah: Yeah, it was… I think what compounded it was the fact that musical theater and technical theater degrees, drama degrees, it’s not like… I don’t know what college is like over there, but over here, if you’re doing a standard English degree or something like that, you might be in lectures for two days a week, and then the rest of the time it’s… you’re on learning but this was…
Brianne: And you’re sitting.
Sarah: Yeah but this theater degree was… you’re in five days a week, sometimes six, and if you’ve got a show on, you might be in from 8:00 AM till 10:00 PM every day.
Brianne: Yeah, it’s very intensive.
Sarah: Yeah. So…
Brianne: So it felt like you had… or it sounds like you’re going, “Okay, maybe I just did too much, or pushed too hard or whatever.” Like, “I have done this to myself.”
Sarah: Yeah, exactly. There was a real sense of. “Oh, well you’re putting yourself in this situation. If you can just fix it enough, then you’ll get better.”
Brianne: And can I ask… I have a short follow-up question and then a long follow-up question. So the short one is… so you described some of your symptoms of being stuck in bed, and it sounds like they’re kind of all-over full-body. Were you also having any cognitive problems or like brain fog?
Sarah: Oh, massively.
Brianne: Yeah, hard yes.
Sarah: I could not concentrate. I ended up having to have extensions on all my essays. I would speak, and the words would just not come out, or I’d say the wrong words or flip… you know, standard fog… brain fog symptoms. I would get confused about where I was. Yeah. All that kind of thing.
Brianne: So it was like a full body thing, it sounds like, every system appears to be affected.
Sarah: Yeah, absolutely.
Brianne: Okay. And then I have one more flashback question, sorry, before we keep going, just because I’ve mostly talked to people in North America. So when you were going through the referral engine, even before university to get the PCOS diagnosis and the IBS diagnosis, how was that within your system? So is it relatively easy to get referrals? Is everything covered? You know, just that kind of situation.
Sarah: Yeah. I mean, I suppose the first thing to say is we… I think the majority of people in this country are very grateful because most healthcare is completely covered. You just don’t worry about it. You have to pay for certain medicines and prescriptions. But other than that you can… you get the referrals, fine. Well the downside of that is it takes a long time. And I mean you would see your GP, which is like our family doctor, you can see them anytime. You would see them maybe five or six times over the course of a few months, and by the end of that they would be convinced to send you to a specialist. Now, things have improved since then, and it was particularly bad in the area that I was in cause it didn’t have a lot of… what’s the word? Uh, money.
Brianne: Just like, not a market for…
Sarah: Um… investment! Yeah.
Brianne: Okay. Yeah. So there’s not a lot of specialized services because the market isn’t really there, and then people end up traveling or whatever.
Sarah: Yeah. I think just funding was short really, and so the process of, say, me going to the doctor for the first time with cramps, and then the diagnosis of polycystic ovaries was about probably six months, at least. And even longer with the IBS because there’s more stuff that they have to go through. I think I went to see a dietician and, you know, had various cameras in places that I don’t want to think about, all that kind of…
Brianne: Lots of scopes?
Sarah: Yeah.
Brianne: And IBS is… that’s an elimination diagnosis, right? So they’re basically ruling out anything that they know of that could be causing problems.
Sarah: Yeah, absolutely. And the added complication to this, although we didn’t know it at the time, or did we actually? We might have known it. My sister has Crohn’s, so there was added stuff in the mix that was complicating things. But I think it really did depend on which specialist you saw. Some doctors are amazing, and you see them and you really feel listened to and they say, “Right, I’m going to take this seriously and I’m going to refer you to a specialist.” Others… I remember I went to one, and this was early on, and they said, “Oh, so what do you want me to do? Do you want me to stick my finger up your bum?” And I was just like, “Right, great. Thanks.”
Brianne: Yeah. “You shouldn’t have this job anymore.”
Sarah: No, exactly. So yeah, it was one of those processes that was slow, but I think it has improved since then. Definitely.
Brianne: Yeah, and it’s always hard. I thought this anyway, and I extra think this now that I’m… I think 45 interviews in or something, it’s always hard because of course they can’t… nobody knows immediately what it’s going to be, and this elimination process is complicated and every body is different. So all of that is true, and we’re impacted by our systems. And the quality of doctors that we find, or the empathy of the doctors that we find, I guess.
Sarah: Yeah, and that’s something that definitely changed depending on where I was. So I’m based in Yorkshire, in the UK, which is like right in the middle, and some parts of it are less affluent than others. And then when I moved to Cumbria, which was where I did my degree, it’s right in the mountainy region. And there’s a little more investment over there. So I found that I got taken a lot more seriously depending on where I lived.
Brianne: Yeah, that’s interesting.
Sarah: That’s a big thing in the UK I think.
Brianne: Yeah, I believe that. I think that’s… well here… so I’m in the States now, but I’ve also lived in Canada and in Canada, partly there’s a density problem. So when you live somewhere more rural… they’re just… you’re not near anybody. That’s also true in the States actually. But there’s just more people per square mile or whatever in England than there are probably in either of these countries averaged out. But it’s the same, if you can… here, if you can afford to go to a fancy city system, then you’re probably just going to get treated really differently than if you go to a walk-in clinic where they’re just trying to move people through as fast as possible because that’s what they have to do. Yeah. And that’s awful.
Sarah: Yeah. Yeah.
Brianne: Okay, so IBS is about elimination and then PCOS… and PCOS is a cluster diagnosis, right? So there’s a couple of different… I mean, there’s more than a couple. There’s many criteria, and you need to meet at least three or something. So, there’s different tests with that end in mind.
Sarah: Yeah. My… a couple of, well, a few years before, actually when I was quite young, my sister… another sister, a different sister. I’m one of six, so there’s a lot of us. But she was diagnosed with polycystic ovary syndrome. And so I kind of knew that we had something in the family, but I didn’t really know much about it. And the main indicator for me was excessive hair and the terrible periods.
Brianne: Right.
Sarah: But I had the scans, and I had the hormones. And the main thing for me was the hormone levels, the hair growth, the… I had some cysts, but they weren’t really troublesome or anything like that.
Brianne: Right. Yeah. And this is in general from PCOS usually there’s… nothing even needs to be done about them. That’s not what’s… unless you’re trying to conceive, they’re not the same as any… like when we normally think of cysts, it’s not the same. It’s an unruptured follicle. To put it extremely medically.
Sarah: Yeah.
