Niamh Wedlake talks neuromyelitis optica, long-term steroid use and socializing while chronically ill.
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Quick reminder that I recently started a patreon account, so if you’ve been enjoying this show and you have a couple bucks to spare, I’d be so so grateful if you’d sign up as a patron at patreon.com/noendinsight.
Today I’m talking to Niamh Wedlake about neuromyelitis optica and long-term steroid use and socializing while chronically ill.
As a quick content note, Niamh does talk about suicidal ideation once in passing, and we also talk a bit about body image and weight gain near the end of the episode.
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.
Brianne: So I like to start by asking people were you healthy as a kid?
Niamh: No, I was born ill.
Niamh: So when I was born… I wasn’t born with my main thing, but I was born with a nasal malformation. My nostrils didn’t form.
Niamh: So they were kind of like blocked, so they have to put tubes and stuff in and do surgeries. But I was fine after. It was more stressful for my parents than me. I was just a little baby crying. And then for like four years, I was good. We think.
Brianne: Sure. Nothing, nothing obvious or major was happening. You were just being a toddler basically.
Niamh: Yeah. We don’t know if those falling overs were my disease or just because I was dumb.
Brianne: Right, just a little kid who falls over a lot. Which is pretty normal, I think for little kids when they’re learning to walk, et cetera.
Niamh: My condition, which is called neuromyelitis optica, is kind of like MS.
Niamh: But it’s not.
Niamh: That stated literally overnight when I was four.
Brianne: Okay. And so I know you might not personally remember all the details, but I’m sure you’ve heard this story a million times. So what happened?
Niamh: Basically I went to bed one night and was fine. And then I woke up, and I was fully blind. I said to my mother, I was like, “Put the lights on.”
Brianne: Yeah, “Why is it so dark in here?”
Niamh: Yeah. And then obviously she was concerned.
Brianne: Yup, sure, sure. That would be a surprise.
Niamh: So I woke up blind, and my mother was very stressed out, very confused. So obviously took me to the hospital. They had no idea what was going on. They thought I was going to die because it took a year for me to get diagnosed because at the time it was a pretty new thing. They just thought it was a kind of MS, but now they know it’s separate. So they didn’t know how to test for it and stuff.
Brianne: Like what they were even looking for, basically.
Niamh: They were very concerned. They thought I was going to die because eventually I had more blindness attacks. They could tell that it was because of inflammation, so steroids helped. But then it got even more scary when I got paralyzed overnight.
Brianne: Okay. And were all of these things coming and going? So you maybe woke up blind one morning, and then your vision sort of came back?
Niamh: Yeah. With treatment.
Brianne: With treatment. With the steroids.
Niamh: Yeah. Okay. They would last a while, and the damage is still obviously there, but not fully.
Brianne: And then you also woke up paralyzed basically.
Niamh: I can’t remember most of the stuff, like I’ve got little flashbacks and that’s about it.
Brianne: You were really young.
Niamh: I was busy. I was playing with toys. I didn’t care.
Brianne: Obviously. Of course. You had important stuff to do.
Niamh: But they really had no idea. But after doing loads of research and stuff, the doctors and my parents tested me for neuromyelitis optica, which is an antibody test. So. So a blood test. Yeah. People with the disease usually present with a certain blood chemical in their immune cells that is like, “Oh yeah, this is NMO.” And it’s different to how they test for MS.
Brianne: MS is usually… starts with an MRI because they know the damage that they’re looking for. Right.
Niamh: Exactly. But with MS, it’s more like full nervous system damage, but NMO targets, the spinal cord, the brain, and the optic nerves.
Brianne: Okay. Specifically?
Niamh: Yeah. So it doesn’t target other parts. Obviously that’s a lot to target.
Brianne: Those are some pretty important parts of your body. Yes, sure, sure.
Niamh: But it is known now to be different to MS and known now that the treatments for IMS that they used to use for NMO, actually make NMO a lot worse.
Brianne: Okay. So they are not just ineffective, but they can actively cause harm. Okay. That’s a good thing to know, I guess.
Niamh: Yeah. I guess if you think you’ve got MS, and then you’re like, “Oh wait, that made me worse.” Then they’re like, “Oh wait. Maybe its not MS.”
Brianne: Gotcha. Yeah. Maybe it’s NMO. So you were, it sounds like, diagnosed when you were about five, if it took around a year.
Niamh: Yeah. I was five when I was diagnosed and then I had a few more attacks, both blindness and paralysis, where I would lose everything and then have really intensive PT and OT and stuff. So my last attack was when I was like seven.
Niamh: But that’s because they found the right treatment and stuff for me. I’ve still got NMO. I’ve still got all the symptoms and the damage is still there, but I’ve not had a literal relapse. I guess it’s kind of like a remission since then, but I’ve still been very affected.
Brianne: Yeah, of course. And so first, what does the treatment look like? Because you mentioned initially they dealt with flares with steroids, which is pretty common, but obviously not necessarily something that will cause longterm remission. So what were they doing first?
Niamh: So during a relapse when they notice that your symptoms have become really severe over a few days, they gives the patient high dose IV steroids to reduce the initial inflammation and everything.
Brianne: Just chill everything out right away.
