R A A Dakar talks ME and fibro, the isolation of chronic illness, and mourning the person you used to be.
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Transcript
I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
As usual, here’s a quick plug for my patreon campaign just in case you’ve been enjoying the show and also have a few bucks to spare each month. I’ve been using the patreon money to subsidize the cost of transcribing the podcast. So, if you’re interested and able to contribute, you can find that at patreon.com/noendinsight.
This week I’m talking to R A A Dakar about ME and fibro, the isolation of chronic illness, and mourning the person you used to be.
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 how your health was as a kid?
RAA: Oh, as a kid, I was great. I had no… I had nothing as a kid. I was never sick. I didn’t even have allergies. Nothing. I was super great as a kid. Nothing at all. And then…
Brianne: So then what was the transition like? Which is what I know you were getting to.
RAA: Well, no. And then, I had… I had really great health. I was super active, very much into… very athletic my whole life really. And then I guess it started going downhill maybe when I moved back to the US. And then…
Brianne: So had you been living in the US as a kid? Did you grow up in the States?
RAA: Well, I kind of grew up all over the place, a lot in East Asia and then in the US and back and forth. And then I moved to France, and I went to university in France. And I guess the only childhood thing I would say was allergies to dairy, like dairy allergies.
Brianne: Like lactose intolerance?
RAA: Yeah, lactose intolerance, but it only happens to me in the US. If I’m in Europe, I can eat it. Yeah, it’s the crap they put in it. I can eat yogurt all day long in Europe.
Brianne: Weird. Interesting. I believe you. It’s just so… that kind of thing is so strange and interesting.
RAA: Yeah, because I think it’s the crap that they put in it. I think that’s what it is… more natural. I can’t eat it in the States. It’s what they put in the cows, what they put in the milk. So I never had any issues. And then I got pregnant in the US, and then I had a botched a epidural.
Brianne: Okay, that sounds difficult.
RAA: And that’s where my problems kind of started. So I had a botched a epidural, and then they did what they call a blood patch. I don’t know if you know what that is. It’s really disgusting.
Brianne: Yeah, okay, I’ll prepare myself. So for an epidural to be botched, does that basically mean it just didn’t work? I just don’t know enough about it.
RAA: Okay. It did work, but I had been in… and this is how it was explained to me. I don’t know if this is the correct version, but this is what was told to me was that I was in labor for about 20 hours. I didn’t want an epidural, and finally I was just like, “Okay, to heck with this. Give me the goddamn epidural. Give me the thing.” And so I got it, but then apparently it was too late. I don’t know. That’s just what I’ve been told. And it did work, but they kept upping it. They kept upping the dosage, I guess you would call it.
Brianne: Like they just kept giving you more maybe… I get that we’re both kind of guessing, but something like that.
RAA: Yeah. Yeah. And honestly, when you’re giving birth, it’s like you’re not really noticing so much.
Brianne: It’s not your first priority.
RAA: Yeah, it really isn’t. And so baby was born fine, healthy, but then the whatever it is that they’ve put into your spine, it was leaking in my spine. And so I couldn’t sit up or stand. I had to stay laying down. And they said, “Okay, you have a choice. Either you just let it leak out on its own or we do what we call a blood patch,” and that’s when they take your own blood… so they extract your own blood and they inject it directly into your spine. So they take it out of… they took it out of my hand, and they had a tube and they just injected into my spine. And that didn’t work. And so then they had to do a second one, and at that point I got an infection in my spine.
Brianne: Oh my goodness. Okay.
RAA: Yeah. And so this was with a 10 day old baby.
Brianne: Right. With a newborn.
RAA: Yeah. And, I was in the US at the time, so of course you don’t have maternity leave. You have to go right back to work and everything.
Brianne: Yeah. I was going to say were you still in the hospital at that time, or had you gone home?
RAA: No, I’d gone home. And I went back to the hospital, got a blood patch, went home, went back to the hospital, got another blood patch. I went home, but then I had like a week left for my maternity leave, which was unpaid, by the way. So I had to go back to work. I didn’t really have a choice. And so you have no… what do you call that? Like convalescence, is that what you call it? Like no…
Brianne: Like time to get better.
RAA: Yeah. You have no time to rest and to just get used to having a newborn and figure out nursing and all of that. So it was just the stress of all that. So I go right back to work. And so after that I couldn’t… I used to run and I couldn’t run anymore because my back was in so much pain. And so after that I was kind of okay, like my health was okay. And then I moved here to Senegal, I guess maybe three years after that. And then I started… I was working out like crazy. I’m just a crazy worker-outer, like six times a week. And let me think. I’m trying to think of what happened. I remember being tired a lot, and I was having a lot of insomnia. And I remember being tired a lot, but I would just put it down to stress. At that point, I was a single mother, and I thought I was just stressed. It’s just stress. And I think it was actually. And then I had my second child, and I was like, “No epidural at all.” I told my Gyno… I was like, “No way.” And she agreed with me. Then it turned out that the cord was wrapped around the baby’s neck and so she wasn’t moving. And so we had to do an emergency C-section, and so I had to do an epidural. So that was that. And then I guess like a month after she was born, I started getting really sick. And so living in West Africa, of course, like with… I had fever and whatever, so they test for malaria. That’s like one of the first things they test for here. And so I tested for malaria and came out negative.
Brianne: Okay.
RAA: So, I had a great doctor, absolutely fantastic doctor.
Brianne: And how does the healthcare system there work? Just compared to the United States. That’s a whole other thing.
RAA: Well, first of all, it’s a lot cheaper.
Brianne: Sure, sure.
RAA: Like a doctor’s appointment is like $50. You can pay out of pocket, and it’s totally feasible. And here, it’s really nice, we have a system that’s called SOS doctors when they can come to your house, which is really fantastic. Yeah, and that’s only like $60. It’s really great. So if you’re not feeling well, you don’t have to go to the doctor. I mean, those aren’t specialists, those are just general doctors.
Brianne: But that’s a normal system there.
RAA: Oh, yeah, totally. Yeah, yeah, yeah. Totally. It comes from the French system. It started in France, and then it came here. It’s a Francophone country, so a lot of the systems are based on France. And so tested negative for malaria. I was feeling better and then I was feeling worse. Tested for malaria again, negative. And all this while I have a six week old baby.
Brianne: Yeah. Not easy anyway. Not easy under the best conditions.
RAA: Well, I had already split up from the father, so I was really on my own. And so with two kids, my son was like six or seven. And… I’m trying to remember all this stuff.
Brianne: I know it’s hard.
RAA: Yeah, and so I just kept getting sick. And so I was getting better, be better for a couple of days, and then I’d get sick again, but with fever, like malaria symptoms.
Brianne: So was that like fever and sweating and fatigue and body aches kind of stuff?
RAA: Yeah. Malaria is like the worst thing. And finally, one day… and luckily at that time, my mother was living here in Senegal. And so she was over at the house, and I was not feeling well. And this had been going on for about a month. And I wasn’t feeling well and the baby was crying, and she brought her into nurse and I was like, “No, I can’t,” because my head was like about to burst. And so she got worried because she was like, there’s no way that she’s accepting to not nurse the baby.
Brianne: Like that was really out of character for you or a big change.
RAA: Yeah, it was out of character. And so she called a friend who called a friend who knew a doctor who had a clinic, and they rushed me over to the clinic. And it turned out I had cerebral malaria. And basically the doctor said, “If you hadn’t come in right this very minute, you would have gone into a coma and died.”
Brianne: Holy cow.
RAA: It was pretty major. I continually tested negative for malaria, but I had it and it just went to my brain. So yes, it was really horrible time, just emotionally. And I didn’t want them bringing the baby to the hospital because hospitals are full of diseases and flying in the air viruses and whatever.
Brianne: Yeah, lots of sick people.
RAA: Yeah. And so I didn’t… she was a newborn. She was only a few months old. So I’m in the hospital, and they treated me and it was fine. It was horrible treatment because they do that… what are they? A spinal tap? Is that what it’s called in English? So it’s a spinal tap, which is really, really painful. And it was just a whole… the whole thing was just awful. And then they’re like, “Okay, you’re better. Go home.” And I go home and like three days later I get sick again. And I go back into the hospital, and I had meningitis.
Brianne: You’re like, “How does this even happen?”
RAA: Yeah. So I laugh about it now because it’s just absurd. It’s just like, “What the heck?” I break up with my husband while I’m seven months pregnant. I come home. I was like… all these other issues being nine months pregnant alone with my kid already. Also in the meantime, I changed jobs. I was at the same job, but I had a different position, which was more responsibility. And so I was just… had to… I dunno.
Brianne: It’s a lot.