Brianne: Okay. So thank you for that diversion. So now, you’re in university, and you feel like you’ve been hit by a train at the end of your first semester. And you think that you’ve done it to yourself.
Sarah: Yes. There was definitely an element of… I mean, I was so angsty. I was 19, and I was just frustrated, I think. There was a lot of anger there because everyone else around me was going out drinking. I was sharing in, um, we call them holes, I guess they’re dorms over there.
Brianne: Okay. Yeah. Where the students live together.
Sarah: Yes. Yes. Which when you’re experiencing that kind of chronic pain and fatigue is no fun. So that went on for… I started in September and by, I think it was March, I was looking into basically relying on a wheelchair. And I think… cause I spent a little bit of time away I had to come home and rest and figure out other ways to get my credits and do my assessments and things like that… because a lot of it’s singing. The ability to sing when you’re in… when you’re fatigued is pretty tricky.
Brianne: Like, to project… just thinking about that when you’re like, “I just want to whisper.”
Sarah: Yeah, exactly, and just being able to hold your breath in certain ways. You know, a lot of my… some of my symptoms, which I later found out were things like costochondritis… just breathing in deeply would leave me in intense pain. So, some things I could do, some things I couldn’t, but basically I finished my first year May/June of 2012. Basically feeling like, “what the hell is wrong with me?” And I’d gone to my doctors again and they’d mostly prescribed me with painkillers, so they weren’t really interested in looking into what was going on. It was mostly Tramadol, I don’t know if that’s a drug name or a… yeah, which I was on quite a high dose for quite a long time, and it really didn’t do me any favors.
Brianne: Yeah. And that’s, I mean, Tramadol absolutely helps people who it helps, but it also has not insignificant side effects, right?
Sarah: Yeah. Yeah, absolutely. So I was dealing with a lot of those. And then… so I came home for the summer and I basically spent the whole summer just recuperating. And then I’ve… come September of 2012 I felt re-energized and I was like, “Right, I’m…”
Brianne: “I’ve been sleeping for three months.”
Sarah: Yep. “I’m going to get back to it!” And I came back and it, it, things weren’t as intense but I definitely… I wasn’t reliant on the wheelchair anymore, but my pain was worse. So the headaches were probably worse. I was getting more migraines. The muscle spasms were worse. I think that kind of symptom was worse. I would get more colds and flus, and when I would get them, I would get sinusitis, and you know, my just general immune system was worse.
Brianne: Yeah. It just seemed like it was hitting you harder maybe than it hit other people that you know.
Sarah: Yeah. Oh yeah. I mean, freshers’ flu, which I don’t know if you guys have that, but…
Brianne: I don’t think we call it that, but I can imagine.
Sarah: Yeah. So everyone comes back after the summer, all from around the country, and they all bring their gems with them. And then the first two, three weeks are just a germ-fest,
Brianne: And at least in my college experience, also you get back and you’re like, “Oh, we’re not sleeping anymore, and perhaps are drinking a lot,” which neither of those things are doing the body any favors either.
Sarah: No, no. Exactly. So I was kind of… by this point, I think I had been referred to specialists, so I was waiting for appointments and things. And throughout my second year of university, I was put on more medication, but it was more preventative. So like, amitriptyline, I tried for a bit. I don’t know if these drug names make sense or…
Brianne: It’s okay. I always have to look everything up for the transcript anyway to make sure I spell it right.
Sarah: The antidepressant that they use for, for chronic pain and things like that.
Brianne: Okay.
Sarah: Gabapentin. Oh gosh, I can’t even remember.
Brianne: Which is another… gabapentin absolutely helps the people that it helps and it has intense side effects.
Sarah: Yeah. I mean, I think I had six lots of antibiotics in one year, just from the urinary side effects of Gabapentin, and I put on a ton of weight.
Brianne: Yeah, with Gabapentin? or with… who knows, but with the medication.
Sarah: Yeah with the medication, the eating to help with the pain, and the not exercising as much, not getting out there as much.
Brianne: Well, not being able to, right?
Sarah: Yeah, absolutely.
Brianne: And you had also said… I’m just thinking about this. So you were using a wheelchair for a while and for that, is that covered by anything? Is that a private purchase? Did you need a referral?
Sarah: So I had… I think it was the Red Cross, which are like a charity in the UK, and I think I had that one for six weeks, but that was a really just basic… kind of like a hospital…
Brianne: Like a loaner?
Sarah: Yeah. A loaner. And then my, this is a really weird connection, but a relative of the family twice removed somewhere had… was getting rid of their electric wheelchair.
Brianne: Oh, hey!
Sarah: Yeah, exactly. So I didn’t use it all the time, but just when I… anything that would require more than five minutes of walking.
Brianne: Yeah.
Sarah: I would use it for…
Brianne: Yeah, it’s a tool.
Sarah: Yeah, exactly. I had that for awhile. But that was mostly over the summer of my first year, between my first year and my second year.
Brianne: Yeah. Right. When you were resting a lot.
Sarah: Yeah. Yeah, absolutely.
Brianne: And so now in your second year, and they’ve given you all this medication. And then you’re also looking at… what kinds of specialists were you seeing for something so broad?
Sarah: I definitely saw… oh gosh, no, let me think. They definitely sent me to physio cause, you know, it’s totally the fact that I’ve got terrible posture, not anything else.
Brianne: Right. Or that you’re just deconditioned because you haven’t been exercising, and if they can get you exercising again, then you’ll be fine. Yep.
Sarah: Exactly. I think there was a rheumatologist somewhere in there. God, I can’t remember now. There was a lot.
Brianne: It’s okay. Also, I guess, which ones were meaningful? So you’re seeing everybody.
Sarah: Yeah. So the person who I saw in the end was… I can’t remember what kind of doctor he was, but he was basically a fibromyalgia and chronic fatigue specialist. He had a clinic. It was, I don’t know, 40 miles away or something. So I went, and basically he took a history. He checked my sore spots. He did the full works, the full exam and there and then said, “Right, yeah, you’ve got chronic fatigue, ME, and fibromyalgia.” Now I knew what chronic fatigue and ME was because of my mum, so I’d already kind of suspected that. But fibromyalgia was something that I wasn’t prepared for, or I didn’t really know what it meant. So again, new labels. Came home. I remember actually my uni friends… we all went for a day trip cause this specialist place was in a beautiful part of the world. Right in the mountains in Keswick in the Lake District. And so we made a day of it, and we were all being silly. And in the midst of this was this appointment where I was diagnosed. And I remember coming home and just being like, “This makes so much sense. This is all falling into place. I totally understand!” And so I went on a deep dive of the internet to find out what was fibromyalgia and all that kind of stuff. And more importantly at the time, “What drugs can I take that will fix me?”
