Chronically Living and how to make the most of it

Lupus and Cannabis, with special guest Sarah Eni

November 29, 2020 Kelsey, Sarah Eni Season 1 Episode 24
Chronically Living and how to make the most of it
Lupus and Cannabis, with special guest Sarah Eni
Show Notes Transcript

My guest this week is Sarah Eni, a lupus warrior who shares her experiences living with lupus for the past 15 years, and what she has found to be helpful for her including diet changes, self-care, and cannabis.
In this episode we talk about:

  • lupus
  • kidney failure
  • holistic approaches to health
  • benefits of diet
  • self-care strategies for mental health
  • medicinal uses of cannabis and cannabis legalization

Guest Bio:

Sarah Eni is a lupus warrior of 15 years from London. She's tried a lot of medications, many remedies, and found various ways to live her life. "I am so grateful for our online community where we can share our experience." - Sarah.

Follow her on Instagram: @chia.jpg
Follow her on Twitter: @ChiaTwote and @SarahEniTwote

Kelsey Harris:

Welcome to the chronically living and how to make the most of it podcast. I'm Kelsey Harris, a chronic pain warrior here to inspire hope and strength to the spoonie community, get ready to lift each other up and find ways to live the best life possible. Hi, everyone, welcome back to another episode of chronically living and how to make the most out of it. Today's guest is Sarah Eni, a lupus warrior in cannabis advocate who's going to share her story with us. So welcome to the show, Sarah.

Sarah Eni:

Hi, thank you for having me.

Kelsey Harris:

All right, thanks so much for coming on. Um, so I thought we could just start off with you telling us about your lupus journey so far, you know, kind of starting with when your symptoms started and going from there.

Sarah Eni:

Okay, um, so I started when I was about 10 or 11 years old, and now 25 a bit to the story. So 10 or 11 years old, like 10. And I was at a school choir thing, and I was eating my tinned spaghetti and I suddenly got a rash on my face. And that was just the first weird thing of many weird things to happen. Then, the next week, I had a slice of pizza, and I had another rash on my face. And then there was a rash on my palms as well. It was kind of like a blotchy red rash that they couldn't really explain at the hospital until they heard that my dad had lupus. So my dad had discoid lupus for at the time, probably about 10 years. And so and when they had that, they said, okay, right, it's got to be lupus, and the Bloods had high ama and everything else. And by this point, every time I ate anything, I was getting rashes with blisters on my body. And it was like a food allergy, except it was most foods and probably only fruit and vege weren't giving me reactions at one point. And then it just once I started on the medication, it was high, quite high doses steroids. Which, yeah, steroid side effects and lupus, it all kind of feels terrible. So I just that was the last time I remembered feeling well, was probably at that choir. And then after that it's constantly been. And up until recently I like an uphill battle with rashes swellings, arthritis came into the mix, and infections because of then the reduced immunity? Um, yeah, I think in the last two to three years, I've started to look at more holistic treatments, and the lupus itself has just become a bit more less active. But not before it's, it's tried to grab my kidneys. So I'm still dealing with that. But um, yeah, it's been, it's been an uphill battle really with lupus for that many years.

Kelsey Harris:

Yeah, it sounds like it. Um, what would you say like your symptom, the physical symptoms that affect you the most would have been,

Sarah Eni:

it would have been like, swollen joints. I remember not being able to write and I was in school at the time, and it was painful to write. So I'd just not go. In hindsight. Like, if I could speak to any long, younger lupus warriors, I'd say, yeah, just go school and ask them to help you. Don't skip school, cuz it hurts, if you can help it. So yeah, I was that was the joint swelling, and the prednisolone side effects. So I remember my family thinking I was just really angry. And now I'm like, yeah, on 80 milligrams of steroids, you'd be angry. But you didn't know that, you know, and then like, the moon face, all my friends, we'd always waited on 25. So we all had smartphones, by secondary school. And it was all let us take pictures to remember our last days together. And I remember looking back at them and crying because I just looked inflated, because I'd had to go on another high dose and I actually have like barely any pictures of my childhood and excitedly at the mall. Now, I'm 25 I really wouldn't have minded still having them. So again, more advice, you know, it's all part of the process and the healing and the lupus journey. Like it's not a shameful thing to have pride moonface but you know, 15 year old me just wasn't having that. So that was Yeah.

