Episode 62 RAA Dakar


Umbrian benefits and this is no end in sight. A podcast about life with chronic illness as usual. Here's a quick plug for my Patriot campaign. Just in case you've been enjoying the show. Oh and you also happen to have a few bucks ASPERA each month. I've been using the Patriot. Money to subsidize the cost of transcribing the podcasts which is slow going but it's happening so if you're interested in able to contribute you can find that at Patriotair dot com slash. No end in sight. This week I'm talking to are a car about about emmy and FIBRO and the isolation of chronic illness as all morning the person that 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. UH-HUH I like to start by asking how your health was as a kid. Oh as a kid. I was great I had no. ooh I'd nothing as a kid I never said I didn't even have like allergies Nothing I was like super great as a kid did nothing at all and now and so yeah so then what was then Mike which is what I know. You're getting too well. No and then and I had I really great health Super active very much ensue. Very Athletic Like my whole life really and then I guess it started already going down hill maybe when I moved back to the US and then Um So had you been like as a kid. Did you grow up in the states. Or did you just kind of grew up like all over the place in East Asia And then in the US and back and forth okay. And then I ran and I went to university in France in the only only I guess the only childhood thing I would say was like allergies like to dairy dairy allergy like lactose in. Yeah lactose intolerant but it only happens in the US. Like I can weird. I'm in Europe can eat. It's the crap they put in NYC. I can eat your her all day long in Europe weird aired like interesting. I believe you. It's just so it's that kind of thing though. Strange and interesting you know. Yeah because I think it's the crap that they put in. I think that's what it is. You know yeah yeah yeah more nats will will. Yeah can't be in. The state is the what they put in the cows with the with the milk. Yeah so I never had any. I never read any Issues and then I got pregnant in the US. And then I had Had A butts epidurals okay. That sounds difficult in. That's where my problems kind of started so boxed up zero And then they did what they call a blood patch. I don't know if you know what that show and how it I also discussed. Yeah okay. I'll overbearing here myself. So if for an epidural to be botched does that basically being it just didn't work. Don't know enough about okay. It did work but I had been in this and this is how it was explained to me. I don't know if this is the correct version but was told to me was was that I was in Labor for about twenty hours like didn't want it epidurals and finally I was just like okay to heck with this. GimMe the Goddamn Thing yeah and so then. Apparently it was too late now. I don't think that's just what I've been told sure and it. It didn't work but they can't opinion like they kept upping the dose which I guess he would call it. I just kept giving you more. Maybe I get that. We're kinda guessing but something like that. Yeah I mean honestly when you're giving birth like you're not really noticing so much right now your first priority yeah it really isn't instill we'll find baby was born fine healthy but then a whatever it is that they put into your spine. It was leaking in my spine. Came in so I couldn't sit up or stand. I had to stay laying down and they said okay. You have a choice either either you just let it leak out on its own. UK or what we call a blood patch. Okay and that's when the ink your own blood. God they so they extract your own blood in they injected directly into your spine. Okay so the like out of they took it out of my hand. Yeah they just injected into my spine and that didn't work and so they had to do a second one at that point. I got an infection in mice. Oh my goodness okay. Yeah and so this like ten ten day old right right right with a newborn. Yeah and hat being in I was in the US at the time. Of course you know you don't have a maternity leave. You know you gotta go right back to where I was GonNa say you still in the hospital at that time or had you gone home and you were and how I got home and I went back to the hospital. Aspen got a blood patch. Went home back to the hospital. Another blunt And then I went but I went home but then I had like a week thirty leaves. Yeah which was unpaid either way right. I kind of like I had to go back to work. I didn't really have until the yeah. You know what he pull. That late convalescent. Is that what you call it like. Yeah no time to get back in no time line crash into you know just get used to having a newborn. Yeah figure out her seeing and just like all that so it was just the stress. I suppose that cycle right back to work and so after that I couldn't I used to run and I couldn't run anymore because my back Liz. It's so much pain and so after that it was kind of okay like my health was okay and then I moved here to Senegal