Brianne: Yeah. “What can I do about it?”
Sarah: Yeah, yeah, absolutely. But there was… it kind of helped because it let go of the, “I’ve done something to cause my own pain.” But it also told me that I’d not done something to give me any result of… feeling that I had any power over my condition or however I was failing.
Brianne: Yeah. And especially with those two, there’s not really an explanation. It’s not like, “Oh, we know exactly why you’re in pain, or we know exactly why your energy is diminished. And even if we don’t know how to fix it, we can explain it. Like, no, we can’t explain it at all.”
Sarah: Yeah. I’ve just realized I’ve completely omitted like, uh, the main thing of my history. So when I was 17 I contracted… I was working in a nursery, a children’s nursery for like… I think I had this… it was supposed to be a year long apprenticeship, but I was actually there for three weeks because within the second week I’d got a chest infection, and within the third week I’d got chickenpox.
Brianne: Okay. So you had adult chickenpox, basically.
Sarah: Yes. Yeah. And I was covered. I was… I thought I was dying before the spots came out. I didn’t know what was wrong with me. I’d never been so ill, and that’s having had the history that I had as a kid. And the doctors told me that I was… I had to stay inside for basically like five, six weeks.
Brianne: Like quarantine?
Sarah: I couldn’t go out. Yeah. Quarantine. I was really, really quite ill. and from that point I just… that’s when the symptoms kind of slowly built up. After that point, I was not ever well again. Yeah. Like back to any sort of full health.
Brianne: And that’s interesting just because for so many people it’s mono. For so many people, they get a mono infection, which could be two different viruses, but it’s like… a virus happened, and I had an immune response and then it never… I dunno what… never faded kind of.
Sarah: Yeah, exactly. So… I can’t believe I omitted that. So when I went to see the specialist and he diagnosed me, he asked if I’d ever had any… when was this starting, what happened? And he basically said, “Oh, it was the chicken pox. That’s totally what did it.” So I spent the next year… my third year of university, I was managing things a lot better, but I still was very much labeled and I labeled myself as, “Oh, I’ve got fibromyalgia. I’ve got great fatigue. I can’t do that. I can’t do that. I can’t do that.”
Brianne: Yeah.
Sarah: And it protected me because I was… I somehow got to the end of it and I graduated. And I did really well. And I had really amazing friends… have, cause I’m still in touch with all of them. But by the end of my third year, I got to the point where I was like, “How am I ever going to work? How am I ever going to have a full time job? How…” I was panicking about what my future looked like and I realized that the thing that had a degree in, I definitely didn’t want to do, cause it would’ve… was going to kill me.
Brianne: Because it would be so physical no matter what. Yeah.
Sarah: Yeah, absolutely. So, my husband this… who wasn’t my husband then, he was… he’d changed his degree and was attending the same place as me with the same degree, but just a year later, so we had to stick around that area for an extra year. So I got a graduate internship with the careers guidance and student support teams. And it was great, but I was definitely quite fragile. And there was very much a sense of identity that I put forward as the first thing when people met me. “Hi, I’m Sarah and I have a fibromyalgia.” “Hi, I’m Sarah and I have chronic fatigue.” And there was more… I had switched medications, and I’d finally found one that seemed to help the most, which was nortriptyline, but it obviously wasn’t without its side effects. And things were sort of okay for a bit, but then… again, and this seems to be a theme with, with my health in general, it goes up for a bit and then I have a relapse, and I know that many people can identify with that. But we moved into kind of a little grotty flat, and we had a mold problem… had to throw out everything…
Brianne: Aaaaahhhhhh!
Sarah: By the end of… when we moved out because it was so bad.
Brianne: Okay, that’s awful.
Sarah: So that had its impact. I was… generally, everything was a lot worse. My headaches were worse. I had to reduce my hours at work from full time to part time, and thatwas a bit of an ordeal and it… I had to have counseling and generally I was feeling pretty… back to a feeling of being ashamed that I just couldn’t cope with, you know, “Why can’t I do this? Normal adults do this. I’m never going to be a normal adult.”
Brianne: Yeah.
Sarah: I don’t know what I was talking about but…
Brianne: But that’s how it feels. And how long were you in this apartment, and did you know there was mold there quickly or did it take a while?
Sarah: It took a long… so we didn’t really realize until almost to the end.
Brianne: Yeah. And then you left quickly.
Sarah: And we were in there a year. Yeah. Yeah. We will only ever going to be there just under a year. But that was enough time for it to kind of…
Brianne: Oh yeah, no. I know.
Sarah: Yeah. Yeah. I know from listening to your story as well. So we moved out, and my husband graduated in 2015. He got a job in Oxford, which… I don’t know how to quantify this, but it’s like 300, 400, 500 miles away from where we were living.
Brianne: Yeah. Far.
Sarah: Some massive distance. It’s the other end of the country. So we moved into a brand new, new build… apartment, and it was… I was working three days a week in an admin job. And I think within my first six months, I’d lost two stone, and I was walking, and I was doing stuff, and things were just generally a whole hell of a lot better. I was eating better. My headaches weren’t as bad. I was on this medication that seemed to be doing great things for me, and I’d also started coaching. So in my previous job in Carlisle as a graduate intern one of my mentors, a careers advisor said, “Hey, you seem to be great with students. How about… have a look at this thing called coaching. Go along to a free event.” So I went, and it was like a light bulb moment. I was like, “Oh my God, this is exactly what I want to do with my life. I need to do this.”
Brianne: Yeah, “This feels great.”
Sarah: Yeah, exactly. There was stuff about listening and the power of connection and rapport, and it was just… I was loving it. So I was studying for that, and it was like a distance course diploma. And everything was just going pretty grand, to be honest. So I had that for about six months, and then in 2016, early 2016, my work… my manager at work left, and then the assistant… we were in a team of three, and the assistant, a couple of months later, left, and so I was doing three people’s jobs at once. So I had to… well, I didn’t have to, but I’m sure I had to up my hours.
Brianne: Yeah, you were in a position to.
Sarah: Yes. Yeah, absolutely. Upped my hours, I went pretty much to full time, four days a week, four long days a week. And it sort of happened incrementally, and then we got a new manager. And everything was going okay, but my health was just getting progressively worse and worse.