Niamh: Yeah. To minimize the damage, I guess. And that works really well, but they need to kind of keep these relapses at bay.
Brianne: Right, so to stabilize.
Niamh: To do that, they use immunosuppressants like CellCept and Rituxan. They use normal immunosuppressants, but now they’ve started using low dose chemo runs. And those are really effective. Last week, the first official FDA-approved drug for NMO was… approved, I guess. And that’s a low dose chemo.
Brianne: Okay. That’s been specifically tested, and perhaps altered, perhaps not, but specifically tested on an NMO population.
Niamh: And that’s got like a 90% success rate. And basically, what the minimal suppressants do is minimize the amount of white blood cells my body can make which isn’t a good thing, but necessary because that’s where the NMO antibody lives.
Brianne: Right? It’s hurting your immune system overall, maybe, but your immune system is also what’s causing the damage, and that’s what this is trying to stop or what it is stopping. Yeah.
Niamh: It works. They’ll probably come up with a better idea in the future.
Brianne: We can hope.
Niamh: …that’s less damaging.
Niamh: But it works. And with those, it’s hit or miss depending on the person, obviously, but there’s a lot of different options, and sometimes they’ll use IVIG.
Niamh: Or plasmapheresis which will clean the blood basically.
Brianne: Yeah, which makes sense. And I know… I want to say Felicia who has MS, who’s someone that I interviewed, that was one of the first interventions they did when she was initially hospitalized with MS. It’s like, “Let’s just get the trouble out of your blood to start with. Which won’t stop you from producing it, but it might minimize this specific episode.”
Niamh: Yeah, exactly. And then also symptom control.
Brianne: Right. Okay. So that was… so you’ve been on, basically… it’s maybe a few, but you’ve been using this kind of medication since you were a seven.
Niamh: Yeah, I was on one for like five years, and then I’ve been on this one for like six years now. And the reason they changed the other one was because they had to up the dose and upping the dose, obviously when I hit puberty, really made me ill and made me severely anemic and stuff.
Brianne: Okay, so it was impacting perhaps your nutrient… absorption, that’s the word I’m looking for, or something like that. Yeah.
Niamh: It was the actual bone marrow, I think. Which is where your hemoglobin comes from, I think. I don’t know.
Brianne: That’s… I really don’t either, even though I do this podcast, but important stuff. It was causing big and different problems worth switching meds for.
Niamh: But then they put me on this other med, but to do that they had to put me on steroids to make sure that my immune system was controlled while they were transferring.
Brianne: Yeah. During the transition to make sure you didn’t flare.
Niamh: Decreasing, increasing, all that kind of stuff.
Brianne: Yeah. Got it.
Niamh: But going on the steroids also made me severely sick for the last six years, and that’s why I’ve been so sick for the last six years.
Brianne: Okay. So it sounds like maybe between seven and when the meds switched, so also puberty, when so much changes in your body, things were pretty stable and now you’re managing all the related junk almost.
Brianne: To be really technical
Niamh: The long term effect of that kind of medication, I guess.
Niamh: Before that I was normal. I was starting to go out with my friends by myself and go to town by myself and everything and just being normal. Like yeah I was blind, so I needed some kind of support. Well, I was stubborn. I didn’t take support, but I could manage with the sight that I had. I can see my surroundings. I just fall over a lot of stuff.
Brianne: Yeah. And does your vision still change at all or is it typically pretty stable? At the level that it’s at.
Niamh: It only changes when I’m tired. When I’m tired it gets like faded, which sounds weird.
Brianne: Okay. Yeah.
Niamh: And then that’s kind of hard, and reading makes me really tired. Like even if it’s in my big, huge font.
Brianne: Right, but just that level of focus or something about the way that it… yeah. Yeah. The way that you have to do that.
Niamh: Besides that, yeah. It’s the same all the time. I can see my surroundings. I can’t see far, but I can see at least a good like 20 foot. I can’t read within… I can’t read big print from more than a meter away.
Brianne: Right. Like far away.
Niamh: When I am reading, I hold it right by my face.
Brianne: Yeah. And just… I think I know the answer to this, but because I think a lot of people won’t have head of this, I’m still gonna ask. What impact do glasses have on this kind of a vision problem?
Niamh: Everyone asks that. They just don’t do anything.
Niamh: Because basically with glasses… it helps your cornea and your retina, but this is the actual wire from your eyes to your brain. It affects your visual processing, I guess.
Brianne: Right. They just interfere at the wrong place. Focus… getting the eye to focus isn’t your problem getting that information. Yeah, that’s… I wouldn’t have known what the exact explanation was, but I figured that there was one.
Niamh: Yeah. It’s because of the optic nerve, which is basically the wire.
Brianne: Yeah, that’s a good analogy. Okay, so yeah, so before that you’re like, “My vision is impacted.” But you were… and you were probably used to it by then as well.
Niamh: Yeah, it was normal, and I had chronic pain, and I was on and off crutches all the time because I would have really bad nerve pain flare-ups. But I was a pro at using crutches. I would just hop around the place and like run on crutches.
Niamh: I was good. And then everything basically turned to crap.
Niamh: When I was like 12.
Brianne: Okay, so you’re 12. It’s puberty, and the great medication shake up we’ll say.