RAA: And the last two weeks, the baby was turned around. She was breech. And I couldn’t get maternity leave because I was working at an American school here. So they only… same sort of stupid maternity leave principles as in the US. And so and my gyno was like, “You have to take off work. What is it with these Americans?” And I’m like, “I don’t know. I can’t take off work.” And so it was just like an accumulation of just pure unadultered hell.
Brianne: That’s so many stressful things all together.
RAA: And so at my job, we only had a certain number of sick days that we could take. And I had taken all of mine, obviously, because I was in the hospital. And the doctor was like, “You need three months bed rest. The stress of the divorce, the C-section, cerebral malaria, meningitis, all in the space of like four months.” He’s like, “Three months bedrest.”
Brianne: Don’t do anything.
RAA: And my boss was like, “You can take three months, but you’re not getting paid.”
Brianne: Yeah. Great.
RAA: So I had to go back to work because… I had been married twice, and I have two kids with each marriage. No, I’m sorry, one kid with one each marriage. Yeah, sorry, I don’t have four kids. I olnly have two. But neither one of them contributes financially, so I’m just like…
Brianne: You’ve got to work.
RAA: What do you do? Yeah. Got to work.
Brianne: Yeah. And just before you get to that, what were the treatments themselves like? So the treatment for malaria and then the treatment for meningitis, because obviously letting your body recover is its own thing, but there’s still a medical intervention that has to happen first, right?
RAA: Yes, of course. Yeah, of course. Yeah. Yeah. And the thing is, I couldn’t even… I wasn’t even over the treatment for the cerebral malaria before I had to go into the treatment for meningitis. So my body was constantly… I mean they couldn’t even find any veins because I was on constant IV. They couldn’t find any veins anymore. They had to use the needles they use for babies because they just couldn’t… I came out of there looking like a drug addict, basically like I’d been shooting up because I just had bruises all over my hands, my wrists where they had injected me. And so I just didn’t even have the chance to… my body just didn’t have a chance to rest.
Brianne: And like you said, the C-section on top of that or before that.
RAA: Yeah, on top of that. And then coming home, and then having a baby who wasn’t even six months old, and going right into nursing full time, and having the seven year old all by myself. And so it was pretty rough. It was a lot of stress. Now I look back like whatever.
Brianne: That’s what you lived through.
RAA: Well, you just deal with it. That’s how I look at things. And people were like, “How do you do it?” And I’m like, “I don’t know. I just do.” You just go on. There’s no point in complaining because this is it. It was… I don’t know. So I just kept going and going, and I started working out again. And my life was pretty okay. And then I think… but then I remember I started being really tired. That was the first thing. I started just being really, really tired. And for no real reason. And it was kind of like I started writing down on my to do list… I started writing down sleep on my to do list.
Brianne: Like, “Make time to rest. You need it.”
RAA: Yeah. But, and I remember everybody around me was like, “Oh, you’re so tired all the time.” And, but I was still super active. I was always still just like, go, go, go, go, go, go all the time. I was doing this activity and that committee and this whatever. And I think it was probably in… well in 2010, I think, I remember I did a… because I used to be a really big swimmer, just like avid slimmer, just addicted to swimming. And I did a 5k ocean swim.
Brianne: That’s a lot of swimming.
RAA: In the ocean, in the open ocean. And I remember that it took me a long time to recuperate. And it was the second time I had done it. And I thought, “Oh, it’s because I’m older. I did the last one four years ago, so…” And now looking back I realize, no, I was already sick then. I didn’t know it then. And I realize it was just… because it took me a long time to recover, just the muscle soreness. And I’ve done marathons. I used to run 5k’s and 10k’s when I lived in New York. I was just really used to doing those sorts of activities.
Brianne: So you knew what recovery looked like. Like you expect to be worn out afterwards, but you don’t expect to be dragging and dragging for days or even weeks sometimes.
RAA: No, exactly. And actually the thing is oftentimes after… those types of events for me were like a drug. Like I did a marathon in 2002, I guess, and I didn’t need any recovery time. I was just like, boom. It was like nothing. Yeah, I felt great. And after I did the first 5k ocean swim, fine, no big deal. Boom. Right back to swimming, right back to kickboxing and aerobics and all the other stuff I was doing. But this time, it took me a long time, and I didn’t even get back into the water for like months afterwards.
Brianne: And what did that feel like? What did the recovery time… what was happening? Or was it just like more tired, more heavy? Because you said you didn’t really notice right away.
RAA: My muscles were really, really sore, and it was starting to be really painful. And I was just… my body just felt really heavy. I did all the normal things. And I was wondering, I was like, “Well, I’m eating like I normally eat…” but it was one of those things… you’re just like, “Okay, whatever. Just move on.”
Brianne: Just keep pushing or try harder.
RAA: Yeah. Yeah, and for me, that was always my mantra. It was like, “Keep pushing, keep going.” I was always the one who was pushing everybody to work out, pushing everybody to do more. And I was always the one who was like, “Okay, everybody, Sunday, my house, aerobics. Let’s go. High impact. Let’s go.” I was the one who got a group of friends together to do this ocean swim. I’m like, “Alright ladies, let’s go. We’re going to train.” I had the training schedule up. That was me.
Brianne: You’re like the most intense exerciser or in the group for sure.
RAA: Yeah, totally. I got my son kickboxing when he was like seven. I was just absolutely crazy, yeah. And I think for me that’s when it kind of hit me when I wasn’t able to… I think, because it started… maybe 2012 when I really, really started to notice that I could not work out like I usually did. And 2012 was probably when the pain started. I used to wear a weighted gloves for boxing, and I couldn’t do it anymore.
Brianne: And how did the pain start?
RAA: I don’t know. It just started. It just started. I just noticed… like I’d bump into the doorframe…. so I’ve always been a little bit clumsy, despite being athletic, I’ve always been kind of clumsy. So I’d bump into something, bump into the doorframe and was like, “Oh, that hurts.”
Brianne: Does it hurt more to touch your skin almost? Like light touch would hurt more?
RAA: Yeah, any touch would hurt a lot. And if I was sitting down in a hard chair or a… what do you call those? Cast iron chairs, I think it’s called. It would just hurt.
Brianne: Like patio chairs and stuff?
RAA: Yeah, like that. Yeah, and that hurting. And, I just started to get really, really tired. And so I thought at first maybe it was… because in my family there’s diabetes, there’s thyroid issues. So I went and got those tested right away. I thought maybe it’s something to do with that. And also I started gaining weight. And I’m like, “How could I be gaining weight? I’m still working out like crazy. My diet hasn’t changed.” And I knew something was happening. And of course, everything comes up normal. Did all the blood work. Everything comes up normal except for my magnesium was low or something. I don’t know if I started taking magnesium right away. I don’t remember. But, I talked to a friend of mine who was a pharmacist, and he’s like, “I know this doctor who’s really good. Go see him.” And so I went to see him. No, I’m sorry. Before that happened, I was having all these symptoms, and I knew something was wrong besides… it went beyond just stress and beyond all that. And, one day, I think it was June 3rd, in the morning, I couldn’t get up. I couldn’t move, like literally couldn’t move. I couldn’t lift my leg. I couldn’t lift my arm, couldn’t lift my head, nothing.
Brianne: And I know that’s impossible to describe, but how does that feel? It’s like a heaviness and like you’re… like being really sick kind of, right? Like your muscles aren’t responding almost?
RAA: My reaction was I’m paralyzed. That was my first reaction. The first thing that went into my brain was I’m paralyzed. Because it was like I was sending these signals from my brain to my body, and my body wasn’t reacting. And I remember in my brain it was like, “Okay, arm move.” And my arm wouldn’t move.
Brianne: That must have been scary too, just because it’s that dramatic.
RAA: Well, it’s really frightening. It’s really frightening. And now I look back, I see the workup to it, but even… it just hit that hard.
Brianne: Yeah. It’s still a dramatic change. Even if you were tired and kind of achy before, this is still a really big difference from that. Of course.
RAA: Yeah. Yeah, and I couldn’t move, and I called… in the morning, I’m usually the first one up, and I called and called and called, and got my son, who was probably, I guess he was like 12, 13 at the time, so he was big enough. And I called him in the room, and I’m like, “Lift my arm for me.” And he lifted my arm, but I couldn’t really feel him lifting my arm. And I’m like, “Lift my leg for me.” And he lifted my leg, but I couldn’t help him. And he told me it felt like dead weight. So it got me moving. And it happened again. In the beginning of my illness, it happened quite often that I would just be stuck. That’s how I described it. I’m stuck.
Brianne: So you would wake up like that?
RAA: I wouldn’t necessarily wake up like that. No.