Brianne: And did it feel like that tracked really directly with changing your workload?
Sarah: Yeah. Yeah, massively. We also moved house again cause the… we had some nightmare neighbors move in above us in the flat. And we moved to a house. It was in the middle of nowhere. I didn’t drive. So this commute time is an hour and a half commute each way.
Brianne: Yeah.
Sarah: And so I would be getting up at a quarter tp five or a quarter past five and then getting home at half six, seven. Sometimes eight.
Brianne: Yeah. Those are long days.
Sarah: And so it was just… I stopped doing my coaching. I put that on the back burner. I started eating more. It just… things would generally not going so great.
Brianne: Probably felt like survival mode. Right? You just… anytime you’re not working, then you’re just trying to make it until your next shift almost. Yeah
Sarah: Yeah, exactly. And the work… I was working as a PA, and so it was sometimes kind of stressful. My husband was working as a theater technician doing sound and that kind of thing, so he would often have really long hours. I was 300 odd miles away from my family. There was just a bunch of stuff. Oxford’s quite an expensive place to live, so we weren’t particularly saving tons of money. There was a lot of stress, basically, I think. And at that time… again, with the blame game, I was basically saying, “Oh, well, it’s my fault for being so stressed.”
Brianne: Yeah.
Sarah: So cut to… gosh, February last year.
Brianne: Okay.
Sarah: Yeah. February 2018. So we spent a year there. We decided… we kinda got to a point where it was all getting too much and I was going to, basically with the sickness that I had at work, I was going to be forced to either go full-time and make sure my sickness was better or…
Brianne: Yeah. Just Handle it.
Sarah: Yep. I had more counseling. I had occupational health referrals, all that kind of stuff. Or basically I would have to quit. And so I quit because I just didn’t want to go through that, and we moved back up North to… basically where my family is from near Leeds. I got a new job doing the exact same thing that I’d been doing, working as a PA in a university. And things were a lot better in… for the majority, so my mood was a lot better. I was a lot less stressed, but I still had a lot of the habits that I was kind of carrying over.
Brianne: Okay.
Sarah: So my sleeping pattern wasn’t great. I was eating all the wrong foods. We moved to from a place that was in the middle of nowhere, to a place that was right in the middle of a city, and so I had lots of access to bad or less healthy foods
Brianne: Or to all foods, probably.
Sarah: Yes. To all foods. Yeah. On demand. But somewhere over the space of a few months, I got back into coaching. I… on and off for about the last year before that I started trying paleo, and I found it helped, but I could never really stick to it. So I was on and off with that. Just before we’d move back up North, I had attended a three week long chronic pain management course with… in my local area, and that was really helpful. Showing you stretches and showing you the power of mindset with managing your pain and just talking to people who wanted to get stuff done but had to consider that pain.
Brianne: Yeah. “What would that be like?” I’m just thinking. It’s so different from going to a doctor who is trying to find out what’s wrong and then fix it as opposed to like, “Okay. Fixing it isn’t priority number one anymore. Living my life is priority number one.”
Sarah: Yeah. And that was a massive shift because in my head it was all about fixing it before that point. And I’d been trying all these medications, and things were not… didn’t seem to be working for me anymore. And so that was really a change, where I met people who were… had the same conditions as me. I’d never met anybody else with the same diagnoses. And we were talking about mindfulness every day. We were talking about gentle stretching. We were talking about, you know… Throughout the course of the past few years, I’d gone on weight loss management courses. I’d gone on exercises therapy courses, but they’d always felt… particularly the excises therapy I think the personal trainer that I had didn’t fully understand the limitations. He was like, “Okay, well, so we’re going to plank now for five minutes.” And I’d just be like, “You have no idea what this is going to do to me tomorrow.”
Brianne: Yeah, the post exertional malaise issue.
Sarah: Yeah, exactly. And so I became very resistant to the idea that I had any power in proactively managing any of my pain. So this course was a big change because it was all, “Right. If that’s what you can do today, then let’s half it, and then that’s maybe what you can do tomorrow and every day.”
Brianne: Yeah.
Sarah: So that was a big thing. So after that we came up North. Things were getting better. I was back into coaching. This was all last year. But I was at the heaviest that I’d… or most overweight that I’d ever been. And my job… the first six months were okay. It was full time though, because it was all I could get.
Brianne: Okay, yeah. I was gonna ask about that.
Sarah: Yeah. And so the workplace was really accommodating. They were like, “Yeah, you can have flexible hours. Yeah. We’ll get you an ergonomic keyboard. We’ll get you a special chair.” All the… you know, they were fantastic and really supportive. I think I even had taxis paid for to get me to work and back. It was only a five minute journey, but…
Brianne: I was going to say, how was the commute? So the commute was much better even despite… so longer hours than you had before, maybe? Or the same, but…
Sarah: Yeah, I think it was somewhat like three more hours a week to make it full time, but five minutes to work every day.
Brianne: So three fewer hours each day.
Sarah: Yes. Yeah, it was, it was a lot better generally, but six months in… by the time it got to September last year, I was just… Yeah, I was off sick a lot more. I was getting more and more migraines. My pain was more intense. And I was really struggling to lose weight. I just could not get it off, and I didn’t exercise. And I was finding it just all really too much. I’d had… I’d made the decision about a year before that, just before we moved up North, to come off all my medication.
Brianne: Okay.
Sarah: So, um, I was umming and arring and at this point. I’d found that basically off my medication I was in more pain, but I felt more myself. I didn’t have the brain fog as… I suppose I did have the brain fog, but I didn’t have the…
Brianne: You had more clarity, would you say? Even if it wasn’t perfect.
Sarah: Yes. I didn’t feel… I don’t know if this is the right term or if some people might identify with this, but on all of the medication that I was taking at one point, I referred to myself as a zombie. Because I felt like I wasn’t really present in my body, and I felt like I couldn’t really concentrate or think or… But it was different to brain fog. And I was more tired on the medication. So I’d had this year without medication, and it was a lot better in a lot of ways. I was able to concentrate on my coaching and things like that, but my pain was just getting to unmanageable levels.
Brianne: Right, and that’s the balancing act, I think. It’s really worth worth like just calling that out. Anybody who needs pain management, it’s like, “Okay, we have to choose. These are, these are the areas of like… energy, cognitive function, and then physical pain.” And if your side effects are making two of those worse while improving one of them, you’re like, “I have some tough choices to make.”