Niamh: Yeah. Because the steroids caused adrenal insufficiency. So my… once I was on the right medication, I couldn’t come off the steroids because basically my adrenals had fallen asleep and weren’t producing anything naturally because they didn’t have to.
Brianne: So like cortisol or other hormones related to stress, but also normal energy levels that you need to function.
Niamh: Yeah, exactly and to deal with stressful situations, and if I were to come off of my steriods it would have literally killed me.
Brianne: Okay. Your baseline would have been so low. Okay.
Niamh: And being on steroids for like five years really messes you up.
Brianne: Yeah. Yeah. Steroids are… every time that people talk about going on, say, prednisone, they’re like, “You feel so great when your flare goes into remission, and then when you start to actually manage the side effects of steroids themselves or tapering off steroids, you’re in a whole other problem.” Yeah.
Niamh: They’re miracle workers, yeah. Definitely. But they really mess you up.
Niamh: It’s like poisoned your body.
Brianne: Yeah, it’s a lot. And so were you also in school full time at this point? How was all of that?
Niamh: I wasn’t managing, at all, but I was still at the point where I was stubborn. Until I couldn’t afford to be stubborn.
Brianne: Yeah, that sounds familiar.
Niamh: Yeah. So I was pushing myself really hard, and I’d go in for like one day and then collapse for a week and then try again, and then I’d be collapsed for like a month and totally out of it in agony and fatigued. So it really messed with my schooling.
Niamh: Because steroids really affect your energy in a weird way. I guess it’s just because it’s not your body’s natural stuff. They affect your glucose. They affect your muscles. They literally make your muscles waste away. So that’s why I’m in a wheelchair now.
Brianne: Yeah it’s… mobility and you, it sounds like, had had problems with mobility on and off anyway, and at this point you’re like, “It’s a really big challenge to try and walk.”
Niamh: Yeah. It wasn’t like wheelchair mobility. It was just like, “Okay, I can use crutches to walk three miles and I’m great at it.” But like, I would never need a wheelchair… I probably would, I was just stubborn.
Brianne: Yeah. You didn’t think that you needed one at that time, and you were totally getting by with crutches. Yeah. And then your energy became such a problem that… using mobility aids is a physical activity like…
Niamh: So between the muscle weakness and the worsening in the pain because I was so fragile at this point. And the weight gain and the fatigue and everything. I literally have just been like hobbling, 10 foot for the last five years. I can’t do much more than that. I can do the length of my house and to the front door to the car and that’s about it.
Niamh: Without it severely affected my energy for the rest of the day. Yeah.
Brianne: Yeah. So as a teenager, which I know you’re still young also, but somewhere in this transition you got a wheelchair. And also, how was that from a financial perspective? So do you need to buy that out of pocket, or was it covered, or how do you navigate your system? Because
Niamh: I’m in the UK, we’ve got the NHS. And everything is covered by the NHS. Nothing fancy, but you could get an MRI scan, the NMO tests, mobility aids, physical therapy. Everything you need.
Brianne: And I guess since you had a diagnosis pretty early, and it’s relatively well understood, you can qualify pretty easily for these specific things that you need. Yeah.
Niamh: Exactly. And at this point for disability benefits, if you were legally blind, you automatically got the highest rate.
Niamh: It’s different now because they realize that blind people who are fully blind can get jobs. Right, yeah.
Brianne: If you’re blind but you don’t have these other physical symptoms, then your ability to work is actually pretty great for a lot of people.
Niamh: Yeah, exactly. It’s almost the same as anybody else’s. As long as you’ve got all the accommodations. But in the UK, NHS, I guess, insurance is based on your level of income or level of disability. Everybody in the UK is entitled to it, which is really good. Compared to America, I feel like we’d have to sell everything if we moved to America just to pay for my medication.
Brianne: Yeah, it is a very complicated difference. I grew up in Canada, and now I live in the States. And Canada’s system is quite similar to NHS and so I’m very… Oof, they are so different to navigate. It’s unreal.
Niamh: I would move back to Canada, honestly.
Brianne: Yeah. I wonder sometimes, depending on the outcome of all my tests and procedures right now where I’m like, “Well, does it make sense?” I will still qualify. I will always qualify. You just have to live there because you’re a citizen.
Niamh: You’re just like, “Maybe we’ll rent a house for six months.”
Brianne: Yeah, exactly. Exactly. Get into all the hospitals. Okay. And so you started using the wheelchair, the wheelchair was covered, and that would make a huge difference, right? And your ability to go places.
Niamh: It meant I could, but with… at that point I wasn’t doing anything. I would go to school, come back, collapse for days.
Brianne: Right. Yeah. Your body’s ability to do things didn’t change.
Niamh: No. It meant I could go out if I felt up to it. I would still only last like an hour max at that point.
Brianne: For you with everything going on, what did a crash look like? What does that feel like for you and your body?
Niamh: It’s similar to a way people with ME explain it. The difference being mine is validated by tests.
Brianne: Right, so doctors might take it more seriously right now.
Niamh: Basically. The way they explain it is like what it’s like for me. I do anything, and it hits my energy and I’m done for hours or days. Literally having a shower and done for the rest of the day. Going somewhere for literally an hour. I’m done for at least four days. At my worst times, I was going somewhere like once a month. Even now I’m doing quite a bit better. It’s still like once a week, but I don’t know. It’s complicated. When I crash, I just feel dead.