Kelsey Harris:

That makes sense. Because you know, there's gonna be no any way and not like themselves anyway. So

Sarah Eni:

yeah, this added added prednisone alone. didn't help. But yeah, I think just the swelling, the constant The way that my body would change so frequently was a real struggle. One minute, I'd have normal hands the next minute, I couldn't, you know, couldn't bend my fingers or, and the fatigue I seems to kind of learn to deal with and the pain I've really learned to manage as well. So I would say as their arthritis was the number one, and then I always forget nephritis. And that's a whole organ at risk. And I always I still, to this day, forget that as a consequence of lupus, I think of it as something else. But it is actually like a symptom of my lupus was the kidney failure. So that's been a huge part of my life.

Kelsey Harris:

A bit more about the kidney for

Sarah Eni:

Yeah. So with the kidney failure, I actually didn't realize there was anything going on, until about 2018 when I had a letter, saying that my wife was a clinic, lessor, and they'd mentioned my kidney function declining in the clinic lesser, and very briefly in the appointment, but they hadn't told me what a GFR was. They hadn't told me that mine was 55. I didn't know what 55 men. And I feel as though I might have just been unlucky in the system. And I've missed a lot of key information on the journey that was quite important. And But yeah, I didn't know that my kidneys had gradually been declining. But for many years, it's now looking back on my bloods retrospectively, I'm like, Oh, my gosh, I had 90% kidney function here. Now I'm kind of dancing around between 11 and 18. And that's like, it's only just now that I started to pay attention to it and make those like diet changes that I needed to make and things like that. And so yeah, with the, with the kidney failure, I didn't have the typical symptoms either. And like the swelling of the lower limbs, the fluid retention for me was really sporadic. I still produce loads of urine. And even when I had 11%, I'm currently at 18, or 11, depending on which hospital I go to, which I'll get back to later. But I'm, I'm trying to focus less on the numbers now. So yeah, I just didn't have the typical symptoms. So again, it was like, I felt fine. I worked my say, Fine, I felt Okay, I worked. I managed, I didn't have any issues with my urine that apart from some protein, which I just accepted, as they called it protein leak, you know, they didn't say, renal failure, they said, You've got blood and protein in your urine. And I thought, yeah, that sounds like a symptom. If they'd have said, You've got renal failure, I might have realized the depth of it. So that was quite a horrible shock. About two years ago, that kind of led me to changing my diet a lot and trying to salvage whatever kidney function I've got left. Mid pandemic, it's not really the best time to stop diagnostics. So don't try and put it off as much as I can.

Kelsey Harris:

So I mean, obviously, you were diagnosed quite young. You kind of mentioned that, you know, maybe you weren't, you didn't really understand everything because of that. Do you think that's something that that affected some of your decision making kind of throughout the years or families?

Sarah Eni:

Yeah, definitely. I think my mom was in the army. So already there was like, my mom was in the army and my dad was the man with lupus who would never admit how much pain he was in. So my immediate response to being in pain and having like, this chronic illness to deal with was just just suck it up and get on with it, do your best or show up and give 100% or don't show up at all, it was all very, it's not what I would advise somebody of that age who was diagnosed if I could speak to them. And and then I very quickly started going to my own appointments alone as well. So I think by the age of 1213, it was just like, going through the motions and I just said, Mom, you don't need to keep taking time off there. So Dad, you're not even feeling well yourself. Like you don't need to, like one spoonie dragging another spoonie for an appointment. I just thought this is pointless. Like I said, I just I just got myself and not much happened in those years. It was just it seemed like a sensible thing to do to just manage my symptoms with medication hadn't crossed my mind that I could try and actually help my body recover someone. They told me that lupus burns out and which was I don't know how many others have had this Kind of myth that lupus can just burn out. So I thought I'll just wait it out, I'll just waste out and whilst waiting out, I've tried all kinds of medication. And yeah, I've reached a conclusion that not for everyone. lupus doesn't just disappear. Like before, they told that's what they told my dad. And that's what my dad passed down to me. So that's two generations of lupus misinformation I received and they, yeah, I just thought I had just just wait it out, I'll burn itself out one day, which I still had that that thinking when I started working. So I'd try and live a normal work life go out for the normal work drinks, do the other normal work things people do? And thought, Yeah, I don't need to look after my house that much you burn out in like 10 to 15 years is actually like a timeframe. They said, like 10 years. And I was like great, not my whole life. And so misleading. It wasn't true. Needless to say, I've heard some people going into remission. And those people I know put in a lot of work. And it's been quite, you know, it didn't just happen by accident. So

Kelsey Harris:

you also mentioned that so when you go to different hospitals, you get different information. So what can you tell me what is that?