Sarah: Yeah, absolutely. And I’d been, I’d started to research a bit more of that over the last year. Things like mindfulness for pain management and doing the stretching and all that kind of stuff that I’d learned on the course. And I felt more… there was elements of like giddy excited me back that I hadn’t seen in years. I was doing my coaching. I was almost qualified. So September to December last year for me was a really key, crucial, confusing time. I was ramping up the coaching and getting more practice clients and almost qualified. I ended up qualifying in November. But my pain at work at my day job was getting worse and worse, and I was having more and more time off. So that kind of culminated. My headaches were the core thing really. I was having migraines two, three, four times a week, depending. That ramped up to five or six later on in the year. I was basically just a walking migraine.
Brianne: Yeah, it’s not sustainable to work like that.
Sarah: No, it wasn’t, and especially when your job is… I was a PA, so 95% of it was at the screen. And they tried screen gels and filters and all sorts of stuff, and I had sunglasses on in the office. It just wasn’t really doing anything.
Brianne: Yeah. Did you notice any triggers associated with that? Just because what you’re talking about is stuff that… people typically try to reduce their migraine triggers, you know? So were you able to… even if you weren’t able to fix it, were you able to identify anything like that?
Sarah: Absolutely. So I know for me… and this is… most of the trigger identification that I’ve done has been post this time, which I’ll kind of go on to talk about. But basically for me, really bright lights or a lot of time at the screen, really strong smells, chocolate, orange, certain foods, gluten, all the, the usual suspects. Yeah. To be honest… oh, sleep, hormones, things like that, but the biggest one for me… that I seem to have… no control over really is the weather.
Brianne: Yeah, like pressure and stuff.
Sarah: Yeah. Last week, we had a week where it was overcast all week with really dark skies, and just felt like it really needed to rain. And I had like twice as many migraines as I normally would have. So that’s the only one where I’ve found it really difficult to not only predict but manage because I can’t control the weather.
Brianne: Yeah. No. Obviously not. And something that has really struck with me… something that really struck me in a past interview, so something that has really stuck with me… two different expressions there… is that Kelly in I want to say episode 10, who has EDS, Ehlers Danlos Syndrome… one thing that she talked about was that she was very also impacted by the weather, and part of her work was stopping herself from going into almost like a… she didn’t say panic spiral, but as soon as she saw clouds outside, she’d start getting so much apprehension about the impact that it would have on her body that it almost became a self-fulfilling prophecy, which isn’t to say that the weather didn’t have an impact. But, and I think this can be true with any trigger, you get so worried that it starts to create its own downward spiral, and so things that you can’t control, like weather are so loaded because of the ways that they impact your body and also your mind.
Sarah: Yeah, absolutely. I can really identify with that. And a lot of the work that I’m doing at the moment is around my mindset as much as anything and my habits. So that if something crops up that’s unexpected then I’m not going, “Oh my God, what am I going to do about this? Damn it. I’m going to have a migraine. I need to replan this. I need to replan that.” One of the things that I’ve gained from chronic pain is that I’m great at organizing stuff, but sometimes it means that I put too much emphasis on that, and it gets… it hinders me more than anything. But the thing with migraines that I’ve… I spent all these years with my labels that I had grown accustomed to, and I thought I knew everything about what I had, and I had it rather than experienced it. And then I got referred to a specialist… another specialist in September or October last year because the headaches were just too much, and within… he was a neurologist and within… I’d seen neurologists before, but they would tell me I just had normal headaches, or I just had… my posture was bad or, or whatever it was. And he within 50 minutes of talking to me… and my husband came with me and was in the room with me, and we both came out and we were like, “Whoa.” Cause within 15 minutes he said, “Oh, I know exactly what you’ve got. I know exactly what’s wrong with you. You have chronic migraine.”
Brianne: Yeah. Okay.
Sarah: He said… yeah. He said, “So you…” He explained it to me as if you’ve got a switch in your brain, and it’s supposed to turn on and off all day, every day as you’re are processing information, sensation. And with some people, their tendency for this switch to stay on and keep on is hereditary or they have some sort of tendency, and then something triggers it. He said, in my case, something like chicken box, and then it just ramps up and ramps up and ramps up. So he asked me about my headache history. And by this point, I’d not really acknowledged this, but I hadn’t had a day without a headache at some point in the day since I was 17.
Brianne: Right.
Sarah: So for a lot of people… If I ever tell anybody that who asks me about what my most debilitating or the most challenging feature of my conditions to manage is, I always say my headaches because I can’t remember what it’s like to have a clear head. And so he was like, “Yeah, you’ve definitely got… you’re getting five migraines every week. This is chronic migraine.”
Brianne: Yeah.
Sarah: So he said, “So you’ve already tried all the medication that I would try you on. Let’s try Botox.” I was like, “Uh, say what now?”
Brianne: Yeah, “Excuse me?”
Sarah: I didn’t even know that it was a thing. I just thought about the stereotypical version of Botox.
Brianne: Cosmetic Botox.
Sarah: Yeah, absolutely. So this was kind of like a real point in my journey where I just went, “Right. So here’s another person who’s labeled me with another thing, and they’re giving me another thing of treatment. What am I going to do about this?”
Brianne: Yeah.
Sarah: And I went for the Botox. I had my first lot. It made me really quite ill in the first sort of week. I was throwing up and had terrible vertigo, and it was just not very pleasant. But after that, it didn’t really do anything
Brianne: So you didn’t… there wasn’t… for you there wasn’t an up side, it sounds like.
Sarah: After the first round of Botox, no. So then we got to Christmas, and I’d had tons of time off work. I was just generally feeling like I couldn’t cope anymore. And then I had two weeks off, and it was like… the only way I can describe it is [sings angellically]. It was… I just felt so much more rested, so much more me, I could focus on things. I went out and got pictures taken for my website. I was just feeling a lot better. And for me… when I think about my chronic pain or my illness, it has to be paired with mindset and how I’m feeling and mental health as well. I cannot separate the two, so my mindset and how I’m feeling is such a big part of me being able to manage my health. So I came back and I had one day at work after new years, and I had a migraine. And I hadn’t had one in about two weeks
Brianne: When you were two weeks out of the office.
Sarah: And I was two weeks out of the office and I just thought, “You’ve got to be kidding me.”
Brianne: Yeah.
Sarah: This is… there is something I can do here.
Brianne: Right.