Brianne: So it might happen at other times too.
RAA: It would just happen at other times, yeah, like if I would lay down… because I always push myself too hard. Because in the beginning, I wasn’t pacing because I was learning about pacing. I was learning all this stuff.
Brianne: Right. Well, it’s the opposite of what we’re told, and especially when you’re really active and your doctors are telling you that being active is the answer.
RAA: Yeah, exactly. And so, like I said, I still had to go to work. I’m a single mother with two kids. Who’s going to pay the rent? Who’s going to put food on the table? Yeah, I didn’t really have choices. And I still had that mentality, “No. Just go, go, go.”
Brianne: And at that point, did you go back to a doctor? Like that morning when you felt paralyzed?
RAA: No, I didn’t see a doctor right then.
Brianne: Okay. So you’re still pushing through and don’t really know what it might be that’s going on?
RAA: Yeah. And I was looking for a doctor and that’s when I spoke to my friend who’s a pharmacist, and he was like, “I know this doctor. He’s really good.” So I went to the doctor and he diagnosed me… well, first of all, he did that knee jerk test. That knee jerk test… is that what it’s called?
Brianne: Like for your reflexes?
RAA: Yeah, for reflexes. And my knee didn’t jerk, like my knee didn’t move.
Brianne: Yeah. That happened to me when I was in the mold house actually.
RAA: Oh, really?
Brianne: Yeah. It’s weird. And you’re like, “I know it’s supposed to happen, and it didn’t.”
RAA: Yeah. And he was actually kind of frightened. He was like, “I’ve never seen that before.” He was like, “You are in a really bad state.” And, he was old. He was like really, really old. He was like 75. I guess I shouldn’t say that, should I? Not very PC. But I’m just saying that because he’s had a lot of experience.
Brianne: Yeah, he’s been practicing for a long time.
RAA: For 50 years. And he was like, “I’ve never seen a knee that doesn’t… there’s no reflex.”
Brianne: Yeah, it’s weird.
RAA: It was really weird. I was really, really at like rock bottom. And so I guess it was like… that was June, so I did have summer vacation. I don’t know if I mentioned I’m a teacher by the way. I don’t know if that came up.
Brianne: Yeah, you said you worked for a school.
RAA: Yeah. So, I’m a teacher. And luckily it was summer vacation, and so I had some time to think on what he had said. Oh, sorry. He diagnosed me with dys… dys… how do you say it? I’m not sure how you say it in English.
Brianne: Dystonia is a thing, which is like a movement disorder. It’s painful and that could be it.
RAA: Right. So that’s what he diagnosed me with. And so he put me on antidepressants.
Brianne: Okay.
RAA: Because he was like, “Well, are you depressed?” And I’m like, “Well, yeah, but it’s not necessarily the cause.”
Brianne: Like I’m not sure that came first.
RAA: Yeah. And at that time I didn’t have the knowledge that I have now. Now, if a doctor tells me, I can explain myself. I can explain the difference between ME and depression. Now, I have the words for that. But at the time… because I have suffered from depression in the past, I knew this wasn’t depression, but I didn’t have the words to say it. So I said, “Okay, I’ll take the antidepressants,” even though I’d never taken them before despite having bouts of depression. Just to see. And obviously it didn’t work.
Brianne: But this is one of those things that I just wanted to add. This is one of those things that I think can be really interesting. I think because there isn’t really a good understanding of why antidepressants are effective in certain people or whatever… antidepressants are used to treat so many different symptoms really, and I think doctors do a bad job of explaining that to people and navigating that. I think for most of us it would be really different if the doctor was like, “Listen, I don’t really know what’s going on. I know that sometimes antidepressants help with a lot of weird stuff, so why don’t we try them?” That would be really different than when doctors are like, “Well, maybe depression is causing it. Let’s treat the depression.” And then it feels like exactly what you’re saying. Like, “Well, I know that what I’m feeling isn’t how depression feels. So that’s not helpful.” It’s just this weird thing. I’m really frustrated right now by the way that that happens so much. So I’ve been thinking about it.
RAA: It does happen. Yeah, it does happen a lot. And I think that that’s why it’s so important for us as patients. I don’t know if that’s the right term, but us as suffers to be well read and to know what is out there. I saw another doctor… I’m jumping ahead in time, but I saw another doctor who knows fibro because… I’ll go through my other diagnosis in a minute. But, I talked to him about Cymbalta, I think it’s called. And Cymbalta is known to work for certain people who have fibro. And he was going to… he told me he was going to suggest that as a treatment, but I already knew what it did and how it can work and the good and the bad of it. I already knew that. And luckily I did because he didn’t spell it out. For him it was just like, “Take this. You’ll be better.”
Brianne: Yeah. Take this, see what happens. Yeah. And, it’s like in the first part of your story, you didn’t know how to talk about it or what questions to ask, and that’s what’s so hard. You get further into being sick and you start to learn about it. Kind of like you’re describing right now. But it’s so frustrating to think back and realize like, “Man, that doctor wasn’t helping me the way that I needed to be helped.”
RAA: No. Well, because I think that they just don’t know. It’s like you said, they don’t know. So after that first doctor, I started doing a lot of research, and I came up… on Yahoo, there was an article, and it was a picture of a woman. And I was like, “Oh, I like her hair,” something stupid. And then I read the headline, and it was something about an illness. And so I read it, and it turned out that it was Jen Brea actually. And it was an article about her. She had ME and all this stuff. And so I’m like, “Okay, let me research this.” And so they have a checklist, so I went through the checklist because there’s no diagnostic test for it. And I went through the checklist, and I called the doctor who’s also a friend, and he’s the one who helped me through the whole cerebral malaria meningitis thing. And I contacted him, and I was like, “Look, this is what I found. Can we do this test together? The checklist together?” Because I had already done it on my own, and I wanted to do it with him.
Brianne: Right. You’re like, “I’m not coming up with a diagnosis. I’m asking you to look at the criteria with me.”
RAA: Yeah, yeah, exactly. That’s what it is, the criteria. Yeah. And so we went through it, and then it suggests to do all these other tests to make sure it’s not MS, it’s not this, it’s not that, it’s not this, it’s not that. And so we did that whole thing, and that’s how we came to my diagnosis of ME, basically.
Brianne: And he was good about that, it sounds like.
RAA: Yeah, he’s really open. He’s really good. He was fantastic. And so… I mean, he’d never heard of it before.
Brianne: Right. Had he heard of chronic fatigue syndrome? Do you know? Just as their related.
RAA: Well, he’d heard of CFS, but he had the idea that CFS, like many people have, “Oh, you’re just tired.”
Brianne: Right. Right. It’s not like a bigger systemic problem.
RAA: Right. It’s not a really big deal, and you’ll get over it. You’re just tired. It’s just stress. You just need a vacation, whatever they all say. But he was very open, and so we did all these tests and everything. But at that point, I was pretty much housebound. Like I said, I went to work, came home like crawling. I moved house in the meantime, so I could be close to my job, so I can actually walk. And so I would walk home, but I would actually have neighbors who would help me walk to my door and I would just fall into bed, you know?
Brianne: Yeah. Yes. I know exactly what that feels like.
RAA: Yeah. And so I did get a lot better. I’m obviously way, way better than I was. But then my partner at the time had a friend who was a doctor, and so he would come, and he got me to do other tests also just to rule out other stuff. And I got that brain thing. I went to the neurologist and they do that icky brain thing where they put those things on your head, stuck to your head. EEG is it called? Is that what it’s called?
Brianne: I actually don’t know what it’s called, but with sensors, right? Like lots of…
RAA: Yeah, the sensors. Yeah, did that. And that was horrible because I have a lot of hair, and it was just so gross trying to get it out. And then I went to do… and that’s when they did the whole test with the needles… I just went through a whole bunch of other tests.
Brianne: Like nerve conduction and stuff.
RAA: Yeah. I went to a cardiologist, and he diagnosed me with POTS. He did the tilt table, but without the table…
Brianne: Lie down, sit up, stand up. Yeah.
RAA: Yeah. And then the neurologist, she checked the pain points and fibro, and I had the required number or whatever. And so she was like, “You have fibro.” But at the same time, she said… well at that time I was using a cane. But she still said, “Well, maybe what if you try just to not use your cane?”
Brianne: Yeah. Just push yourself. Oh God.
RAA: Yeah. And it’s so funny because on one side, they listen to you and they understand. I don’t even know if understand is the right term, but they understand you, but then they’re just like, “Well, just get rid of your cane. It’s okay. Just go workout. Try to go work out.”
Brianne: Like the cane is the problem.
RAA: Yeah. It’s your crutch, literally.
Brianne: The cane is not the problem.