got I guess maybe three years after that and then Then I started I I was I was working out crazy. You know. I'm just like crazy worker outer you know and like six times a week Whatever in contrast to think of what happened it was I remember being tired a lot and I was having a lot a lot of insomnia and I remember being tired watch but I will just put it down to stress? At that point I was a single mother and I stress stress and And I think it was actually and then I had my second child and IT TURNS I. I was like no epidurals at all right there. I told my guy knows like no way agreed with me and it turned out that I that the cord was wrapped around the baby's neck. And so she wasn't moving in so we had to do an emergency c section 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 with the fever whatever. They test for malaria. That's like one of the first things they test for here. Tested for malaria in came up. Negative okay so The doctor had a great doctor. Absolutely fantastic doctor. And how does the healthcare system their work just in compared to say the United States. There's a whole other thing it it's a lot cheaper. Yeah sure sure. A doctor's appointment is like dollars like you can pay out of pocket and you don't you know it's like police feasible and but here it's really nice we have a system that's called. SOS doctors they can come to your house which is really AAC. Yeah and it's like sixty dollars. I mean it's really great. Yeah so if you're not you don't have to go to the I mean those aren't specialists. Those are just general animal doctors but really normal system there. Oh yeah totally. Yeah absolutely I mean it comes from the French system. The French started Here yeah It's a it's a francophone countries throwing out of this stone brands and so I don't know so tested negative for malaria got. Let's feel better than I was feeling worse tested for malaria again. Negative and this all this while I have like six weeks old baby. Yeah not anyway not easy under the best. What an Artie Artie? Split up from the fathers. That was really on my own and now kids. My son was like six or seven in. Gosh I'm trying to remember all this stuff. It's not hard. Yeah and so yes I just kept getting sick and that was getting better. Be Better for a couple days and I get sick again. Like with fever like malaria symptoms. Yeah so is that like have fever and sweating and Petillo and body aches stuff. Yeah Yeah Larry is like first thing. Yeah and so finally one day and luckily at that time my mother was living here. Senegal and So she was over at the House and I was is not as I was not feeling well. This has been going on for about a month. I guess I wasn't feeling well and the baby. He was crying and she brought her into nurse and I was like no. I can't because my head my head was like about burst and so she got worried because she was like. There's no way that she's accepting to nurse. The baby will yeah. That was was only out of character for you for big data character. Yeah Yeah and so. She called a friend who called a friend who knew a doctor who had clinic and they rushed me over to the clinic and it turned out. I had cerebral malaria. And basically the doctor. After said if you hadn't come in right this very minute you would have gone into a coma and died. Holy cow it was pretty major Ah Continually tested negative for malaria. Right I had just went to my pain so yes it was really. It was really horrible time. It was just emotionally and I didn't want them bringing the baby to the hospital because hospitals are full of diseases. You know flying in the air viruses in whatever. Yeah lots of six eighty. Yeah so I didn't. She was a newborn was only a few months old also 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 that what it's called any looks like a spinal tap in which is really really painful and it was just the whole thing which is awful and then like okay? You're better go home and I go home in like three days later I get sick again. I go back into the well. I hadn't been injustice cow even happen. Yeah so I mean I laugh Athabasca now because it's just like it's absurd just like what the heck lleida break up with. My husband went while it run Mike seven months pregnant. You know I come home. I was like all these other issues being nine months pregnant alone right. You know with two with my kid already in in the also in the meantime like I changed jobs. No no I was at this job. I had different position which was like more responsibility in so just had dead. Why I don't know like if a law against the last time the baby was turned around and she was like breach in? I couldn't get maternity. Leave is I was working in an American school year so they only like like oak sort of stupid they leave in the. US The absurdity. Take all yeah and so in my Guy News. Seems like you have to take off work. What is it with these Americans? I don't I can't take off work. Yeah and so what happened. In so it was just like he's the accumulation of just pure unadulterated help you know. You have