Sarah Eni:

That is really quite worrying. So I, I realized that at the beginning of beginning of the pandemic, I realized I didn't want to I live in London, I thought I don't want to be in London and loan shielding if I don't have anyone with me. So I went to Ireland. And I started going to the local hospital there. And they found that my GFR was actually 18 whereas I was 11. When I left London, I then started work with Dr. Brooke Goldner. And, and started, I changed my diet really drastically, like I was only in raw badge. And for like a month, I did just raw badge and like loads of it. And smoothies. It felt horrid. My bloods got so much better. But then, now that I've come back to London, I've got I came back in the middle of the pandemic as well for an appointment. It was back at 11. And I thought, Gosh, is that just stress? And I told them at the hospital, and they said, or maybe you're just a bit stressed, or maybe you you've just had a bad few days went back to Ireland. And again, it was 18. And I realized that they do some adjustments based on like your ethnicity. So for African and for black Africans or caribbeans, they would times the GFR by 1.20. Yeah, they would add that to your GFR. That wouldn't explain the discrepancy though, right? And I asked my doctor, or one of the doctors I spoke to yesterday, I asked her, What the what the actual, like what the discrepancy could be. And she said, maybe it's just the Irish air. So that wasn't a good enough answer. And I still don't really know, I just don't trust my bloods. But she said they don't really care about the GFR. It's not just your GFR. It's also like your potassium and your sodium, my urea, all of that is fine. So it seems as though my body's tolerating such a low GFR. She explained that the GFR is just based on the creatine. Now I'm 25 years old, and I'm just learning this now, which is extremely late, considering I've seen this doctor for the past three years, maybe even four. So now that she's explained that to me, I'm less obsessed with this GFR marker. And the way I read the GFR it's like if it says 11% I see that as 11% kidney function, and that's really worrying. And I think it's hindered my ability to kind of get on with life at points. So I've decided to kind of stop focusing on that particular marker, since it's not the be all and end all. And it doesn't mean that Yeah, once I hit a GFR of 10 I'd have to get dialysis. While it's still. My body's still trying to cope with what it has. And I'm helping it as much as I can with diet. So yeah, hopefully that so.

Kelsey Harris:

Yeah. You mentioned something very interesting that No, you didn't. You were told then what you were told Now, as far as like, which I think is very interesting because it makes me wonder how often we're not told things About her illness that maybe we should know. And just like in just things like numbers like, well, this number sounds bad. But, you know, like you said, there's other factors.

Sarah Eni:

Yeah. Like, I think that happens quite often, I do ask a lot of questions.

Kelsey Harris:

Mm hmm.

Sarah Eni:

And to think that I still didn't get this information, when I usually turn up to an appointment with like, five or 10 questions in my phone ready to, you know, throw at the consultant. It's just, and then I meet other lupus warriors who have nephritis. And I asked them questions like, what's your GFR? And some of them don't know their GFR? And I'm like, neither did I. But you probably want to keep an eye on that. Like, the doctors obviously are giving everyone the right information or the same information. And I know of some people who have ended up with complete kidney failure where it totally could have been avoided, I think, and I know, it's not helpful for us to retrospectively look back and think God, I could have should have would have could have, but we can't help deny the fact that yeah, if he knew certain things, we do different things. Like, if I knew certain things, I probably wouldn't have tried the gaps diet. If I knew what I know now about proteins and weak kidneys, I wouldn't have gone to a holistic therapist on the street on the high street, and asked, you know, what diets might help my autoimmune and been told to eat like, chicken broth, and chickens and steaks in an attempt to help my kidneys. It was the worst thing I could have done, my bloods reflected that. And, you know, with that, that sort of misinformation, it kind of leaves us in a really vulnerable place, we end up making wise decisions for yourself, especially like, someone proactive about their health, who's going to try holistic treatments really need like the full picture on on your labs and your condition before you can do that. So yeah,

Kelsey Harris:

that makes sense. Um, so just continuing on the diet theme. So what have you found has been helpful for diet

Sarah Eni:

Um, diet wise, it's what's helpful. And what I'm managing, I'd like two different things. And what helped was most helpful was raw, plant based, grain free. I lost so much weight, I was so hungry, because I just couldn't, I just didn't enjoy veggies that much, I guess. And so I find it difficult, but it helped my blogs, it helped my symptoms, I had to this is why I was working with Bronco had to fill out this form so she could see the doctor could see how my pain was and my mood. And I think I recall my mood not being great throughout like sometimes even going down. But my pain symptoms were just completely going led completely, like a one or a two, sometimes three, versus like a seven when I started so it did work wonders. It was just the first time in my life, I've had to not use food as a crutch. So that was a big deal. It brought out a lot of issues and kind of started me on more of a holistic healing. But aside from that, as well as cannabis has been my only painkiller for the last two since 2017. Actually, because I can't have insides with damaged kidneys. I can't have codeine and I found out recently though it was still being prescribed to me. So again, there's loads of I don't know if this is a UK thing, but I could be I was prescribed things that would have hurt my kidneys for a lot longer than I should have been having. And I just decided the safest option for me was to kind of go towards a more natural painkiller turned out to be the best anti inflammatory for me. I'm taking prednisolone taking ibuprofen for four times a day, right went down to taking like having a kind of a suppository in the night and maybe a drop of oil in the morning and then I'm good to go for the day. So that's changed my life a lot and then yeah, just sticking to I stay as plant based as I can. I try and have like as much raw food I say as I can I could do more but like as I'm able to right now, rather than going 100% off the diet I've kind of stuck to plant based and trying to keep the grains as low as possible gluten free where I can and then it does make make a bit of a difference I found and if I slip up and I have I have slipped up and have have eaten bad food for a few days. I'll get my old symptoms back again. I'll get like, sometimes or something really weird happened the other day I meet again for a while, like for a few days, my mom cooked loads of fish dishes. So I had those two. And one of my hands just completely swelled up. I couldn't bend my fingers I just woke up with I was like, oh my god that hand again, like, I haven't seen that for ages. So needless to say, I just did a day of green smoothies and fruit and vege. And I, the next day, I was okay, and loads of cannabis, of course, but by the next day, I was okay. So yeah, I think it's given me a bit more power than I can control how I feel somewhat with what I'm putting into my body makes sense, I can get down with that logic. Doctors have always told me that diet wouldn't make a difference. Like the classical me, it would make a difference. Because like, I've always thought I need to see a nutritionist and paid them to tell me very conflicting, different information. Or when I go back to my physician, they always say, our diet won't help you. I had one tell me that I'm too far gone for diet to help my knees. Which was, I mean, I was I was at 20% year for us. So you know, that was not correct information. And, yeah, now I think that diet has given me a lot more control over how I'm feeling alone with the cannabis. So those two things have been a real game changer.

Kelsey Harris:

Yeah, I mean, that diet thing, I think, props to you for being able to change your diet like that, because I it's hard I, I have undifferentiated connective tissue disease, which is like lupus, but without any of like the organ issues. Or with that, usually without rashes, as well. But it's like a lot of joint stuff. And I tried to change my diet. And I was, I think, because I was starving. I was just like, so grumpy all the time. And I couldn't do it long term. So I've made like some minor adjustments, but I like I'm very impressed that you were able to, to make like some major investments.

Sarah Eni:

That was just for a month. And that was just because I had Brooke Goldner. I had her on the phone to me every day. We were it was it was an intense, rapid, rapid recovery. protocol. It wasn't something that I actually managed to keep up on my own. Right, I was back and I didn't have to check in with her. I was very self sabotaging of me. I'm having to just accept that this is who I am and try, try and heal from that. But the second I didn't have to answer to her. I like these toasts. And I started eating foods that were inflammatory again, and I felt a little bit of an ache kind of creeping back in. But I was like God, like when I'm sad. I want a jam sandwich. I'm having a jam sandwich. And yeah, it kind of snowballed into a burger. And then there was like fish dishes left, right and center. And you had to reel it back in because all the old symptoms tried to come back. And I just thought I can't really afford to let the kidneys get any worse. Yeah, they're kind of as bad as they could be. My body's doing an amazing job of dealing with, like, even the doctors have to admit that. So yeah, I mean, I think what you've done is probably more sensible, long term. Like if you can make it a lifestyle change. It's more sustainable than like 30 days of basing your inner demons with food. And using raw, I was so hungry.