Brianne: Yeah. Like moving your body is awful.
Niamh: Yeah. I don’t have one ounce of energy. All my muscles hurt, all my nerves hurt. I can’t get comfortable. I’m either in too much pain to sleep or literally in a comatose sleep.
Brianne: Yeah. Totally. Even your brain’s not processing information. Yeah. Okay. And so this was, like you said, you were enrolled in school going kind of when you felt up to it.
Niamh: Yeah. Or when I felt forced.
Brianne: Right, right.
Niamh: By myself and society standards.
Brianne: Yeah. Probably, I’d guess there’s some guilt in there. Like, “I should be doing it. Everyone else is doing it. I just have to make it work.”
Niamh: Or if I had the test or something, I’d be like “Okay, Niamh. You’ve got to go in.
Niamh: But my school were really good. They didn’t bother us that much because they already knew they signed up for in letting me go to the school, I think.
Brianne: Right, you had already been diagnosed.
Niamh: At first they were like, “Okay. She needs to come.” But eventually they were like, “Okay. Yeah.”
Brianne: This is what that looks like.
Niamh: Yeah. Or I would go to school and because I’m visually impaired, I had a one-to-one.
Niamh: So she would collect all the work. I’d go to school for that one day, and she’d sit there and do that work with me, and then I’d take a nap, and she’d take me home.
Niamh: And it got to the point where I was just going for like one morning, whenever, and by break time, which would be like half past ten, I would be like, dead.
Brianne: Yeah. You’re like, “This isn’t… I can’t stay anymore.”
Niamh: Yeah. But I kept pushing, and I feel like that really damaged my health because I felt like… you know, stubbornness, can come in useful, but it does more harm than good most of the time.
Brianne: Yeah. And especially in situations like what you’re describing where… I mean, who knows, but maybe there could have been different accommodations, if they existed and you knew about them, where you do more learning at home or whatever it is that suits your body. And when you think you have to do it one way, you’re trying so hard that you have kind of blinders on. Oof. That’s a bad expression for that. Got it.
Niamh: It’s fine. Don’t worry. We did get all the accommodations I could, but we were all pushing homeschool off as much as possible because they felt like it would be bad for my mental health and everything, but once I got to that point, it was the best decision I ever made. And I wasn’t seeing my friends in school anyway. The days I was in school, my best friend would come and sit in my office with me. I’d be too tired to speak.
Niamh: We’d have a mini gossip, and then I would be done. I wasn’t seeing her anyway. And then… my other friends at that point… I couldn’t deal with teenagers.
Brianne: Right, right. You weren’t having that social experience that they were wanting for you when you were actually there. Yeah.
Niamh: Yeah, but I had a year of medical exemption.
Niamh: So I had completely crashed at this point. I wasn’t going to school at all. Everything was falling apart, physically and mentally. And then when I crashed that bad, I was literally so done with everything. I was so depressed and everything because I was just running on fumes. No quality of life at that point. I would try that one day of school occasionally, come home, and collapse for weeks, and then any other energy I had in between was used on doctor’s appointments.
Niamh: You know how it is.
Brianne: Yeah. Yeah. And they take up… that’s one of the things that I always forget when I’m in between intense doctor moments. Just going and doing it takes a lot of energy, and it takes a lot of cognitive presence.
Niamh: Yeah. I’ve got my parents to remember everything the doctor says to me. Right. But even just sitting there and talking to them, or waiting half an hour for the doctor to come is so exhausting. So I would literally just lay there and sleep. I’d wake up for food. I’d watch some YouTube, some Netflix occasionally. But besides that, I was asleep.
Brianne: Yeah. And then did kind of… it sounds like, so things got worse than your baseline, and then did things come out of that rut a little bit to whatever your normal is?
Niamh: Yeah, so I started the homeschooling, and that was really helpful physically and mentally. Well, not physically, but mentally, because I like learning. I’m kind of smart.
Brianne: Yeah. When you take away the things that were making it so hard, you got to actually do it, right? Yeah.
Niamh: And we tried me just doing like three courses, and then we came down to the one I actually wanted to do, not the ones that were mandatory, so I was actually putting my energy into something useful. Not wasting half of it on exams I was going to do bad on because I couldn’t mentally process it all.
Niamh: But then I was doing the homeschool, and then that was really helpful. I’m doing good, and I understand why they put it off for so long because people see it as a bad thing. And then once someone gets into homeschool, their mission is literally to get you out of homeschool. When for some people that is the best way for them to be educated, physically or mentally.
Brianne: Yeah. And I understand isolation is a big problem for so many disabled people, but like you say, physically going and being around other people isn’t necessarily a cure for isolation. That can just cause so many other problems. And so we should talk about isolation for sure, but also talk about all the different ways that disabled people find community online now, and all these different things that have made such a difference in what it means to be at home.
Niamh: And that’s what has helped me so much, having an online community. Since I was little and was diagnosed, my mother’s had a blog about my NMO for family and friends and also other patients. And then when I was like 12, 13 I took that over and started using it to do updates. And that’s basically what I still do. But like mine not.
Brianne: Right. It’s your voice.