a full altogether right and so in my job We only had a certain number of sick days that we take and I had taken all of mine. Mommy's leaks in the hospital right and the doctor was like I re- month rest. Yeah because he likes the stress of the divorce the the key section right. Yeah cerebral malaria meningitis. All in the space of four months. Yeah it's like three months said rest. I don't do any of my boss. You can take three months but you're not getting paid. Yeah great so I had to go back to work because I was married twice a two kids with each marriage. I'm sorry one kid one canary. Yeah Yeah Yeah sorry. I don't have four kids. Neither one of them contributes financially. So like gotta work when you you. Yeah Yeah Yeah and just before you get to that what. We're the treatments themselves like so the treatment for malaria and then the Freeman manage. Ida's because obviously like letting your body recover is its own thing. But they're still like a medical intervention that has to happen first right. Yeah of course. Yeah yes anything. I couldn't even. I wasn't even over the treatment for the malaria. Before I had to go into the treatment for meningitis Brian. My body was was constantly. I mean they couldn't even find any veins on constantly eat right. Couldn't find find any anymore they had to use like debate Needles used for babies. Yeah you know they just couldn't I had I came out of. They're like looking like a drug addict. Basically like good like I've been shooting up because I just had All over my hands caressed yet where they had Injected me you know. Yeah Yeah Yeah and then as I. I didn't even have the chance to my body. Just didn't have a chance to rest all right. See Section on top of that or before that. Yeah Yeah Yeah on top of that. Yeah and and then coming home and then having a baby who wasn't even six months old you know yeah and going right into nursing a fulltime and having you know the seven year old yeah each myself and so it was. It was pretty rough. It was a lot of stress. I mean now I look back it whatever you know. It's just Kinda like well. What you live sir you deal with it? That's how I look at things people we're like how do you do it happened. Like I don't know I just do you. Just you just go on. You know. There's no point complaining because this is it You know it was I. I don't know I just kept going and going and I started up the working out again and everything in my life was pretty okay and then I think that I was. I remember sure I started being really tired. that's like the first thing I started just being really really tired. Yeah and for no oh real reason you know it was kind of like I started writing down on my to do list. I started writing down sleep on my not. Do this man to rescue need it but it and I remember like everybody around me was like Oh. You're so tired all the time mm-hmm yeah and But I was still super active. Still just like go go go go go all the time You know I was doing this activity in that comedian. This whatever and you know and I think it was probably in will in twenty when he twenty ten I think I remember I did a used to be really big swimmer swimmer. Zimmer addicted to swimming and I did a five K.. Like Ocean swim lots of out in the the ocean like any a Ann. 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 because the older you know I did the last four years ago so and I now looking back I realize no I was already Dick then right you know that we did to them but you didn't know it then I didn't know it then. I realized it was just be a long time to recover like it. Just the muscle. Soreness you know and I mean I've done marathons ice run. Five K's ten K's relative to New York was just. I'm really used to doing those sorts of activities right recovery. Looked like like you expect worn out afterwards but you don't expect to be like dragging ragging at dragging for days or even weeks sometimes. No actually the the thing is oftentimes after it was like a those types of events for me like a drug like I did a marathon in twenty two thousand two. I guess and I didn't need any recovery time just like Greg Nothing. Yeah Yeah felt great. You know after I did the first ocean. Viking Ocean swim on no big deal right back to swimming right back to kickboxing and all the other stuff I was but this time it was a long time and I didn't even get back into the water like months afterwards. And and what did that feel like like. What did the Recovery Time. What was happening or was it just like more tired more heavy? You know like you said you didn't notice I noticed right away really really store And started really painful and I was just this is my body just felt really heavy. You know I did all the normal things and I was wondering who's like I'm eating normally but it was like a one of those things use like. Okay whatever just line or you know try harder. That was always in. You know for me that was always my mantra is like keep pushing keep going you know. I was always the one who was like pushing everybody to work out. Push