Kelsey Harris:

raw vegetables only I can't like and fruit, like I can't imagine that

Sarah Eni:

Starved. And it was the quantity as well, it was eight cups. So eight cups of high nutrient beverage and 12 cups of bed altogether. And I just discovered that I have either the smallest stomach in the world or everything green just gives me so much gas. I was on this I was having such severe detox, I was on the toilet constantly. I mean, it was rough. I had, I'd say I'm like borderline traumatized from what it was because the idea of going into it 100% makes me scared. Um, but in the group there are people so it's like there's a free Facebook group that I joined, or for people and watch with broken people talk about how they're, how they're doing it. And there's something where you kind of be drinking the smoothies but you still eat cooked food and stuff. It's usually advice to people less severe than me. But at this point, I thought if either 11% I was able to have a piece of toast because I was sad. I think realistically, it's more important to give my body what I'm missing. Then just Trying to do everything at once didn't work for me long term. So I'll try and try now to get my body what it's missing and eat more advantage and, and I have not been sick for ages. This is the longest I've not had a cold so touchwood you know things like that do make a difference for us. Yeah.

Kelsey Harris:

Let's talk a bit more about cannabis. So you've mentioned like tons of benefits of it. How long did you say you're using it for?

Sarah Eni:

Since 2017? So about three years now, and also in the last year.

Kelsey Harris:

Okay. And how much like how often do you use How much do you use?

Sarah Eni:

I'd say daily I'd use at least well less than what less frequently now because COVID so my supplies been been less consistent, but I would usually have 300,000 milligrams suppository with 300 milligrams extract weight of active cannabinoids. Now 1000 milligrams extracts weight 300 milligrams of like active cannabinoids in a deposit tree. I'd have that every night. And I take a few drops of one to one oil. And my suppositories would be like a four to one ratio, so more CBD than THC. And I've got like major hormonal issues. I found that out from one of my nutritionists. So when you've got high estrogen and stuff you don't really want parently you don't want too much THC. Oh Hmm. I've been having more CBD in my suppositories. But the THC for me helps with the pain. I find CBD alone just isn't, doesn't do it enough. And, and the one to one oil, I think is good, like for the day because it's well rounded. I'm not having huge amount of it. It's just like quick pain really. I'd vape as well. And I used to smoke. But again, that was probably just because I used to smoke cigarettes as well. When I worked, I did all the work things that was one of the work, things I picked up was like smoking cigarettes and my manager because we were stressed it was for me. So I think I just liked smoking joints, because I missed the smoking aspect. But if I'm being honest, if I vaporize in like a dry herb vape that gives me like fast pain relief and helps relaxation helps with sleep as well, which is sometimes an issue. And so yeah, it's like I use it in all its forms. I've eaten it, I've got it in a powdered version where I add it to hot chocolate. But it's a lot of like products you can get your hands on. I'm currently in the process of getting a legal prescription in the UK was quite behind with it. But getting there. So I'm like everything, everything I've done, I've been upfront with my doctors and the authorities about what I'm doing. They know it's not legal. I know it's not legal. But I needed them to be able to, you know, care for me properly. So I had to tell them. And to my surprise, they were happy for me to continue. And, and they kind of bonded at points, if that's how I've managed to have such low kidney function without the typical symptoms like swelling, because we find that kind of this kind of drives us a bit. And it's just loads of things that haven't really been studied here. But now that the industry in the UK is legal now, and more patients are getting prescriptions. And I think there'll be a lot more more information to access soon,

Kelsey Harris:

right. So, so medical cannabis just became legal in the UK.

Sarah Eni:

And actually in 2018, it became legal, but there were just so it was still it was a schedule is essential for drug not to. And that causes issues around whether people can get it into the country for trials, there's just much more red tape. Only specialists doctors can prescribe it. So the average person would have a GP. And they wouldn't be allowed to prescribe it. And especially this doctor could prescribe it, but they probably wouldn't, because they had no guidance on how to prescribe it. And so I've been involved in a lot of the activism around kind of building that blueprint to help people to help physicians be able to prescribe it. And there's something called there's a project called Project 2021 and they're working with some of the newish legal cannabis clinics in the UK to kind of to gather information and data on the patients that are using it because we don't even have that database in the UK, but we're just kind of was starting from nothing From a research point of view, so they they'd be collecting patient data and helping people through the process of getting prescription so that's why most recently tried to jump on to applied to to get my prescription with one of the clinics and hopefully we'll be documenting that in some way to try and help people through it because it doesn't seem it's just not a normal thing. It's not a normal thing to have a cannabis prescription here. And some some people in the community are trying to kind of work with the police force try and establish a way that they can deal with patients who are carrying their medical cannabis with them as an organization called can card for patients who don't have a prescription yet but are treating themselves like me. And so there's just yeah, we're just trying to figure it out as a country but we're getting there and I'd be really glad when we do because for me it's been the best painkiller and it's done my body the least damage so