Sarah: So I had about three weeks, not even that, two weeks off work. I was signed off, and I started to feel a lot better. I was just managing the pain better. My migraines were maybe two a week rather than six or five a week. And so I went on some training cause I was finally feeling… I was just about to go back to work, and I went on some training, and on the way back from the training… before my train journey, I happened to go into WH Smith’s, which is one of our stores here, and I picked up a book by Mark Manson, which was… oh God, sorry. My brain is just completely gone.
Brianne: I know who he is and I can’t…
Sarah: The Subtle…
Brianne: Oh, yeah!
Sarah: And it’s The Subtle Art of Not Giving a…
Brianne: You can swear. It’s fine.
Sarah: The Subtle Art of Not Giving a Fuck.
Brianne: Yeah.
Sarah: And I find reading quite difficult sometimes with the headaches and concentration and things, but I could not put this one down. I read it twice in 24 hours. Once with just me and once I read it aloud to my husband, cause I was like, “You have to read this.”
Brianne: You’re like, “I need you here with me right now.”
Sarah: Yeah, exactly. And then the next day I gave my notice in.
Brianne: Yeah because you were like, “It’s not working.”
Sarah: It was just… something about it spoke to me. Yeah. I was like…. the fear of not being able to pay the bills, the fear of not… my business isn’t ready to take off, this, that, and the other. I just thought, “This isn’t worth it.”
Brianne: Yeah.
Sarah: So I went in the next day and I spoke to my director and he was the most understanding about it. And he just went, “I can see this isn’t working for you. I can tell that when you’re well, you’re fantastic. You’re doing a fantastic job, but you’re not well.
Brianne: Yeah. ” That’s not what’s happening.”
Sarah: Yeah. “It’s not working for you and it’s not working for us,” and he said, “considering everything that you’re dealing with, it’s amazing what you’re able to do.” And I had a month’s notice to work off, and he said, “Don’t worry about it. Just go home. Rest, recuperate.”
Brianne: Yeah, “Go be well.”
Sarah: Yeah. So I was like, “Oh, okay. I was fully expecting to going into work for another month.”
Brianne: Yeah.
Sarah: So we handed in the notice in our house. This was February this year. We put all our stuff in storage. We moved into my sister’s spare room.
Brianne: Whatever works.
Sarah: Yeah. Exactly. Very, very grateful to her for letting us stay here. My husband quit his job cause he wasn’t happy where he was either. And since then, I’ve been eating completely paleo, like 98% of the time.
Brianne: Sure, I mean, yeah.
Sarah: Yeah, I know. Everybody needs some carbs sometimes, and I’ve lost just over two stone. I’m having maybe one migraine every week or two weeks depending on how things are going.
Brianne: Wow. That’s a significant change.
Sarah: Oh, it’s massive! I have been going to Aqua fit classes four times a week and Tai Chi once a week.
Brianne: And do you find that… so both gentle kinds of movements. Yeah, low impact.
Sarah: Massive. I mean, I used to love swimming when I was a teenager.
Brianne: Yeah.
Sarah: I had not been swimming in years because I just thought, “I can’t do that.” It’s one of those things I’d just, “I used to love swimming and now I can’t”
Brianne: Yeah, “It’s exercise. It’s out of…” yeah.
Sarah: Exactly, and now I look forward to it. I couldn’t go a couple of days ago and I was like, “Ah, damn, I’ve missed my Aqua Fit!”
Brianne: Yeah, you miss it.
Sarah: And I’m there with a load of… I’m probably the youngest one there by many years, but…
Brianne: Yeah. But it’s working.
Sarah: Yeah, it’s working and I feel more energetic. I went to… actually a few weeks ago, I went to a gentle keep fit class. It was not gentle. I was in bed for three days afterwards, but I just think you… I’ve got to a point where I’m learning that… and this might be an unpopular opinion, but this is the revelation that I’ve been having recently, which is what I was resisting from a lot of doctors and specialists that I saw years ago, which was, “Are you exercising?Are you eating healthily? Are you practicing meditation and mindfulness. Are you stressed? How are you managing your pain?” I used to take that as an affront and a blame thing that I could fix myself if I needed to, if I wanted it badly enough.
Brianne: Like an accusation.
Sarah: Yeah, the whole, “it’s all in your head,” thing used to… and it still does to an extent, drive me mad, but now I kind of embraced that because there is an element of, “It is all in my head.” There’s an element of, “I have control and I can do things and make decisions that impact me in a positive way.” And so now a lot of what I’m doing with my business is coaching people to realize what they actually want and how they have power and control to get it. And the people that I work with… they’re not… they’re very much… I’m basically coaching myself.
Brianne: Yeah, that’s… I think that’s how people get into coaching is that’s what they want to do.
Sarah: Absolutely. Because I found that was a bit of a gap for people who… they’re well enough to work. They’re well enough that they… have ambition. They want to get going. And I’m not saying that people with more chronic or more debilitating illnesses don’t have those qualities at all. But the… I couldn’t get any sort of financial welfare or benefits and I… but I was still not healthy or well enough to work full time.
Brianne: Right.
Sarah: So how do we support people in that gap?
Brianne: Yeah.
Sarah: And I find as well that a lot of people with chronic pain, or this is my personal experience, I suppose, is that it becomes what you talk about all the time. And so to provide a space where they don’t have to talk about it, but just know that I understand.
Brianne: Yeah. It’s not a secret that we’re avoiding because that’s the opposite problem of people who absolutely don’t ask you about it and you’re like, “Oh, they’re uncomfortable and don’t want to hear it, and they want to pretend that I’m fine.” It’s not that space.
Sarah: Yeah. But like, “Okay. So you have these symptoms. You have this condition. You manage it in this way. What… who are you beyond that? Who are you because of that? What can you do? What do you want to do? What’s changed? How has it changed?” And I’ve been going through that process myself. So for me, it’s sort of ultra-rewarding because I learn as much as they do as I’m going through that.
Brianne: Yeah, definitely.
Sarah: And the more and more I talk to other people and hear all their experiences… which is, you know, why your podcast is so fantastic is because the more I hear those stories, the less alone I feel and the more empowered I feel.
Brianne: Yeah.
Sarah: And I think that’s… for people who, potentially that control might have been taken away or… I think that’s an amazing thing.