everybody to do more and I was always you one. WHO's like okay? Everybody Sunday my house aerobic. Let's go back. Let's go yeah I was the one got like a group of friends together to do this. Ocean swam a Mike. All right ladies. Let's go train. I had the training. I mean that was me right right you know like most intense exercise are in the group for sure yeah totally I got my son kickboxing when he was like like seven. You know just all in just absolutely ratings. Yeah and so I think for me. That's when it it kind of hit me I. I wasn't able to. I think it started. I guess maybe twenty twelve. When I'm really really started to notice that I could did not work out like I usually did? Yeah and that's in twenty twelve. Probably when the pain started. It was just I used to wear. We're a weighted gloves for thing and I couldn't do it anymore and what not. Yeah how did the Mark Cutts Weird. I don't know it just it just started. You know it's just started. I just noticed like a bump into the door frame yeah. I've always been a bit clumsy lake despite being like Bump into things bump into the door frame it was like Oh that hurts. Does it hurt mortar talent. Your skin almost most like light touch wood. Yeah any touch her a lot in so An images like if I was sitting down in hard chair you know like a what do you call those cast iron chairs. I think it's called. You know. Look outside outside the just hurt like patio chairs and stuff like that. Yeah Yeah that that hurting and I was I just I just started to get really really tired and so I thought I maybe knows his family. beatty's silent issues. Got Those tested right away. I thought well maybe it's something to do with that and I'll also I started gaining weight And I'm like Oh can I be gaining being wait. I'm still working out like crazy. You know my diet hasn't changed. I was like yes. Something's on I knew news. Something was happening and of course everything comes normal. We'll all the blood were everything comes normal except for like my magnesium was low. Oh something so i. I don't know if I started taking magnesium right away. I don't remember but talked to a friend of mine was a pharmacist. Like I know this doctor who's really good. Go see him and so I I think I went to see him. No I'm sorry before that happened. was having all these symptoms and I was like East like a knew. Something was wrong Besides limp beyond just stress and beyond all that right ends one day I think it was like June third in the morning in the morning. I couldn't get up. I couldn't move. I couldn't lift my leg. I couldn't lift my Arm could lift my head and just like and that was I know. That's impossible to describe. But how does that feel. It's like a heaviness in like you're like being real sick Kinda right like your muscles aren't responding. Almost my my reaction was. I'm paralyzed now. That was my first prescription. That was my right. The first thing went S- my brain was like paralyzed. Yeah because it was like I had I was sending me signals from and my brains to my body and my body wasn't reacting and I would I remember like in my brain like okay arm move. Yeah an arm when crashed scary too because of thought dramatic. It's well it's really frightening. It's frightening being in now. I look back I see. I see the Work up to it you know even it just hit that AH are yeah Still dramatic change even if you were like tired and kind of achey before this is still a really big difference out of course. Yeah Yeah Yeah and I and I couldn't move and I called in the morning. I'm usually the first one up and I it called and called and called my son who was probably I guess he was like twelve thirteen at the time. So is big enough you know and called Minsk assume and I'm like lift my arm for me. Yeah and he lifted my arm but I couldn't really feel him lifting my arm and I'm I'm like lift a leg for me. Lifted my leg. But I couldn't help him Brian. He told me like deadweight. Yeah yeah so it got me got me moving like in a happens again like in the beginning of my illness I happen quite often that I would just be stuck sued. Wake up high distracted. Yeah I'm stuck. I wouldn't necessarily wake up like back Number so it might happen at other to. It would just happen at other times in Seattle like if I would lay down because I was pushed myself too hard and so because I I was in the beginning. I wasn't pacing. Yes as I was learning about pacing. I was learning all this stuff right. Well it's it's like the opposite of what we're told we know like and especially when you're really active and your doctors are telling you that being active is the answer. It's of course. Yeah no yeah exactly and so I mean I still had to like I said I still had to go to work on my mother. Yeah Kids Yeah. It'll hit a pay the rent row. Who's get a table? There's not a lot I was. Yeah there's I didn't really have choices in Zell and I still have that mentality talapity. No just go go go. Yeah and At that point. Did you go back to a doctor like that morning morning when you felt paralyzed so I didn't