Niamh: Yeah. And then I’ve got my actual website blog, not just Instagram, and I really like doing those, and it’s not just sad things. There’s definitely been times where it was just sad things, and I’m like, “Oh my God, I hate my life.”
Brianne: Yeah, but that’s also honest. I think it’s okay to feel that way. Yeah.
Niamh: And I’ve found Instagram the best for its chronic illness community. I couldn’t really use Twitter. I don’t know why, I just couldn’t get on with it.
Brianne: Yeah. It wasn’t for you.
Niamh: No. And then Facebook’s good for support groups and stuff, like for specific issues.
Brianne: Yeah. Are you in… are there a bunch of NMO-specific support groups? Yeah.
Niamh: And when the first one started, when I was diagnosed, and it literally had like… it was on like Google Hangouts and had like 20 people.
Niamh: Or like on AOL?
Niamh: Yeah. And now the bigger NMO group has got like 3000.
Brianne: Okay. Which is… and that’s small compared to some patient communities too, so… which is probably good actually.
Niamh: But that’s like a lot of people for…
Niamh: …to all have the same disease. Imagine standing in a room with everyone who’s got the same disease as you.
Brianne: Yeah. It’s like a stadium.
Niamh: Yeah. But all different people from all over the world, and with my online friends, I don’t just talk to them about being sick. I talk to them about everything because they’ve literally become best friends. So sometimes I’m dealing with their issues and giving them pep talks and stuff. And then other times it’s like, “Oh my God, I hate my body. It’s so mean to me.” Or, “My brain hurts.” Yeah. But then other times it’s just talking about Netflix shows, or they’ve got friends and going out for the day. Yeah. It’s not just sad things, which I feel like most people don’t understand. They’re like, “Oh my God, the internet. Eww.”
Brianne: Yeah like, “You’re all just sharing all your miserable stuff together.” Yeah.
Niamh: Which I think is the viee of the chronic illness community from the outside.
Niamh: But you can put your miserable stuff on there and be like, “Oh my God. My muscle pain is so bad today,.” But then someone might comment, “Oh, have you tried magnesium oil or CBD?” Usually those are annoying recommendations.
Niamh: But when it’s coming from a fellow sick person, it’s welcomed because that might help, and I may not have heard of that before.
Brianne: Yeah, and I definitely find… I love what you’re saying about talking about everything. When I’m talking to my healthy friends about whatever it is, I was just at a wedding this weekend, and so I had to really prioritize rest. Right? In order to participate in this, and talking to healthy friends about it, they want to be supportive, but they just have no idea what all the little obstacles are, but if I tweet about it, about whatever it is, like, “I’m really excited that there’s a fainting couch in the room at this venue!” which is an actual thing that I tweeted, and then people are like, “Yes, that sounds great!” Versus healthy friends who are kind of like,” Cool? I don’t know why that matters.” And it’s fine cause on the one hand… healthy friends and family, you do want them to understand, so you have conversations to educate them, but that takes energy. And talking to someone who already knows you just get to save so much energy explaining things.
Niamh: Yeah. And my homeschool tutor, she’s got fibromyalgia and just talking to her… she comes, and we have like literal therapy sessions for half of our lessons, because we’re both like, “Oh my God, it’s a real person in front of me, who understands!”
Brianne: Yeah. Totally, that’s so real.
Niamh: And having sick friends… it can be hard at times cause they’re all like falling apart and you can’t help.
Niamh: But it’s also a gift. I swear.
Niamh: And it’s cool to just talk to people from all over the world.
Brianne: Also true. I’ve
Niamh: met up with my online friends, and I’m like, “Oh my God, you’re a French person. You’re an English person. You’re a Dutch person. It’s so cool.
Brianne: Yeah. Yeah. I am so with you. That’s an incredible thing about where the internet has gone for sick people and people with disabilities. And so, are we more or less caught up to the present in terms of kind of all we talked about?
Niamh: Kind of.
Brianne: Okay, tell me more.
Niamh: In the last year I started seeing an endocrinologist, which is a hormone doctor.
Niamh: To try and get off the steroids. He was the only one who was willing to even attempt it. The other ones were like, “No, scary”
Brianne: “Too complicated.”
Niamh: I was waiting forever to get off them, and we’ve been reducing and reducing them, and then then in January, I officially came off my steroids completely.
Brianne: That’s exciting if it’s working.
Niamh: Yeah. My… what’s the one? The stress hormone.
Niamh: Yup. That one. It came back up to a normal level.
Niamh: So they are happy with that, and it’s safe to be off my steroids because my adrenal gland has woken back up.
Brianne: What did that process look like? Were you taking artificial hormones orweare you taking kind of other stuff in order to taper the steroids?
Niamh: No, because the steroids basically are artificial corticosteroids… fake synthetic hormones, and that’s what I was on. So they were basically just tapering it and waiting to see if my adrenal gland would be like, “Oh wait, I need cortisol right now. Hello?”
Niamh: Which it basically did.
Brianne: So just going slow enough that you could pay attention to what was happening. Yeah.
Niamh: Within all these last few years I had… I think it was like, yeah, 2017 I had a horrific worst ever in my life pain flare. I literally wanted to die. That’s not uncommon in those few years.
Niamh: But I was serious about that at that time, so obviously that’s concerning.