Brianne: Yeah. It’s such an isolating experience, and when you don’t have… I mean, there’s so many different things I guess… don’t have a way to connect to other people. Don’t realize that other people are out there who you’ll relate to. There’s so many barriers and especially if you’re someone, like many people are, who are in the position where you don’t leave your house very often, I am often in that position… it totally changes your world and you… Yeah, and as you start to connect and find other people, you’re like, “Oh, this is okay.” Okay might be the wrong word, but like, “This is a way of living, and I can find out how to make it work for me as well as it’s going to.” Something that really strikes me also about the way that you’re talking about… I’ll say lifestyle changes. So like exercise and mindfulness and diet is… I think one of the things that can make it so hard when doctors ask about it or healthy family members ask about it or whatever is… It takes a lot of work. It takes a lot of time and energy and space to figure out those habits. And I think… I agree with you that I think that they can all be very helpful. Although especially with exercise, it’s… finding the exercise that works for you is… oof, right? It might just be gentle stretching. Gentle stretching might be the thing that your body is up for, and that is fine. But I think if a doctor, for example, asks about it like, “Oh, have you been exercising?” It’s like, “Are you kidding me? How are you supporting me in building an exercise plan that works within my life? If I’m trying to work… I go to work and I’d come home and I get into bed. My life does not currently allow me to exercise, and it…” Making the space for those things, and with food… Oh my God. I’ve been thinking about food a lot lately because it’s expensive. It’s expensive to try paleo or keto or AIP or any of these things, and it takes a ton of time to figure out what you can eat and how to cook and all this stuff. And if you could try a diet, the way that you can try a medication, which is that a doctor… especially… so PCOS is an easy example, right? PCOS is thought to be tied to insulin resistance, and so some people find keto to be really helpful for managing PCOS. And so if you’re diagnosed with PCOS and your doctor’s like, “Okay, so I think that the first step should be dietary before we try drugs, because a lot of people could manage it with diet.” Not just, “Here’s a meal plan,” but literally like, “Here’s frozen meals for three weeks and it’s going to be covered by your insurance, or it’s going to be subsidized. And we’re going to make it as easy for you to try a diet as it is for you to try a medication.” Which isn’t to say that the mental and all of the other stuff around diet… because I know that’s there too. But it’s just… I think there’s a certain lack of awareness when people recommend those things about how little energy that people have to begin with. And I’m not saying that you’re coming from that position, but like it’s so, ugh.
Sarah: Yeah. Well, I was… it’s funny that you mentioned just pretty much everything that you just said, cause it’s so unbelievably on point. One of the things that… so a couple of days before I handed in my notice and I read that book, I had been to the doctor’s and had another round of blood tests, and I was borderline diabetic. I was on the border for being diagnosed.
Brianne: So like pre-diabetic.
Sarah: Well, no, I had been pre-diabetic and I was on the…
Brianne: On the line? At the top.
Sarah: Yeah, exactly. And I had this process of just going through a real shame spiral. I had a complete… I would… just had a moment, “I can’t tell my family cause I’ve done this to myself.” You know, all the negative self talk that I could’ve given myself. I did.
Brianne: Right. Yeah.
Sarah: And then I got myself out of that and I thought… hang on, this is… I think I read that book and then I moved house and I thought, “This is something I need to try and be willing for it to fail.” But the amount of support that I had and have had and still have with the paleo thing is… I would not have been able to do it, or I would have really struggled to do it by myself. So we’ve been… basically with my sister, her long-term partner, my brother, and my husband, all five of us in a cozy house together. And my brother-in-law has been doing paleo with me, and we’ve been cooking new recipes. And when I say we’ve been cooking, I’ve been watching him cook new recipes.
Brianne: Yep. Sometimes that’s what it takes.
Sarah: Yeah. We’ve been experimenting with things. And I think the… for me, the thing that’s helped me with it has been just not trying too much to do all the fancy stuff that you can do and get all the crazy ingredients or all the specialized stuff, but just appreciating what a handful of almonds can do for me or what broccoli can do for me or some… Yeah. Basic ingredients. Yeah. Just plain stuff, and I’m not saying it’s easy cause it’s really not. And none of this… I think what you said about the effort that all of those lifestyle changes and habits take, it’s… if I was working full time… and I work on my coaching business, but I’m able to do that when I’m feeling well, and when I’m not feeling well, I’m able to rest. I would have really found this challenging to do when I was working. And I think it’s very easy, or maybe it’s not easy. I don’t know. I’m making assumptions there, but a lot of doctors, healthy people… they sort of say, “Oh, well, you know what you need to do. Just just do it. Right?” Like you were talking earlier, if you’ve got 10 of those things that you could try, but you’ve only got energy and space in your life and time for maybe one or two.
Brianne: Yup.
Sarah: Then you prioritize. If making paleo muffins for breakfast every morning isn’t feasible, then it isn’t feasible. So if… I think it’s getting better with things like places that you can buy… eat out at and that kind of thing is getting better. You can, in this country, you can buy things like Cougetti Spaghetti, which is like zucchini noodles.
Brianne: Yeah I was gonna say “Oh, Zoodles!”
Sarah: Yeah, exactly… which I know you could never get a few years ago. So it’s getting better, but the effort that you need to put in is still high.
Brianne: Yeah. And high effort… and it’s great when you can find those more convenient options, but convenience comes at a cost is also the piece of it. Right? So, yeah. And I’m so struck by this too, because I also… I had been working in an office and then I started working remotely and then I ended up stopping working remotely. And okay… well, if the only way that you can make space to care for yourself is by basically slashing your income, then you’re also… your choices change. Of course they do. It’s like, “Oh, it was cool to have disposable income and no time or energy, but now I have a little bit more self care and much less disposable income.” So it shifts things.
Sarah: Yeah that’s exactly where I’m at, at the moment, and today I managed to get out and go to a local little park that’s 5, 10 minutes, walk away. And the sun was shining, and my sister came along and brought a camera and we took some pictures and I never had the energy for that before. And if I did, it was something that I had to like micromanage into my day, into my week. And before, we might have done something that costs more money than going to the park, but I’m enjoying what I have now more. And it takes courage to do that. I think it takes… if we could tap the strength that people who have chronic pain conditions and use that as a resource in the world, the world would be… we wouldn’t have an energy crisis.
Brianne: Yeah. People are making it happen. And then also I personally am a strong proponent of universal basic income. And this is why. Because I just think… I know there are so many people out there who are in that space of wanting to do it, and if you have dependents or if you don’t have a safety net, you don’t have a family that you can lean on, which is so many people, you’re going, “Okay, it’s going to take me a long time to figure out how I can logistically do that.” And sure, you can downsize. You can move in with family if you have that option. Yeah, and not everybody does. I would really love that for everybody who needs that space to be able to take care of themselves, which we’re not there yet. And in, certainly the UK, Canada, and the States, the countries that I’m familiar with, the safety net of disability, whatever it’s called in each place is not providing that right now for most.