Kelsey Harris:

yeah, I'm I'm also a huge advocate of cannabis. I think it's amazing I I use CBD regularly. I I like edibles because I do like some THC because I find it helpful for sleeping. Yeah, like CBD doesn't do anything for sleeping. But like just a little bit of THC. And like, yeah, I think it shows like a really big difference between like, Canada where I am. We do have legal recreational cannabis as well. But I've had a prescription for CBD since 2018, I think. sounds right. Um, and but even then, you know, like, my, like, my GP wouldn't prescribe it either with my rheumatologist because they they're not actually trained on how to do it. So luckily, there's like a specialist clinic where the medical doctors are trained in like, how do you prescribe cannabis? So that's where I go. But like, I think everywhere, I was just really behind on on properly.

Sarah Eni:

Yeah, and I didn't realize that would be an issue over there as well. So yeah, it sounds like the same kind of barrier. I know, there's an organization here who I think can pass who they specialize more in the education of professionals. There's now like an accredited course that doctors can do so. Um, and I think I kind of encouraged patients who are treating themselves like in the UK, even if they've not quite a legal prescription if they feel safe to, to kind of let that be known. Just kind of help break down the stigma, because I don't know if there is over there. But there's such a stigma around cannabis in the UK, to the point where if you tell your GP you're using cannabis, here, the only way that they can log it on the system is to say that you have a cannabis disorder. There isn't an Oh wow. There isn't an option for them to say Sara uses cannabis like they have to type that in manually. There isn't one of the dropdowns doesn't exist to say, you know, medical cannabis user or treating, supplementing with cannabis products. It's just cannabis use disorder. So that's the level of stigma that we're up against. So I kind of just encourage people like, you're not, you're not the stereotypical terrible reefer madness stone is just a patient trying to manage your life and probably doing the best thing for yourself. Talking yourself up with some cannabinoids and managing your pain without being off your head on Tramadol, because that wasn't fun.

Kelsey Harris:

Yeah. Yeah, it's I mean, here there's definitely not that kind of stigma, which is great. Like I and I've noticed a shift in the last couple years since especially since it became legal recreationally like the huge shift now it's like you can like I can tell my pharmacist that you know, they want to know everything you're on and and including cannabis, which I think is great, but but what what kind of advice would you give someone who is kind of nervous about trying it for the first time to see if it helps their symptoms, especially in you know, in the UK where it's not legal

Sarah Eni:

to go for CBD first because CBD is legal. And I started off as CBD. It's what gave me a clue that it was doing something. It was very subtle, but I was in enough pain to notice the difference. So they kind of showed me Hey, this, this cannabis based medicine is doing something. And so yeah, I'd say if someone's nervous to kind of try with CBD. There are some good brands. There are good Facebook groups that discuss them. And just to give it give it some time, and try a variety as well, like don't try one drop and expect it to work as quickly as I could as a poem. It's not the same. It's not as harsh on the body I find. So it's not going to have such a immediate effects. And if and if anyone's use it recreationally as well, I'd say them, there's definitely no reason for you to try and use that in a medical way. I know a lot of patients that probably smoked a joint or two in school, and then never touched it again, up until that condition, left the breaking point. And then they've been, you know, open to trying it. So I'd say try with CBD. And if you can access clinics, like do, you can't access clinics, there's like loads of information online. And I'm always happy to talk to people about it. When they asked me, even if we're not from the same country, like I'll talk to them about what's helped me and what brands have worked and send them like bits of research, I found like there's loads of abstracts regarding the use of cannabis in the different conditions. And, you know, if you can get your head around reading an abstract or a research paper, then you'd find the information you want.

Kelsey Harris:

Yeah, totally.

Sarah Eni:

Definitely worth a try.I think.

Kelsey Harris:

Awesome. Let's just talk a little bit about mental health. So how has this whole process of having lupus and your diagnosis and all the things that have happened affected your mental health?