RAA: Yeah. So but anyway, her theory was that everything that I had been through with my spine, with the botched epidural, and the cerebral malaria, and the meningitis, and the not having any rest time. She said really not having that convalescence that was really detrimental. My body did not have time to recuperate. And then just working and then just added onto being single mother with two kids.
Brianne: Right. Like there’s no time to rest in that kind of a schedule anyway when you have two kids and a full time job and everything like that.
RAA: And the fathers not being around, not even around as a moral support, not even. You can’t even call and be like, “Hey, this is what’s going on. Can you talk to your son and deal with that for me?” No. I had none of that. Like I said, I don’t complain about it. It was just…
Brianne: Yeah. Being honest about how hard something is, I don’t think is the same as complaining. I think we get to do that.
RAA: Yeah. I never did complain. And so what was really hard is when I got sick, that was really… that was difficult. And it still is. It still is difficult. But just giving up who I was… and plus I got sick when I was 41, I guess. And so, I don’t know. I’ve always wondered is it harder when you’re older or when you’re younger? I don’t know if there’s a definite answer.
Brianne: It’s an impossible question, I think.
RAA: Yeah, and it depends on the person. It depends on your perspective, I suppose. But, I was older, so I had my kids, so I’ve lived a life. While younger people will think, “Well, I’m not going to have kids.” It’s just different perspectives. I find that getting sick when I was 41, it was so, so difficult because I was this whole person already. I was a full blown adult. My personality was there. My character was there. I knew who I was, and then I wasn’t. And, I remember I was on this site, heal click, and I remember talking about it on there. And there’s this one woman, I will always remember her, and she gave me the greatest advice. And she said, “You have to bury that person. You have to mourn the person you were. You have to bury that person. And you have to just leave that.” She’s like, “It’s a corpse, basically. That person doesn’t exist anymore, and you have to say, ‘This is who I am now, and this is who I’m going to be from now on.'” And I think that was… it’s difficult. It’s not by any means easy, but that really, really helped me. And you should say, “Okay, you know what? I just have to let that person go. That is the old me. This is the new me, and that’s it. And I have a new normal.” I always called it my new normal. And now my new normal has just become normal.
Brianne: Yeah. I think that resonates. There’s so much grief. And I think it can be really easy to get stuck there, which I feel like is kind of what you’ve been saying about the letting go. It can be really easy to go, “Well, maybe I can just do a different version. Like instead of swimming five kilometers in the ocean, which is very far, I can do a smaller version and find a way to still get that feeling.” And it can be easy to kind of get trapped chasing those things, which doesn’t mean that you can never find any new things of course, but it’s hard. I’m just agreeing with you, I guess.
RAA: No, it really is hard, and I think in a way it is… well, I don’t want to say it’s harder because I don’t like to compare, but I find that being older it seemed like it’s harder because you have so much to let go of… so much of yourself to let go of, and so many people around you who’ve known one version of you and they don’t know how to deal with the new you. I really basically lost all my friends. All the people who were friends, quote unquote friends, totally dropped me, like completely dropped me. So there was also that isolation. I know a lot of people live with isolation all the time, and I read about it, people post about it, and it really is an issue. But that isolation that you feel, gosh. And I was very lucky because I had a partner at the time who knew me before I was sick, and so going through those first couple of years, he was really, really supportive, and he was really trying to find solutions for me. And he was very understanding. And, he was really the only person who stuck by me. And I have other friends who live far away, and so they knew I was sick, but they didn’t really understand because they lived far away, so they didn’t see me.
Brianne: And if you don’t know someone who’s been through something like this, it is really hard to imagine it if you don’t see it. I say this all the time because it’s true, we just don’t have media representation. So there’s no like, “Oh, like that character in that movie.” It’s not a thing. People have no idea.
RAA: Yeah. People have no idea. And it’s not something as well known. Like if you walk up and you say, “Oh, I have cancer,” people automatically can identify. Like not identify personally, but they know what it is and they know what it entails.
Brianne: And even if some of their ideas are wrong, the general picture.
RAA: Yeah, yeah. And what I found is that unfortunately I had one friend here who I was still friends with, and I also worked with her, and she got cancer. And she was one of the friends who had kind of more or less left me in the whatever. And she got cancer. And so I was around, I would go see her, and we would talk about it. And she had really… it was horrible horrible cancer. And she actually apologized to me, and she said, “I didn’t realize what you were going through.” She’s like, “Now that I’m sick, I can imagine what you were going through, and we all let you down.” And that’s what it took for somebody to… it’s like they have to… even though it’s not the same illness, her life still completely changed.
Brianne: It’s like an exposure to this other other way of living. Again, yeah, it’s not the same, but it’s still a drastic change. All your relationships change. Your ability to…
RAA: Your future changes. You’re asking yourself questions all the time, “What do I do?” And she was also a single mother, so she was like, “Okay, what do I do with my kids? What kind of parent am I going to be to my kids?” Because you have all those questions. I don’t know. It’s so hard to like, “Okay, how am I going to date? How am I going to parent? How am I going to travel?” Everything revolves around that illness, unfortunately, because you have to take so many things into consideration.
Brianne: Yeah. And you have to plan so carefully just to keep going.
RAA: Yeah, yeah, you do. You really do. And the same thing… I had another friend actually who got ill, nothing super major, but she was really, really sick. I think she got a really bad case of the flu or something, and she was down for like two weeks. And she called me afterwards, and she was just like, “God. How do you do it? I went through hell. I thought I was going to die,” and she was like, “You’re telling me that this is how you live every single day of your life? How do you do it?” I was like, “Well, you just do.” She was like, “I would’ve killed myself. There’s no way I would’ve done that.”
Brianne: You’re like, “That’s not helpful.”
RAA: No, it wasn’t helpful, but it was just her…
Brianne: Yeah. No, I know. Processing it and realizing what she hadn’t seen before.
RAA: Yeah, exactly. Exactly. And so it takes somebody being that sick. She was saying, “I couldn’t move out of bed. I couldn’t eat anything.” I was like, “Well, there you go.” She was like, “Is this really what you lived through?” Because she was achy and she was whatever… because I always say to sort of describe how I feel in terms that people can understand. I say, “Okay, like every morning I wake up like I’m hungover, even though I haven’t had anything to drink. I wake up hungover with the worst flu I’ve ever had. Plus pain.” That’s kind of it. That’s it. It’s just you’re hungover, you can’t move, you’re achy, your throat hurts every single day, every single day.
Brianne: And it just goes like that.
RAA: And I wanted to tell you also, when I first read the name of your podcast, No End in Sight, I really connected with that because it’s like no end in sight.
Brianne: Yeah, yeah. That’s how it feels when you… it’s after you grieve, maybe, you’re like, “Oh no, this is it now. This is my new normal,” like you said.
RAA: Yeah, yeah, yeah. Because there’s no end in sight. There isn’t. Something that I think all of us… and whatever your chronic illness is, it doesn’t have to be ME, it doesn’t have to be fibro, but whatever your chronic illness is, it could be diabetes, whatever. It’s like there is no end in sight. This is something that you’re going to have to deal with for the rest of your life, and it’s going to happen.
Brianne: It’s taking up space in your brain.
RAA: Yes, yes. And also it’s the impact on the people you live with, whether it be your partner or husband or children. I see the effect it has on my children. And actually, I really want to write a piece on that. I think I mentioned to you before that I wanted to start writing, but I think there’s something to be said about parenting with ME. And it doesn’t have to be ME, like I said, it could be any chronic illness, but I see the effect it has on my children. And, it’s hard. It’s hard on them.
Brianne: Yeah. Yeah. And I’ve definitely… I don’t have kids personally, but a few other people that I’ve talked to… because this is also an age thing. Like for you it happened kind of almost at the same time that you were becoming a parent. I know you got much sicker when your second kid was born. But I’ve talked to people who became sick at sort of different phases in their parenthood. So some people who chose to have kids after they were sick, and then some people who got sick when their kids were like teens or maybe even older and kind of everywhere in between. And it really shapes that experience. And I think that’s important to talk about, even though I personally am not the one to talk about. But yes, write about that. Because it matters. And I think people are like… there’s so much guilt in there.
RAA: There’s a lot of guilt. Oh God, that’s the first word that comes to my mind. It’s funny you should say that because the first thing that comes to mind, guilt. Yeah. It’s guilt. Yeah. And see, my son, he remembers me when I was well, when I was super active. And because I didn’t get sick until he was like 12 or 13, like really visibly housebound ill, whatever. But with my daughter, she’s seven years younger than him, so she doesn’t remember me when I was well. And so we’ll pull up photos of me from before, and she was like, “That’s you?”