Brianne: Yeah, that sounds really really hard.
Niamh: But my parents and everything knew, so I was put on morphine to keep the pain at bay, and because I was already so sick, I didn’t really notice how much even a effect negatively it had on my energy and my brain fog and everything. I was like, “Oh, look at me. I can stay awake for hours and I’m not even high and I’m on morphine.” But actually I kind of was.
Brianne: Yeah, like it was… you had kind of eased into it that you didn’t notice a change, but the side effects were not good for you, it sounds like.
Niamh: Compared to other people, I was good on morphone. Like if you put my dad on morphine, he’d sleep forever. Right. But my body’s used to… I was going to say hard drugs, but you know what I mean.
Brianne: Yeah. Well, you, yeah. You’ve already been taking so many things that change your baseline so much that it doesn’t seem as unusual to you.
Niamh: Yeah, exactly. And it did really help the pain, so for that six months where the pain flare was ongoing. I stayed on the as-needed morphine, and I was on every day morphine. So if I’d go out, I’d take extra, and it did actually really help the pain, but obviously I was useless to the world.
Brianne: Right. And that’s…
Niamh: Because I was high and asleep.
Brianne: Yeah. And that’s the trade off that’s so freaking hard with chronic pain, right?
Niamh: And I’d rather be in agony than have no energy. Cause I’m in pain now, but I can sit here and have a conversation.
Niamh: If I took medicines, I would be asleep, and then there’s no point in me taking the medicine.
Brianne: Right. That’s not what you’re looking for.
Niamh: It’s not increasing my quality of life in a pain-free way. I’m just sleeping the pain away.
Brianne: Right. You’re just asleep.
Niamh: Which comes in useful sometimes, but not when you’ve got a life you’re trying to live.
Brianne: Right. You don’t want to feel like that all the time.
Niamh: No. So within the same time… which was a bold move, but we did it… of reducing the steroids, because I’m doing better now, we have reduced the morphine all the way, so I’m not on that now, and the withdrawals weren’t bad. I felt extra sicky, but my pain wasn’t worse or anything.
Brianne: Right. It sounds… it was manageable for you, or you guys were doing it at the right rate basically for that to be okay. Yeah.
Niamh: So the last three months really, I’ve been doing… whereas before I was functioning at maybe 1%… I could still wake up and talk for a bit and eat my food, but I wasn’t completely in a dark room.
Niamh: Like the severest of ME patients.
Brianne: Yeah. Yeah.
Niamh: But I would say from a normal person level, I’m functioning at like 15%.
Brianne: And that’s a huge jump, it sounds like.
Niamh: Yeah, it is.
Niamh: Like I can brush my teeth every day now. I can walk to the kitchen if I needed to, but you know, energy conserving, no.
Niamh: But I can actually go out and have like three, four lessons a week instead of one. And I’ve been going out nearly every week, which is a major difference. Like I am really pushing it, and everyone keeps reminding me of that. And I’d rather they didn’t.
Brianne: Yeah. They’re like, “Remember that you like to go slow.”
Niamh: Yeah. I’m like, “Excuse me, just let me live my life. I’m excited I’ve got energy.” And they’re like “It’s gonna end badly.” I’m like, “I don’t care.”
Brianne: Well, you have to find those limits. If you don’t know… if you don’t kind of feel them out…
Brianne: You can make yourself really fear… living in fear of crashes all the time.
Niamh: That’s where I’ve been for the last like two years. I’ve been so scared to even have hope or anything I’ve just been like. “Oh my God. I know if I go out, I’m going to feel horrific after.” And now I’m just… it helps that my depression has been less bad. Obviously mindset helps in whether or not you’ll push yourself.
Niamh: If you’re depressed and feeling this bad, you just going to be like, “Oh, I can’t do this today. Back to bed.” But I still have those days, but it’s not depression. It’s just ouch.
Brianne: Yeah. Yeah. And it’s hard, I think, to pull apart mental health and physical health when fatigue is… or a lack of energy can be both a symptom of depression, but also it can be a symptom of having pushed your body really hard.
Niamh: That’s also why the doctors bring it up to us constantly. As much as it annoys us, there is a valid point. Your mental health can affect your physical health.
Brianne: Yeah. Yeah. And vice versa. Definitely.
Niamh: It has done for me, but moreso in whether I’ll get myself out of bed or not. Not in whether my symptoms are there or not.
Brianne: Right, right. It’s how you cope with them or manage them, is the tie-in.
Niamh: So I’ve been going out, and I’ve gone to two actual teenager parties. Ooh Yeah. In the last two months, which is major progress because 1.) I’m scared of people and 2.) you know, health.
Brianne: Yeah. It’s just a lot of conversations happen with new people that are exhausting.
Niamh: Yeah. I have gone, and it’s been with my best friend and her other friends. So I felt safe and supported and everything. I’ve been… I don’t know. I don’t remember half the stuff, but I’ve been to a comedy show, just on days out.
Brianne: Yeah. Just going on and doing stuff.
Niamh: With my family.
Niamh: And my brother is so excited every time I’m like, “Yeah, I’m coming.” Because my brother’s like my favorite person, but I haven’t been there much the last few years. In my bed, I’ve been there, and he comes to see me every day in my bed and has cuddles with me and like, laughs.