Sarah Eni:

I'd say terribly, like I didn't absolutely terribly. I only this year, only after working with Brooke Goldner is when I kind of really had to face up to the mental aspects, I think, again, growing up with a father with lupus. So that's like a man. with lupus, he's not going to talk about his feelings for that. And then a mom who was in the army, like she wasn't, she wasn't currently what she was. That's just her personality wasn't very much talk about feelings growing up. So I hadn't faced up to them. I was for psychological help, but our healthcare systems really strategy. So I think I had six sessions of CBT. And, like cognitive behavioral therapy, barely scratched the surface. And my last session, the lady said, you probably need talking therapy and a lot of it to don't do here. So good luck, and sent me on my way. Um, but when I yeah, working with broker just one of our first conversations, where I was my first conversation with her when she explained to me what the 30 days would entail. It wasn't just diet, like diet was like one of seven, six or seven aspects, like one part of it was self care, and that you had to experience less every day. And she listed everything out to me. She said, you change your diet, I might call okay. exercise every day. I'm like, Yeah, fine. And then she says, you have to experience or she said, you'll need to experience bliss and do self care every day, at least 20 minutes. And apparently I grimaced. And I didn't realize I did that. And she said, Okay, so your reaction right now tells me that we really need to focus on that. And throughout the process, it was the hardest thing. And it probably comes from, I've been not diagnosed, but got about five or six sick notes that state severe depression. And I guess in the UK, again, they're just not that. I don't know, like the great for saving your life if you're about to die. But I think their management of chronic conditions is really a lot of left to the patient to figure out and ties together. And I realized that having that many thick notes that had severe depression written on them, or depressive disorder, might mean that I've got depression. And then my dad recently had some mental health issues that he had to deal with, like professionally for the first time in his life. And he had depression and I thought, oh, gosh, okay, so I've got depression, I'm just high functioning. And it's not, it wasn't that obvious to me, but I did pick up on it and tried to work through it in a way and she, you know, I think therapy would be like, very useful for me. And I probably would have benefited from having it throughout this process. I think you know, hearing you're losing an organ is traumatizing. You might need to speak to someone about it. And hearing just hearing that you've got an incurable disease is traumatizing. You probably you probably should speak someone about it. Even if you think you're I thought I was okay. It's just like I'm 25 now and I'm realizing that wasn't okay, I'm just I've just become high functioning, depressed person. And I did ask my GP the other day, like, do you have depression? And she said, Well, yeah, I'd say so. Just like that. Just I'm like, am I supposed to do anything? And she said, Well, you can't have antidepressants because of your kidneys. So, again, Cannabis, great help for that. I think it's helped me to manage my mental health in a sense, but yeah, definitely. I recommend anyone with a chronic condition, if you can access therapy, if you can talk to friends, if you can join support groups, like do, I didn't, because I thought I was fine. Um, but I feel like, it's a very personal view, I guess. But I feel like these things do manifest themselves as well, like in the body. And I thought I was okay. But I know for a fact that when I was younger, I used to say, I was allergic to my mom, because if we had an argument, I'd swell up, like my body's reaction to stress is that strong. So to think about, I'm 25 years old, and I'm in like, high stress jobs, and I just like, have this high functioning depression, and I want to pretend everything's fine. It's like, actually, it needs to be more careful to my body, but more careful with my body. I think Brooke, kind of used an analogy regarding like a child, like, would you do this to a child? And that's kind of the kind of thinking of how to adopt recently, like, treat yourself like a child and be careful with yourself? And you know, don't ignore your feelings, or all that good stuff.

Kelsey Harris:

For sure, I yeah, I think that's I there's such high overlap between chronic illness and, and mental health issues, that, you know, anybody who's listening, you know, should definitely consider, like you said, either therapy or if you don't access therapy, at least a support group. And then you mentioned self care. And you've been posting a lot on Instagram, about self care. And so what kind of curious if what are some things that you really like doing for self care, you find have been helpful for you,

Sarah Eni:

I find I really like baths. Like, I really love a bath, like, just, it's like a hug, it just feels so good. And I did, actually, while I was working with Brooke, she reminded me not to be on my phone in the box. So I've had to kind of adapt the way I do that a bit. So I'm actually getting the real benefit of the relaxation. And I really like dancing, I tend to just start dancing when I'm really stressed. And I've asked a therapist, if this is normal. She said she thought it was just like a coping mechanism, but go with it, because it helps. So I find that helpful, and just moving my body when it doesn't hurt. Like I really appreciate those days. So, um, I find that's how food used to be a big part of self care for me, well used to be a big emotional thing for me. So I've kind of turned that into a self care thing. So whereas I'd say before, if I was a bit Moody, I'd order a pizza. I'm trying to like, make myself and really nice fruit salad. Or just like, during kind of my superfood drinks with like, maybe leave the horrible greens I don't like out and just have it with berries. And suddenly that's like, an amazing bit of self care. Like, rewind five years time, like I wouldn't have found drinking a superfood berry smoothie needs to be like an act of self care, but not adding a kale really is an act of self care for me. So, yeah, I'm just yeah, I think just seeing friends as well just like letting myself do nothing, as well. I think chronically ill people boys trying to do stuff when we feel well. And the last two days, I've actually not felt that great. Or the last few days. I've not felt that great. And today I feel okay. And tomorrow, I think I'll feel okay, because I've taken it so easy, but I'm still not gonna do anything. Whereas before I'd be like, yeah, I feel better. I should do this. I should see that. I should do that. I should take the cat to the vet. Like, she's fine. I don't actually need to do anything. So I'm just not gonna do anything. And that's like, yeah, that's a massive bit of stuff. okay for me as well now.

Kelsey Harris:

That's awesome. One of my favorite questions to ask my guests is how are you making the most out of your life right now?

Sarah Eni:

Ooh, oh, whoa. COVID has changed everything.

Kelsey Harris:

awkward times ask the question but,

Sarah Eni:

but actually, it because I fled to Ireland. I had the best time just being able to be out in nature more like I live in London. Unlike pretty much central London, and COVID means that all everyone can do is walk in the park. So now that I'm back, I really realized that the best thing I did was going to Ireland, I was swimming in the sea or floating, kind of just not drowning in the sea going on, like long hikes that I didn't think I'd be able to manage. But somehow just, I felt better out there. Like it was just that being that close to nature, walking around barefoot. Like it was just things I don't get to do. Yeah, like walking around barefoot in the grass. Sometimes you'd wonder is there a needle in here like this day, like in Holland, it was just very, it was just lush, it was lovely. So that was I was making, I think, making the best use of my newfound health that I didn't have before. I was like, enjoying being active again. Like I used to play sports before I got sick, like when I was a kid. So it's like, but I was the fastest runner in primary school like that was, that was a huge thing at the time, and I guess I lost all this trust in my body through being ill. And now I've just kind of got it back. And I recognize that my body can kind of can hear a bit can get a bit it can feel okay, sometimes. So, yeah, that's kind of what I've been doing. And now I'm back in London, I've had to get a job again. And I'm like, just trying to focus my free time on cannabis advocacy. And working with clean one of the groups that I've been affiliated with, and the United patients Alliance as well. Um, just to kind of help patients access cannabis, because, like I've mentioned, it's made such a huge difference to my life. I just don't think everyone's going to take the same risks that I took, and I don't think they should. And it's like a huge legal issue with the way that I've medicated over the years. And it's just out of the goodwill of the community that I've been able to do it by one like every patient to be able to access it as easily as we can access a coding prescription I think we should be able to access a cannabis one so that's kind of where my spare time is going. When I'm not working now but yeah 2020 has been an interesting

Kelsey Harris:

haha. Awesome. And where can we follow you on social media?

Sarah Eni:

My Instagram handle currently I probably won't change it again is chia.jpg. L ke like a JPEG. Um, so let's C- -I-A dot JPG and my Twitter is hiatwote. So it's like tweeted, ut twote, and and yeah, those a e my current two. I have my mo e. I wouldn't say more profess onal. Cheers. Oh, it might just be full of memes. But Sarah a y time it is like for if I'm weeting something about cannabis legalization. I'm kind of foc sing that more on policy and p ofessional things and not flood ng it with memes, right. Okay, c ts. But sometimes we want pi tures of cats. So like eve yone's Welcome to f

Kelsey Harris:

Awesome. Awesome. Well, thank you so much again for coming on today. You've been absolutely lovely and giving us so much information. And everyone listening. I hope this inspires you to keep making the most of it. Thank you so much for joining me today on the chronically living podcast. If you love this week's podcast, please subscribe, rate and leave a review. Until next week, stay strong.