Brianne: Yeah. You’re like, “That’s another person.”
RAA: That’s another person. And now she’s getting to be… she’s a preteen now, and so she’s getting into clothes and this and that. And so I started telling her… because I always used to wear high heels, and she was like, “You used to wear high heels?” I’m like, “Yeah, ask your brother.” And he remembers that I always wore high heels, because I never wear them anymore.
Brianne: Yeah. I can’t imagine wearing them now or I can’t imagine wearing them regularly.
RAA: I wore them every single day. I was a student in Paris, in the Metro wearing high heels, four inch heels. I would go to work wearing my heels. Even here, I don’t know if you could imagine what the landscape is like here in Senegal, but my street is just sand, literally sand. We don’t have a lot of asphalt roads. And so even in that, I would still wear heels through the sand just walking on my tippy toes.
Brianne: Yeah, that would be a workout on its own.
RAA: Yeah. I still do, if I go out. I still wear heels to go out, but I wear flats to go, and then once I get to the place I put on my heels because I know be seated most of the night. But it’s like just pure vanity.
Brianne: Yeah. Which is fine. I think we get to keep that stuff. I’m pro vanity. We give up so much. Like I’m in my pajamas. I’m in my pajamas most of the time now. Get into it when you’re able to. It’s nice to feel like… I don’t think it’s the same as trying really hard to keep your old self, but it’s just nice to feel, I don’t know, whatever we associate with normal or healthy or whatever. It’s like, “Oh, I have makeup on. I did my hair. I’m here.”
RAA: I totally do. Okay, where I live, we have tailors, like people who can make our clothes. So I designed all these dresses that are comfortable and are pretty with these great fabrics, and I make my own designs and everything. And so I have my clothes made so I feel like I look good. I also have these dresses made so you can’t really see my legs, if I’m in like a zombie walk day, sometimes I walk like zombie. But at least I can have some semblance of normalicy, I guess it is.
Brianne: Yeah. Totally.
RAA: Even if I am walking my cane at least I can sort of…
Brianne: It’s feeling like that you got to keep that part of yourself.
RAA: Yeah. Yeah. And I don’t know, and I think… I am able actually to go out. I used to dance, as well. Another physical activity, I dance salsa and stuff, so I’m still able to go out and dance once in awhile.
Brianne: Yeah.
RAA: Which I’m really, really thankful for. But I can do one dance, then I have to sit down. I sit out like 10, and then I go dance another dance, and I sit out another 10 dances. But I can still do that. And so I can still wear cute jeans and a cute top, and I will put my heels on, but I can’t dance in them. I dance barefoot. I’m known as the barefoot dancer, but it’s nice to be able to… I’m really, really thankful to be able to because I know there’s so many people who can’t do that at all. But if I just do it once a month… my personal goal is like, “Okay, get out of the house. Even if you don’t dance, just go out of the house. Go put some makeup on. Get some cute heels on and go.” Because it’s your personal… it’s your mental health as well.
Brianne: Yeah, definitely. I definitely think that. Sometimes, it depends, but sometimes you just can’t take care of them both at the same time. And that’s okay.
RAA: You can’t. No, you can’t. I actually, and I guess this does speak to my vanity, but also I’m getting older… but I had eyeliner tattooed on because I can’t do it every day. I can’t put makeup on every day, and I can’t… usually at night when I come home, I’m too tired to take it off. I’m like, okay, if I have it tattooed on, at least it’s there.
Brianne: Like, it’s handled. You don’t have to think about it.
RAA: I don’t have to think about it. And just throw some lip gloss on, and I can be presentable. But see, the problem I find with that is that the people oftentimes don’t realize how sick I am.
Brianne: Right.
RAA: It’s kind of like a catch 22 because when you do go out of the house, you want to seem, I don’t want to use the term normal because I know that’s not really… but you want to seem like I guess normal. I don’t know.
Brianne: It’s like you don’t want to stand out. You don’t want to be obviously identifiable as a sick person, whatever that means. I don’t know.
RAA: Whatever that means. But also, I don’t want to be… my thing too is I don’t want to be pitied. And I think it’s a fine line that we walk when we’re chronically ill because we want people to understand, but we don’t want to be pitied. So I find it’s like I want people to understand, and I try to build awareness around me, like at my job, but I don’t want people to pity me and be like, “Oh, poor thing. Oh, whatever…” And I really hate it, but I know the person means well. I don’t get upset about it, but I just want them to understand. And so that’s sort of a fine line.
Brianne: Yeah. I also think it’s interesting when it comes to stuff like mobility aids and disability… I don’t mean blending in as in nobody can know that you’re disabled or have anything going on, but sometimes it’s just nice to look awake, even. Maybe I’m using a mobility aid, but I look like a person who knows what’s going on around me, and I don’t always look like that. There’s just kind of subtle things.
RAA: Plus where I live, in this society I live in, you don’t see disabled people. You don’t see them. You don’t see people in wheelchairs. You don’t see people with any disability at all, with canes or anything. Even mentally challenged people, you don’t see them at all. And that’s a cultural thing. So if I’m walking around with my cane, people are kind of surprised, and they’re looking at me like, “What is wrong with her?” Not in a bad way.
Brianne: It’s just so unfamiliar.
RAA: Yeah, it is really. Because a lot of people, unfortunately, here who have disabilities are beggars in the street.
Brianne: It’s a larger problem, in terms of support networks and stuff.
RAA: Yeah. It doesn’t really exist here. And children who are born with disabilities are hidden, oftentimes. They’re hidden. And so a person in a wheelchair is oftentimes a beggar. I’ve lived here now for 16 years, and I think I’ve seen one person in a wheelchair who was actually working in a company. Once, and that’s it. It’s just not done. It’s something that’s just a cultural thing. It’s a developing country, so the mentalities is… hopefully it’s developing towards acceptance and inclusion. Yeah, there’s a lot of work to do. There’s a lot of work to do here on a lot of levels. And so I’ve been thinking…. talking about awareness, I had one doctor who wanted me to create an association here for ME and fibro because most doctors here are familiar with fibro… and even in the Francophone world in general, ME just doesn’t exist. Nobody really talks about it, but they’re familiar with fibromyalgia, and here doctors are to a certain extent. And so this one doctor was like, “Yes, because you’ve done so well for yourself basically on your own.” And I have become to a certain extent like a reference person. Like I’ve had like someone call me who was like, “I have this patient here and she’s presenting with these symptoms. Can I give you her number? Can you talk to her?” And I’ve already been put into contact with other patients and whatnot. And so this doctor wanted me to create this association just to build awareness and to be a support group because it does exist. There are people here with definitely with fibro, maybe with ME, but…
Brianne: not diagnosed. It sounds like, probably.
RAA: No, it’s not known at all. It’s really not known here. Like you mention it, and they’re just like, “Yeah, whatever.” So that’s something I’ve been contemplating for a couple of years, but it’s just… the paperwork is so difficult, and it’s just…
Brianne: The getting there from here thing.
RAA: Well, also I’m dealing with a very patriarchal society, so even dealing… if I had to deal with doctors here, building awareness with doctors, they’d mostly be men. And that’s a whole other conversation. But there’s a certain attitude towards women, and I don’t know if they would be very accepting of a woman whose not Senegalese coming in and telling them…
Brianne: Right. Trying to educate them medically kind of. Yeah. And that sounds like it’s the kind of thing where there’s so much work involved, not just the paperwork, like you say, but that’s a ton of labor to keep having these conversations and keep working with people and getting rundown by how hard it is and then going back. You can imagine it being a pretty big undertaking.
RAA: Yeah, it would be. It would be, but I still would like to at least have a support group for people, for patients. At least have that. I don’t know how the whole with the doctors would work, but I really think it needs to be done. It really does. But, just the idea of going and talking to those male doctors.
Brianne: That’s not the work you want to do, it sounds like, but the connecting with patients.
RAA: Yeah. Yeah, exactly. Exactly. So, it’s a complex system here. And foreigners are seen as being so different. And so if you’re not Senegalese, then you’re just different. And so even though I am a person of color here, I’m not. It’s weird.
Brianne: Yeah. And like just culturally a different space, so the way that… I don’t even have good words, but I feel like I get what you’re saying.
RAA: Yeah, I think so. Yeah, and here religion plays a big role and the culture plays a big role. And so I’m just like, “Oh, I don’t know if I want to do that. Maybe I’ll just work with patients.” But right now, I don’t really have the time and I don’t really have the energy.
Brianne: That’s another big thing, right?
RAA: Isn’t it though? And I realize also like in the last maybe 10 months, I guess, I’ve been in complete denial, but I realized this like last week that my health is… I’m like on a down… I’m on a decline right now.