Niamh: But you know, he wants me to come out and have fun.
Brianne: Yeah, be a part of things. Yeah. That’s awesome that you’ve been able to see that much of a change from tweaking stuff. And then have you found… cause you mentioned when people will suggest, say magnesium or CBD for pain, have you found any other things that make a difference in your day-to-day life? Like that or diet or like whatever?
Niamh: So it sounds dumb, but I’ve got a SmartCrutch.
Niamh: Which is like an ergonomic… I can’t say that word.
Brianne: That’s okay. Yeah. Ergonomic. I think that’s right.
Niamh: A designed crutch. So it’s designed so your arm is at an angle instead.
Niamh: It’s got like a padded handle instead… you’re not pushing down like that, so it’s all in your shoulders. A lot of people with EDS use them because they it doesn’t make their joints dislocate. But for me, that’s been really good. And I feel like that’s one of the major things that’s helped keep my 10 foot of mobility.
Niamh: Because otherwise a normal crutch would be too painful, and then I wouldn’t do it.
Brianne: Gotcha. So it’s a really good tool for you.
Niamh: Yeah. And they were expensive. They are not on the NHS.
Niamh: Too fancy. It’s like 150 for a set.
Niamh: I don’t know. What that is in America, but about the same.
Brianne: Yeah. I don’t know what the exchange rate is right now cause I haven’t had to think about it. Last time I was there I know pounds were definitely higher than the dollar.
Niamh: Yeah, I feel… I think it’s like one pound is two American ones.
Niamh: Something like that.
Brianne: Yeah, so they’re expensive.
Niamh: Yeah. They’re expensive, and they help. If you’re a long term crutch user, I would to look into them. You can get them all over the world. Magnesium oil, I’ll use that. And there’s actual science on this.
Brianne: Yeah, like for muscle fatigue.
Niamh: Magnesium helps your muscles. You can get a magnesium oil spray on Amazon.
Niamh: From the brand Better You. And that’s the one I use ,and that’s helpful. So I use that when my muscles are really aching.
Brianne: You really like that one.
Niamh: Yeah. And I’ve given that to my tutor with fibromyalgia, and she says it helps as well.
Brianne: So that’s promising.
Niamh: Yeah. There’s a body wash foam. I’m just giving little things, but they help so much.
Brianne: Yeah. Well that’s it, it’s often just a bunch of small stuff that you have to try, and then some of them stick around.
Niamh: Yeah. Actual holistic stuff. No, not really.
Brianne: Not really for you. Magnesium in different forms has made a big difference.
Niamh: Yeah, and there’s a body wash foam that’s like a spray you use on dry body, so like when you haven’t been able to shower for days.
Niamh: Because you’re fatigued or you’ve had a surgery.
Brianne: Yeah. There’s so many reasons that showers are hard. Yeah. Like a spray… so not even spray deodorant, but like spray body wash.
Niamh: I’ve got it right here. I’ll show you like that.
Brianne: Okay, yeah. Like a pump.
Niamh: Yeah. And like, shaving foam style.
Niamh: And that’s really good. And okay. If you live in a warm place, this won’t help but having a heated blanket is majorly helpful, like one you lay on, the ones that go under you, because that’s basically a full body heating pad. And it’s amazing not even just in the winter. I can’t use it here in the summer because I’ll over heat, but that’s amazing. I’m drinking lots of water.
Niamh: I’ve always got a water bottle because going back and forth for cups of water takes so much energy.
Niamh: Yeah. And then obviously fans, because people over heat.
Brianne: Yeah. It’s kind of like both sides. You can get too cold, but you can also get too hot very quickly. So, attention to temperature and hydration.
Niamh: Yeah. I’ve got a big fan in my bedroom for when I have my hot flashes and stuff, and that’s useful because it means I don’t freak out.
Niamh: Yeah, just little things and then obviously like pacing yourself, but also kind of accepting your bad things. People hate to accept it because then they feel weak and they’re like, “Ah, I’m giving up.” But it’s not that. It’s just going with the flow. That’s the thing when you’re so ill, your only option is to go with the flow and the more you fight it, the harder it will be and the more of an effect it will have.
Niamh: So I take it literally hour by hour. I’m supposed to be going out tomorrow. Who knows?
Brianne: Right. Maybe, maybe not.
Niamh: Yeah. It’s just little things, and I feel like acceptance obviously is a process. It’s a whole guilt process.
Brianne: Yes. It’s a cycle sometimes.
Niamh: Loss, not guilt, grief process because you lose it, and you’re in denial and then you’re like, “Okay, maybe.” And then you have a mental breakdown, and then you accept it.
Brianne: Yeah. And changes can really disrupt that. Like, you find a pattern that is working for you, and then something happens, and that pattern doesn’t work anymore, and you have to find a new one. Yeah.
Niamh: And it’s a whole back and forth. But working on acceptance and being like, “Okay, this is my body today.” And self-compassion, not being like, “Oh my God, I hate my body.” I’m just like, “Ouch, my body hurts today. I need to be extra nice to my body today.”
Brianne: Yeah. Yeah. Working on you self-talk. The voice in your head where you talk about… explain yourself to yourself. Yeah.
Niamh: And most of that is usually internalized ableism.