Sarah: No. I mean, the director of the place that I’ve just left… he was saying. “Well, I can’t believe… doesn’t the… does the state help you? You’re entitled, you have all this.” And I said, “Have you seen the forms for those? It’s, ‘Can you lift a pint of milk above your head? Can you walk 15 meters? Can you climb the stairs unaided?'” I’m very fortunate that at this point, I am well enough to do all those things with relative ease on bad days, sure, not so much, but…
Brianne: But nobody’s paying you to do those things.
Sarah: No.
Brianne: So that would be great if that was a job, but just demonstrating that you can lift milk.
Sarah: Yeah, exactly. Yeah.
Brianne: And also certainly I know just the legal challenges of it is… most people have to go through at least one appeal in order to qualify, which is so much energy and money usually to work with an advocate or work with a lawyer or whatever. Like, okay, that’s a whole other mess basically. Okay. So we’ve gotten to the present for you, and I feel like we’ve covered so many things as we’ve been going through it. Are there any big themes or ideas that you have that haven’t come up yet that you can think of?
Sarah: That’s a good question. I think for me… so I wrote a blog post on this yesterday, and I was, as you do, mulling it over, and for me, figuring out where I actually gain energy… not just what depletes my energy, cause we spend a lot of time thinking about that, but what actually builds my reserves back up? What helps me feel more resilient? What helps me… because I think that’s a resource that you have to reflect on, and that’s so powerful. And for me, something similar, just so simple, like having a playlist of music that just helps me feel more awake and alive and present. Having… migraines willing, having flowers about, as long as they’re not too strong smelling.
Brianne: Yeah. Low-scent flowers.
Sarah: Yeah. Not too full of pollen. Spending time with company who understand that I may not have showered for three days. I may have no bra on and hand warmers. And I may be covered head to toe in wooly things. I may spend half the time scratching my hand because my eczema is flaring up. But just sit and talk to me for a bit.
Brianne: Yeah. Just don’t worry about it. I’m just living with it. Let’s be here.
Sarah: Yeah. And I’ve got a couple of really close friends actually from university, and I think because they saw me pretty much at the least well I’ve ever been, they just get it. I think tapping into those energy resources is something that I’ve taken longer over the process of my healing, to really understand about myself for a long time. It was all about what it took from me and what I’d lost. And actually just reflecting on what’s got better, how I’m a better person for it, and how I can… how I can make choices.
Brianne: Yeah.
Sarah: The power of choice is a big thing for me.
Brianne: Yes. And I think something that really sticks out for me about that is some things I find absolutely like… actually doing these interviews, I talk about it that way too. Doing these interviews gives me energy. I am always able to do them, and that is such a gift for me because it totally… I get super focused and I’m in it and I love doing them. And then there are other things that will sometimes really… I don’t even know what word I was going to use there, but… juice me up, like get me excited. So I am currently at a stage of my life where I’m going to a lot of weddings. We have like four coming up or three coming up. We had four last year, and I love weddings, I really do. And for me, because of whatever… I don’t live where I grew up, I don’t live where I went to school… we have to travel for most of them, so it’s an ordeal and it’s at least a four-day ordeal, and I always need to rest after. But also when I’m in that moment of, “We’re at an event with people that we care about, and we’re celebrating.” Doing that, I love. And so there is often a tension and learning to accept that and try to navigate it, of going, “I’m making a choice to be here. Sometimes I’m making a choice to have alcohol, which I know for my body has more consequences than it does for other people.” I can choose these things and enjoy this evening and everything that I get from it, and then I can give myself permission to rest after without feeling guilty. So shutting off the feedback circle that says, “You took a bunch of risks and now you’re paying for it,” to be like, “you made a choice because it meant something to you, and now you can like allow yourself to rest.” And that isn’t to say that I’m always good at it, but reframing how that works is really important, I think.
Sarah: Yeah. Yeah. I… for people who may be listening, I am nodding throughout the whole of that because it is very, very reliable. Just because we… I like to think of responsibility and the responsibility to have to myself and how I can be proactive with my body. But I like to think of that also with the lens of… I have a responsibility, to just be real with myself and human and part of that is making… I don’t like the word mistakes because they’re not, but making choices that I maybe know the rational part of me maybe says… the logical part of me maybe says… do you know what? I have the same thing, alcohol, “Maybe that doesn’t… you don’t react to the best of that.” “Maybe when you climb up this hill on this sunny day cause you really want to reach the top. Maybe you will be in more pain tomorrow for that.” But the, to me, responsibility and choices about being able to make those decisions and not, like you said, have that feedback loop that says, “You caused this.”
Brianne: “You’re bad.”
Sarah: “You’re bad.” Yeah, exactly. Yeah. And that to me… it’s a practice. It’s a skill. It’s a thing that I have to balance. Yeah.
Brianne: Yeah. It’s… I don’t know. Maybe it starts to come naturally. I’m not there yet.
Sarah: Yeah. I don’t know if… I don’t know if I ever will, but I think that’s part of the fun.
Brianne: Yeah, definitely. Well, thank you so much for taking the time to talk to me. Especially… it’s late where you are.
Sarah: I know, I’ve just realized it’s gone really dark.
Brianne: Yeah, yeah. No, that’s happened to me. Thank you so much for sharing, and opening up about both your history, and then your current… what’s working and what’s not, and all of this stuff about the day-to-day. I think that’s what’s so important.
Sarah: Thank you.
Brianne: Yeah. Okay. I’m going to stop recording.
[guitar riff]
Thank you for listening to episode 38 of No End In Sight!
You can find Sarah on instagram and twitter @focuswithsarah, and you can find me on instagram and twitter @bennessb. You can find this show on instagram @no.end.in.sight.pod. I’m still slow on posts because I’m still behind on transcripts, but that’ll pick up again once those pick up again, which should be soon. I know I keep saying that, but I also keep meaning it!
Next week I’ll be talking to a woman with type one diabetes, celiac, and colitis, so make sure you subscribe in your favorite podcast app to find out when new stories come out.
As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.
And finally:
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. One of these days I’m going to get to work on some spring and summer patterns. I’d love it if you checked us out at digitalartisanal.com.