Brianne: Do you feel like you’ve been stable in between?
RAA: I’ve been… yeah, for a few years, I’ve been pretty stable. I’ve been… I mean, not well.
Brianne: Like working and resting?
RAA: Yeah. But, I had a pretty good routine. I had a pretty good… pretty predictable because with this illness it’s so unpredictable, but it’s been relatively predictable. Relatively, I could do…
Brianne: Like manageable?
RAA: Yeah, it was pretty manageable. My activity level went up, and I was managing pretty well. I had some dips down, but I would come back up. But now I’ve been on this downward slide. And I guess I was in denial.
Brianne: I think they’re so hard to see because I’ve definitely felt that way before. It’s like months will go by… and I think you just said it’s been almost a year. Months can go by, and then you go stop and just say like, “Wait a minute. Six months ago I was actually using my computer for a couple hours every day, and now I only use it every three days. Something is happening.”
RAA: Yeah, yeah. And I think you’re just used to coming out of that dip.
Brianne: Yeah. Yeah, like that’s normal for a week, but then two weeks go by and then three weeks go by. Yeah, and then six months have gone by.
RAA: Yeah, exactly. And so I’ve had dips that have lasted three weeks or whatever, but then I’ll come back up. But this has been… I guess school let out in June, and I thought, “Thank God, summer vacation. I’m just gonna regroup.” Because I’d had a crappy, crappy time, like six months. I’m like, “It’s okay. I’m going to regroup. I’m going to get back. Whatever, it’s going to be good.” And then I crashed in July. I was basically bedbound for a month, and August wasn’t much better. And I went back to school in September, and I was like crying every morning. I was in tears every single morning because I was just so tired. And then I just realized. I was just like, “Yeah, I think it’s one of those… I’m in a down cycle right now.”
Brianne: Yeah, things are actually harder right now.
RAA: Yeah. And I’m like, “Okay, I have to readjust. I’m going to have to re… I don’t know, re whatever in order to find some kind of equilibrium, kind of balance.” I’ve never had perfect balance. I’ve always kind of felt like I’m just bobbing at the top of the… like my head is just above water. I’ve always kind of felt that way, but at least my head was above water. Like, if that’s my equilibrium, well, that’s where I am. But now I’m basically underwater most of the time and coming up for air like every other day. But so, I don’t know. I have to figure that out. But it’s just so hard because I have to work, and I just want to take off work. I’m just like, “Oh, I wonder if I can get two months off work. That would be wonderful.” But I don’t know. I don’t know. Just keep going. Got to keep on going and see. I dunno. Well, it is what it is, so I just got to figure it out. I just don’t know when I’m going to actually have time to figure it out.
Brianne: Yeah. What that will look like yet.
RAA: Yeah. Well, I’m just like, “What do I do?” Because I had what I did before, and I’m like, “Okay, so what do I do? Do I do more of this? Do I do more of that?” Go ahead.
Brianne: Yeah. Because before… so I think it sounds like pacing made a really big difference for you. And you had tried a couple of medications. Were there any medications that did help before, even if they don’t seem to be helping now?
RAA: Well, mostly my… what I take. Well, so I take Tramadol every day, like 50 milligrams every day, and I take magnesium, which is super important for my pain. And it does lessen my pain, like as far as… if I don’t take magnesium, you cannot touch me without me screaming in pain. So the magnesium does help with that. Anything else I take… I just take multivitamin. I take probiotics. I take Omega3, like high dosages of Omega3. What else? And then I take for energy, I take CoQ10. I think it’s called CoQ10.
Brianne: I think CoQ10, yeah.
RAA: Is that… I don’t know how it’s pronounced. But, that’s basically my daily regimen. And I’ve found that out just through research on my own.
Brianne: Yeah. And trial and error, I bet.
RAA: And trial and error, yeah. I would try something… in the beginning, I really tracked everything in the beginning like my symptoms, how I’m feeling, like every part of the day, like four parts of the day, like morning, noon, afternoon, night with what I was taking, the time of day I was taking it, and the results. I was very religious. I did that very religiously, and it really helped. It really helped me a lot because then I could figure out what worked and what didn’t.
Brianne: Yeah, but it’s a lot of work.
RAA: It’s a lot of work. It is. And there are things I’d like to take. Like I wanna do injections of B12 because that at one point helped me, but I can’t find anybody who will do the injections. And I tried to do it myself, and I can’t do it.
Brianne: Ah, that would be frustrating.
RAA: Well, it hurts too much.
Brianne: Yeah.
RAA: If somebody else does it, it hurts, but I can handle it, but I can’t do it to myself.
Brianne: Like choosing to do it is harder.
RAA: Yeah. But that’s basically… the only things that really I cannot live without are the Tramadol and the magnesium. The others… and, well, probably the probiotics too now, but everything else, I feel like if I stopped taking it, I don’t really feel the difference.
Brianne: Yeah. I get that. It can be so hard to tell with some stuff, I feel like, and it feels like you can get into almost a ritual where you’re like, “Well, I’m just doing it, and these are the things that I do, and hopefully they work together to have a good impact or something.”
RAA: Yeah, exactly. Exactly. I don’t know. Like, Omega3 is it helping me? It’s supposed to help my brain function. So, is it helping? I don’t know. I’m still pretty out of it most of the time, but how out of it would I be without it?
Brianne: Yeah. Like hopefully it’s better than the baseline. Yeah, and that’s what, like you’re talking about the being kind of in decline right now, and that’s what always… I feel like the first thing that I end up doing is going back to that way of thinking because it’s like, “One, can I run any experiments? How do I muster up the energy to run experiments and pay attention and all that stuff?” But if it works or if it helps, then it will be worth it. And then the other side is like, “Do I go back to the doctor and see if there’s anything else we can look into or something else that we can try on the medical side?” It’s all a lot of like proactive stuff. I know you know. I’m just thinking through it.
RAA: No, of course. Yeah, but being proactive is exhausting.
Brianne: Yes, it really is.
RAA: Like, I think you said it earlier, it’s like a part time job really being proactive. It’s kind of like, I mean, I know you’re married now, but it’s like I tried dating, like Tinder and whatnot. And that’s like part time job just trying to date. And it’s the same thing, being proactive and looking into research, and researching and finding treatments, and trying to find new treatments and everything. That’s exhausting, and I wore myself out in the beginning. I was going to all kinds of different kinds of… I was going to healers, like traditional healers that we have here to try stuff. I went to… I don’t know if you know what a marabout is? A marabout? I don’t know what the English equivalent is. I guess it would be some sort of like a… not at clairvoyant, but maybe like a witch doctor. I don’t like that term, but…
Brianne: Yeah, I can look… I’ll look it up after, because now I’m curious, but in that way of thinking.
RAA: Yeah. And a marabout is somebody who’s gonna look at your… like he’ll throw out cowrie shells or read things in the sands and give you things to bathe in, like all this stinky crappy that you got to bathe in. I’ve done crazy stuff, and I’m like, “Hell, if it’ll help, I don’t care.”
Brianne: If it will help, it is worth it. It doesn’t matter how weird it sounds when you try to explain it. That’s what I think.
RAA: Yeah, no, exactly. And, even at one time, this was before I knew I was sick, I went with a girlfriend of mine. And she wanted to go see this like a clairvoyant who like reads your cards or reads the cowrie shells or whatever. Well, I went with her, and he looked at me and he was like, “Do you mind if I ask you something?” And I’m like, “Go ahead.” And he was like, “Take this mirror,” and it was like a piece of broken mirror, and he’s like, “Put it over your belly button under your clothes.” So I put it over my belly button under my clothes, and he was looking at his piece of broken mirror, and he was like, “You’re ill.” He’s like, “You’re very, very ill.”
Brianne: Whoa.
RAA: And I was like, “No, I’m not. I’m fine.” And then that was it. And what maybe like two years later, boom.
Brianne: Yeah, two years later it became obvious that that was true. That would be unnerving.
RAA: Yeah, yep. But I’ve gone to a whole bunch of people, and they’ve given me disgusting things to drink. I had to bathe in, I don’t know, plants and dirt and crap and whatever. But I’m like, “I’ll do it. I don’t care. I don’t care where it comes from. I don’t care. Whatever.” This one guy, he actually sacrificed a… what is it? A Ram, I guess? Was it a Ram? Is that what you call it? A sheep…
Brianne: Yeah, like with the horns?
RAA: Yes. And so he gave me the horn, one of the horns, like wrapped up in a thing, and I had to go bury it at midnight in the sand by the beach. Sounds totally crazy, but I did it. So, I was like… I know for people in the West, it seems so farfetched and everything, but it was… with this friend of mine I told you about earlier who had cancer, she and I both went to this guy to see if he could heal us. And so we both had these things to do. So we’re like, “Okay, girl, we’re together in this. Let’s go.”