see a doctor right then. Okay so you're still trying to adopt pushing through and don't really know if there's some what what it might be that's going on. Yeah and I was looking for a doctor. And that's when I spoke to my friend WHO's a pharmacist. In I know this doctor really good I went to the doctor and he diagnosed me. Well first of all he did like that knee jerk tests. You know that that need your test. Is that what it's called like for your reflections yet for reflexes and My my knee jerk like my knee didn't move. Yeah that happened to me me when I was in the mold house actually so yeah really. Yeah it's weird. I know it's supposed to happen. It didn't yeah. And he was actually kinda frightened he was like. I've never seen that before. He was like you're in a really bad state. Yeah you know. He's it is he. He was old he was like really really old. He was like seventy five yes. I shouldn't say that should I not very PC. But I'm just saying the same that because he's had a lot of experience you know. Yeah Yeah. He's knocking sticking around for fifty years and in he was never seen a need a dozen. Yeah here's like no we. Yeah it's so weird was really I was really we really like rock bottom and so I guess it was like that was Jus I did have some vacation. I don't know if I mentioned a teacher. By the way I okay breath that came up and yeah you said your school but yeah yeah ask speaker and I'm lucky with summer vacation in so I had some time to do you think on what he said. Oh sorry he diagnosed me with this. He said I'm not sure. He say in English destroy. I just don't stony thing which is like a movement disorder. It's like painful and could be. So that's when he diagnosed Eh yeah and so he put me on antidepressants. Okay and Because he was like well. Are you depressed. And I'm like well. Yeah yeah but not necessarily the because of right look. I'm not sure that came at that time. I didn't have the knowledge that I have now like now. If a doctor tells me I can explain myself I can explain. Well the difference between Emmy and depression. Yeah you know automatically. I have the word for that but at the time because I have suffered from depression in the past right you know I. I knew this wasn't depression but I didn't have the words to say and so I said okay. I'll take the anti-depressants even I'd never taken them before. Despite having about Russian yeah and Dec- yeah and and also obviously didn't work. Yeah 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 is like sometimes I think because there isn't really early a good understanding of like why antidepressants are effective in certain people or whatever it like antidepressants are used to treat so many different symptoms really elite like Earth and. I think doctors do a bad job of explaining that to people and navigating that like I think it I think for most most of us different if the doctor was like listen. I don't really know what's going on. I know that sometimes antidepressants 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 depressions causing it. Let's treat the depression and then it feels like exactly what you're saying like well. I know I'm I'm not. I know that what I'm feeling isn't how depression feels so That's not helpful. Like he just weird thing i. I don't know I'm really frustrated. Did Right now by the way that that happens so much. So I've been thinking about. It does happen. Yeah that's happened a lot. That's why it's so important for us as Haitians. I don't know if that's the right term. But as as sufferers to be well read and to know you know it is out there and I saw another doctor this I mean. I'm jumping ahead in time but I saw another doctor who knows fibro Because I mean I'll go through my other diagnosing minute but in I talked to him about symbolic data. I guess it's I think it's called yet in Zimbabwe known to work for certain people who have fibro and he was going to. He told me I was like he was going to suggest that as a treatment and But I already knew what it did and how it can work and the good and the bad bad of a new that and luckily I did. Because he didn't spell it out right now for him. It was just like ignace. You'll you'll you'll be better. Yeah take this what happens. Yeah and yeah. It's like in the first part of your story just that you don't even you didn't know Oh like how to talk about it or what questions to ask. And that's what's so hard like you get further into being sick and you start to learn about it like kind of like you're describing right now but it's so frustrating starting to think back and realize man that Dr wasn't helping me the way that I needed to be helped. No because I think that they just don't know. Yeah it's it's like you said you don't know and so so after I think after that of first doctor I started doing a a lot of research and I came up on Yahoo. There was an article in it was a picture of a woman and I was like. Oh I like her hair. Yes cupid and I read the headline and it was like something about an illness but it up in so I read it turned