Brianne: Oh yeah.
Niamh: But still, whether it’s internalized or just because you feel that way, you still need to be nice to yourself and even healthy people are not nice to themselves like that.
Brianne: You don’t always learn that.
Brianne: Yeah. Yeah. Well. Is there anything that we have not covered yet that stands out to you as important or part of this experience?
Niamh: Body acceptance in a body image form. When you get ill, your body can change a lot. Before I was this ill and on steroids, I was literally underweight. I was underweight my whole life. I was underweight when I was little. I was on the Ensure drinks and everything. But then I started the steroids, and I literally ballooned to like three times my size, and obviously when you’re a 13 year old girl who’s already got an eating disorder issue. That’s a lot to deal with, but for anybody whether it’s betting bigger or smaller from your illness or medication, that can be such a change. There’s people who’ve got ostomies or feeding tubes, like more visible changes.
Brianne: Right, so much happens because your body is the site of the illness.
Niamh: Yeah. It’s constantly changing. Even if you’ve got an invisible illness. Your body is still going to change. I still got fatter than I was and got stretch marks over my whole body. That’s a really hard thing to deal with, especially since most chronic illness affects women more than men. So that’s already an issue, body image, and I don’t really know how… I don’t have advice on that one.
Brianne: I think just talking about it matters. Even if you don’t have an answer. Saying it’s something that you’ve been through or that you think about is helpful.
Niamh: Yeah. I’m at the point now where I’m like, “Okay, I’ve got bigger issues than being fat.”
Niamh: I’m on medication. I can’t exercise really because it will literally make me collapse.
Brianne: Right. It’s not the answer.
Niamh: And I’m not going to starve myself because my body needs fuel more than…
Brianne: Yeah, you need nutrition.
Niamh: I don’t think that’s an issue I need to focus on right now. When I’m in a better place, then I’ll get a better diet, and I’ll exercise more.
Brianne: Yeah, and both of those things… being able to prepare healthy food for yourself is always great. Yeah. When you can do it, when you have the energy, it’s so exciting, and it’s the same like, when it feels safe to move your body, that is such a great feeling anyway. It’s not about being like, “How do I force myself to go on a diet and exercise?”
Brianne: Which is hard and awful to think about it that way.
Niamh: Dieting like that takes so much energy.
Brianne: Also true.
Niamh: Food on your mind like that, like diet culture basically… how disordered eating is my normal takes so much energy that we don’t have. I’m like, “Okay, my body looks different. I’ve still got nice eyes and nice hair. We’ll work with that.”
Brianne: Yeah, totally. I think that is actually good advice. Pick things you like and remind yourself of them.
Niamh: Yeah. And maybe from the chin down is not that great right now, but I got bigger issues.
Brianne: Yeah. And that’s… yeah. The culture is not helping any of us manage that kind of stuff right now.
Niamh: No, and obviously people got more qualities than just their bodies and whether it works or not, or the way it looks. I might not be the prettiest. I might not be the smallest, but I’m funny, I am good at talking to people. I’m empathetic. There’s different things that people care more about. People are usually more concerned about their looks than everybody else’s.
Brianne: Yeah. We think… each person thinks about their own thing way more than anyone else.
Niamh: They’re too busy thinking about their own insecurities.
Brianne: Yeah. Yeah, exactly. Everyone. And I think that’s true. It’s definitely amplified by illness, like you say, but this is something that most people have to reckon with. And it’s just a little bit harder when you’re like, “All of the things that I for some reason thought would give me value in this culture aren’t working.” I can’t work normally. I can’t exercise normally. I can’t do this stuff, and so I have to take a step back and think about what’s really important to me and what’s important.
Niamh: And your own little niche.
Niamh: For you it’s your podcast. For me it’s my blogging.
Brianne: Yeah, yeah, you still get to make something that you care about.
Niamh: For other people it’s making products and… chronically ill people are the best self-employers, I think.
Niamh: Because we’re all here with our little side-hustles between being professional patients. We’re like artists and podcasters and bloggers and all kinds of…
Brianne: Yeah, just out there making stuff.
Niamh: You kind of like work with what you’ve got basically. In like, everything chronic illness.
Brianne: Yeah. I think you’re right. That’s exactly it. Amazing.
Brianne: Thank you so much for taking the time and precious energy to talk to me.
Niamh: You’re welcome. It’s been good.
Thank you for listening to episode 44 of No End In Sight!
You can find Niamh on instagram @morethanaspoonie and you can find me on instagram and twitter @bennessb. And of course you can find this show on instagram @no.end.in.sight.pod. I post each episode as a story but haven’t posted to the main feed in a while because I’m so behind on transcripts – as you know. But of course, the whole reason that I’ve started a patreon account is to help with those transcripts, so I’ll go ahead and plug that again: it’s patreon.com/noendinsight.
Next week I’ll be talking to a woman who developed ME in high school, so make sure you subscribe in your podcast app to find out when new episodes are available. And if you’ve been enjoying this show, I would be so grateful if you’d leave a review on Apple Podcasts so that new listeners know what to expect from the show.
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.
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’ve got some fun fall patterns in the shop, and dozens of very simple icons that you can customize to your heart’s delight. I’d love it if you checked us out at digitalartisanal.com.