Brianne: Let’s try it. Yeah, and it sounds farfetched, like you said in a way, but I feel like no matter where you are, there’s always another new and interesting thing that you can try that you would never expect. People do all kinds of weird things to try to get better, and you just never know. Sometimes weird things work. I do think it’s a problem that some people are really predatory charging desperate people a lot of money, but I also think that weird things work all the time and they’re worth… like if you’re able to try them, and if that feels like a good idea, then why not?
RAA: Well, the way I look at it is like I’m willing to try anything. That stuff I’m not going to do anymore because it was just… it’s very time consuming, and these guys are out in villages, like two hour rides away, and I’m not willing to do that anymore, but I’m pretty much like I’ll try anything. I’m pretty, I can’t say okay, that’s not the right term, but I understand that I won’t be cured. I don’t think I’ll be cured, but it’s about your quality of life. I just want my quality of life to be better, so if I can find something that will help my quality of life and then the quality of life of my children, then that would be great. And if it’s… I tried Cymbalta, that was horrible, the antidepressant for fibro, that was awful, but I tried it. It didn’t work, but…
Brianne: Yeah. It’s like now it’s time to see what’s next when you’ve got the energy to figure it out.
RAA: Yeah. Right now, like I told you, I’m just trying to stabilize right now. I’m just trying to get on… I really just need a rhythm. I’m very off kilter right now. Even with my job because I have a different thing I’m doing at work, and so that is kind of putting me off kilter a bit. Because I work at my school and then I also do workshops with kids at my house, so I work all the time, and I think that is a big factor as well. That’s a big factor as well in my decline, I think, is it’s too much work.
Brianne: Yeah. Like you’re kind of… the pendulum has swung to the side where you’re pushing too hard again, maybe, even if it’s in a different way.
RAA: Yeah. No, I am. I know I am. But it’s just like, “I need money to live.” So yeah, my son’s at university, so it’s expensive, even if he is in France, which is a lot less expensive than the US, but he still needs to live, and he’s still…
Brianne: Needs somewhere to stay. Needs something to eat.
RAA: Yeah. Yeah. Luckily he found a job, like a little part time job, so that helps a bit, but still, it’s just like… and a lot of people with chronic illness, it’s like you think about your future, like I have a job, but I don’t have retirement. I don’t have a retirement plan. You think about your future, you think, “Okay, what happens if I can’t work anymore? What happens?” You think about stuff like that, so it stresses you out in the present.
Brianne: And of course. And is there any kind of disability support that could be available if your health changed in Senegal? I just don’t know anything about that, although I do know that it’s really hard to qualify anyway with ME and fibro.
RAA: No, there wouldn’t be actually because… so I’m an American citizen, I’m also a Senegalese citizen, and with my job I have a Senegalese insurance that’s from a Senegalese insurance company, but they won’t provide any kind of… like if I were to be hospitalized, they cover maybe like $20 a day. So even if it’s less expensive here… you really don’t want to go to a public hospital here. You really don’t. So, and as far as disability goes, no, there wouldn’t be…
Brianne: Like there’s not a system that you would be able to participate in.
RAA: No. There might be, but the amount of money that you would get on disability is so small that it’s just not livable.
Brianne: Right. And especially not with kids, et cetera.
RAA: And it’s a very, very poor country. And people live on so little here that the government doesn’t really have a lot of money, so what they would hand out is like… and I think I do have a retirement plan with my status at my job, but I think my retirement would be something like $60 a month or something like that, which is $60 a month.
Brianne: It’s what it sounds like. Yeah.
RAA: So I wouldn’t get anything disability wise. If I had to stop working for whatever reason, I would probably have to go live in the US, I guess, with my sister, with my mother or something like that because they’re in the US, which I don’t do.
Brianne: Right. That’s not planned…
RAA: Not because of them. Not because of them.
Brianne: It’s a major upheaval.
RAA: Yeah. And I’ve been living on my own… I’m almost 50, so it’s like I don’t…
Brianne: Yeah, that’s not plan B. That’s very far down that list, like plan D, plan E, plan F. Yeah.
RAA: At this point, I really don’t have any other plans. I’m just going to keep working. I did have one doctor who told me, he was like, “If you continue working like this, in five years, you’re going to be in very bad shape.”
Brianne: Yeah. You’re like, “Thank you. Please tell me how I can work less and still pay my bills.”
RAA: And, he didn’t mean it in a bad way. He was just warning, but it’s just…
Brianne: It’s hard.
RAA: Yeah. I do have to figure out… I’m trying to figure out how I can work less and make the same amount of money, so that’s a whole other…
Brianne: That’s a great question, but not one that we can solve in like the next 10 minutes kind of thing.
RAA: No, no, no, no. But it’s something that I really have to think about because it’s like, “Can I live on less? Can I…” But that’s also just added stress, and like today I can’t think about that because when you have your health issues to deal with, there’s so many other things that you can’t deal with. It’s like you can’t handle… like I’ve lived maybe two months with light bulbs out in my house for two months because it’s just way down the priority list. You know what I mean?
Brianne: Oh yeah. Definitely.
RAA: I think we all know what that’s like, and it’s not about laziness.
Brianne: It’s just about what’s important. Yeah. I totally agree.
RAA: Yeah. I’m just trying to figure out how to eat, like how to make it to the kitchen so I can eat something, how I can make it to the shower.
Brianne: And to have a shower, which is tough. It’s just one thing at a time.
RAA: Yeah, exactly. Exactly. Exactly. Which we all have to learn. We all have to learn how to… I think our perspective on things changes so much, like of what’s important and what’s not important, at least in a personal… so it makes it really difficult sometimes to listen to other people talk about their lives when they have these normal lives. And it’s very hard not to be judgy. And I don’t want to be judgy, but I’m just like, “That’s your problem?” But I really try hard not to do that because it’s like each of us has his or her own crap. We all have our own crap, and so I don’t want to judge somebody else’s problems and say, “Oh, that’s not a problem.”
Brianne: Yeah. But it sneaks in sometimes.
RAA: Yeah, but it’s difficult. No, isn’t it difficult sometimes when you hear other people just like, “Oh my God, I can’t go on vacation this year because dah, dah, dah, dah, dah.” And it’s like, “All right.”
Brianne: Yeah, I hear what you’re saying. Because it’s both. It’s like on the one hand that first reaction of just like, “Oh, I remember when that was a problem that I had, and now it doesn’t even rank.” But on the other hand, it’s like getting into the kind of judgy headspace can be toxic for yourself.
RAA: Completely. Yeah.
Brianne: Beause I know you’re saying that too, that you’re saying it’s difficult. But that’s the thing is it’s such a knee jerk reaction because it just reminds you sometimes of how much your life has changed compared to somebody maybe who’s life is the way that you thought yours would go. And you’re like, “Oh my God, things have changed so much that this thing that they’re complaining about doesn’t even matter to me anymore.” But getting sucked in there isn’t a great place to get sucked in, basically.
RAA: Yeah. But that’s when you have to look at the upside of having a chronic illness. In a lot of ways, I think there are upsides to it. There are good things that can come out of it. And I think it does help you have perspective, have a different perspective, and really, really appreciate what you do have and what you can do. And I think you… at least for me, I find that I just appreciate so many smaller things. I have a sense of, I don’t know if it’s gratitude, I think that’s as a strong word, but just a sense of appreciation of things that I didn’t have before. And just because I’m ill and because my field of possibilities is so reduced, even my field of exposure, but just appreciating, I don’t know, just like very, very small, seemingly insignificant things, and that is an upside. It’s just like you do change your perspective. You do see things from another person’s point of view, especially… like if I do travel, I’m in a wheelchair. And, if we… my son is studying in Paris, and so we went to Paris to drop him off. And so I wanted to go around, go to museums and everything, but I can’t walk around. I can’t stand for a very long period of time. So, I rented a wheelchair. Well, that totally changes your perspective and how you look at people in wheelchairs. It really does. And so I think that’s good. That’s a good thing that has come out of my illness, like I understand a broader section of the population. You know what I mean? If you’re abled, which I don’t know if I like that term so much, but if you’re abled there are a lot of things that you don’t get, that you don’t think about because you’re abled, that you take for granted. But once you’re disabled, then you’re like, “Oh, okay. I see these things. I understand things.” And there’s a connection, another connection, you have with other people. Like even you and me sitting here talking, we’ve never met, but we have a connection just because we have chronic illnesses, and we can understand each other. And I think that’s an added value. There are good things.
Brianne: Yeah, there are. And something that I’ve been thinking about while you’ve been talking about it is even just things that I used to worry about that don’t take up any space in my head anymore. Like even just silly stuff like at the beginning here, you and I were just talking about I’ve been to a lot of weddings this summer and that’s all I did. I didn’t do anything else. But I’ve been able to do that and that’s great. But my husband and I, when we’re… like one of them was in New York city, so we were in New York, which is a great city of course, but it’s just so busy and people are waiting in line everywhere, and we’re just like, “I’m really glad that that’s not a part of our lives anymore.” Like we feel very relaxed and comfortable and we don’t stand around in lines very often, and that kind of feels great. And I know it’s such a small thing.
RAA: It’s a small thing. Yeah.
Brianne: But it’s like I don’t worry about getting into places with lines. That’s just not on my radar, and I’m kind of happy about that, to be honest. Like it’s working for me.
RAA: Well, yeah, definitely. It’s all those little things. When I was in the wheelchair and we were in a museum in Paris, and there’s this little girl who comes past me, and she’s in a wheelchair as well, and she was so excited to see me because I was also in a wheelchair, and she was waving and she was like, “Hi! How are you?” And just like we were automatic… she was like 10, but we were like automatic friends because we were both in wheelchairs.
Brianne: That’s so cute.
RAA: And it was really cute. And it was really like, “Okay, we have a connection.” Even if we’re in wheelchairs for different reasons, and even if I can still… I don’t think that she could get up and walk. I don’t think she could walk, but even if I can get up and walk, but I still need this mobility aid and there’s this connection there. And so, I think it’s good. And I’ve met a lot of people online that I actually consider friends just through having ME.
Brianne: Definitely.
RAA: So there is… I guess it’s not just looking at the bright side, but I think there are good things. It got me into mindfulness. I’m a mindfulness addict. I think it’s fantastic. I promote it everywhere. I’m becoming sort of like a mindfulness missionary. It’s like, “Hey, do you know what mindfulness is? Do you know what this is? You should come. You should come, we can talk about it. I have the books. I have the CDs.”
Brianne: Yeah. You’ve gone all in.
RAA: For me, mindfulness works for everybody. You don’t have to be ill. It works for everybody. That’s something that I wouldn’t have discovered, if I hadn’t been ill.
Brianne: You might not have slowed down that much kind of ever.
RAA: No, no, no. I wouldn’t have. I wouldn’t have. And overall, especially right now, my life is crappy. It really is. But I do say, “Okay, it could be worse. It’s crappy, but I still have this. I still have that.” And it’s very, very difficult to do when you feel physically like crap, and so mentally you feel like crap.
Brianne: Yeah. I don’t think we… we’ve been talking about some of the good things, but I don’t think we have to be focused on the good things all the time. I think it’s just as healthy to get mad and get frustrated and let those feelings out too, because they’re so valid and so understandable, but it’s kind of like the flip side. They’re both happening.
RAA: Well, I think we have to vent, and that’s something that mindfulness taught me. Thank you mindfulness. Is that you have to feel all of your emotions. You have to feel everything bad and good. And I think whatever is bad, you have to feel it, you have to vent, you have to get it out because it’ll just eat you up inside. I don’t feel like with my illness… in the beginning people were like, “Well, you need to fight this. You need to fight this.” And like, “No, I’m not fighting. I’m not fighting illness. I’m not, because the idea of fighting it is animosity, it’s negativity, it’s violence.” And so I’m like, “No, that’s not for me.”
Brianne: Yeah, that doesn’t feel good to you.
RAA: It doesn’t work for me. No, it doesn’t. It’s like acceptance… this is what it is. Like we were talking earlier, this is the new normal, this is what it is. And then we work from there. We’re still trying to get better. We’re still looking for different treatments and ways of improving our lives, yes, but it’s not like a fight because I find that just too difficult. It’s too difficult to have to fight.
Brianne: And, that’s an energy thing too, I think. Thinking about things that way takes energy. That doesn’t appeal to me. I know it works for some people, but it’s not for me either.
RAA: Does it work for some people? I don’t know.
Brianne: I think it keeps some people going. I don’t know what it means for it to work or not work. That’s a good question.
RAA: Well, yeah, I guess it is. Yeah. But I told you earlier about my friend who had cancer, and she had the same attitude. She was just like, “I’m not fighting this.” The way she put it was like, “I feel so much anger as it is about being ill, that if I add onto that, the animosity that the idea of fighting brings, I’ll just fall apart.” And I feel the same way. It’s like you feel anger. I still feel angry probably every day. At some point in the day, I feel angry that I’m ill, but it’s just like, “Okay, it’s there. That anger is there.” And I’ve been sick for, I don’t know how many, I can’t even count, I don’t know, seven years. I don’t know. But you still feel that anger there. It’s normal, but you just let it go. You just have to let it go.
Brianne: Yeah, and I think there’s also something about… I guess I’m sure it occurs to everybody differently, but there’s something about like, “I don’t want to be on the opposite side of a fight with my body.” I feel at odds with my body so much already. Probably every day I’ll feel that way or say something. But I guess probably some people think of it as they’re fighting against their illness, but to me, the way that that actually feels is that I’m fighting against my body, and I don’t want that kind of a relationship with my body. Even if it is a complicated relationship these days, I don’t know, I like to imagine that we’re on the same team, even if we’re not collaborating very well right now.
RAA: Right. No, exactly. Well, I view my illness as a separate being. I don’t know if you can understand that, but my illness, for me, it’s like a separate being. It’s part of me, but it’s almost like I have sort of a dual personality, so it’s like part of me, but it’s separate at the same time.
Brianne: It’s like coexisting in your space.
RAA: Yeah. And I always kind of, especially in the beginning, I always felt it’s like an invasion, like invasion of the body snatchers or something. It’s like invading me and invading my space, my body.
Brianne: And, like literally when it’s an infection.
RAA: Yeah. Right. But, it’s separate. It’s separate. I talk to myself a lot now, maybe it’s age. I don’t know if it’s age or I don’t know what it is. I talk to myself a lot. Well, I always pretend like I’m just talking to the dog, but I’m actually just talking to myself. But I actually talk to my disease. I’m just like, “Ugh. Could you just leave me alone today? Could you just give me a break today?” It’s like separate from me, even if it’s part of me.
Brianne: Yeah. Somebody that I follow on Twitter, I think, or somebody that shows up on my Twitter. It’s a person who has MS. I don’t talk to them very often, so if they listen, hello, I have recognized your screen name. But anyway, they have MS, and they named their MS, I think, Grover. And they just talk about MS in the third person as it is impacting their life.
RAA: Yeah, exactly. Yeah. I haven’t named mine. I should actually name mine. I don’t know what I would name it. I would give it some like really horrible old lady name, like old grumpy lady name. I shouldn’t say a name because I don’t want to offend anybody who has that name. Or like some horrible Greek God like Medusa or something.
Brianne: Yeah, like Medusa or maybe Hera. I think Hera was evil sometimes too. Yeah.
RAA: It’s something. But I really feel like it’s a separate thing, and I always felt like it was that being or whatever, especially when I went through periods of paralysis or feelings of… I just feel like that was coming into my body and just taking up… it was like a liquid, in liquid form, just going through my body creating pain and heaviness. And it was just like it was an actual physical being. And, I don’t know. I don’t know if it’s a way of dealing with it. I don’t know. But that’s just how I’ve always seen it, but I’ve never felt like fighting it. I have asked it to go away. Like, “Please go away for good. Could you just leave?” But I’ve never felt like fighting, no. That wasn’t for me. Not at all. So… look how long we’ve been on here. We’ve been on here for like two hours.
Brianne: I know we’ve been talking for a long time. So, is there anything that we haven’t talked about yet that you’ve been thinking about before we wrap up?
RAA: I don’t think so. Like I told you, I totally didn’t realize it was today. Luckily, I went on Twitter, and luckily I saw my email. That’s how out of it… I didn’t even realize that it’s the 10th of November. For me, Halloween was just like two minutes ago. So I don’t really have any thoughts in my head like specifically of things.
Brianne: That’s okay. I think most people don’t really prepare, but sometimes it’s like maybe you thought of something in the middle and managed to remember and saved it. But like you say, we’ve been talking a long time, so I think we’ve covered a lot, for sure.
RAA: Yeah, we’ve covered a lot. Yeah. Yeah.
[guitar riff]
Thank you for listening to episode 62 of No End In Sight!
You can find my guest on twitter @RAADakar 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.
Plus, don’t forget to check out the new No End In Sight collection on Medium where you’ll find stories and essays about life with chronic illness. You can find that at medium.com/no-end-in-sight.
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’ve got 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.