out. It was jen brea. Actually okay. Yeah and it was an article about her And you know she had any and all this stuff and I'm so I'm like okay. Let me research us in. So they have Like a good checklist. So went through the checklist. Because you know there's no diagnostic test. Yeah and I do checklists and I called the doctor who's also a friends who in he's the one who helped me through the whole cerebral malaria. Okay meningitis you know. And I contacted him and I was like look. This is what I found and can we do this test together. Like the a checklist here. Because I don't want to do it with him right. You're like. I'm not coming up with a diagnosis. I'm asking you to look at the criteria Syria with me. Yeah that's what it is the criteria and so we went through it and then it suggests to all these other tested. Make sure it's not M. S.. It's not it's not bad. It's not this is not that. Yeah and so. We did that whole thing. That's how we came to my diagnosis of emme. Basically go but that it's like no. Yeah he's really open. He's really good and he was fantastic and so But I mean there's I mean he never heard of it before right. Had you heard of chronic fatigue syndrome do you know oh just as well eat heard of PF s that he had the ideal CFS like many people. People have all your desired right right. It's not like a bigger systemic problem. Right it's not like a really big deal. Yeah you you know. Yeah and you'll get over is you're just tired you know Yes vacation you know whatever they all say yes and but he was very open and so we did all these tests and everything and so but at that point I was pretty much pretty much housebound like I said I went to work Came home like crawling I had to. I moved house in the meantime so I could be close to my job So I can actually and solid cone but I would actually have neighbors who like helped me walk to my door and I would just fall into bed you know. Yeah yes I know exactly. Yeah and so I did. I did get a lot better. I mean obviously way better than I was Then but then My partner at the time had a friend WHO's a doctor in he was like so oh he would come in he got me to do other tests also Just to rule out other stuff. I got that that brain thing neurologist. May they do that. He keeps rain thing where they put those things in your on your hand stuck to. Your head is called on that what it's called I I actually don't know what it's called but like with sensors right like lots of yeah did that and that was horrible. They have a lot of hair. It was just gross and net. I went to do and when they did the whole test with the the needles Beatles. You know they just went through a whole bunch of other tests Yohannan nerve conduction on stuff. Yeah I went to Cardiologists and he diagnosed with the pots. Like the the tilt table without table but the thing is just like lie down. Yeah lie down setup standup Yep and and then the neurologist. You know she checked five. The pain point yet. You know in fibro yet and I had the required number whatever in so she was like you know you have fiber over at the same time She said well in that time I was using a akin and but she still said well. You know maybe what if you try to not use your pain. Yeah just push battle. Yeah I mean in. It's it's so funny because on one side they listen listen to you and they stand. I don't even know understands the right term but they understand you then they're just like well we'll get rid of your Kane is. Hey just go work out the canes the problem. Yeah the problem problem. Yeah Yeah so anyway we. She was An inverse theory was that everything everything that I had been through with my spine. You know step into role in the cerebral malaria and meningitis. Says says the not having any time you know when she said really not having that convalescent she said that was this really detrimental. Yeah yeah is it not time to recuperate. Yeah you know and then just working in the you know added onto being single mother right. Yeah like there's no time to rest in in that kind of a schedule anyway. When you have kids and a full tab and everything like that I know and and the father's not being around like not even around? It's like a immoral support. Even right you know all and be like a this is what's going on. Can you talk to yeah. You know you're NC not and whatever and deal with that for me. No none of that right so I mean I don't complain about it was you know. Yeah Yeah I mean the honest about how hard something is i. Don't think is the same as complaining you know. I think we can do that. Yeah I never I never did complain. You Know Oh and so when when about but was really hard is when I got said that was really that was difficult. That was It it still is. I mean it still is if a boat but just giving up Who I was? Yeah plus I got sick when I was forty one I guess yeah and so I don't know I've always wondered wondered was it. Is it harder when you're older when you're younger. I don't know if there's a there's a definite answer it's an impossible question I think. Yeah I mean in and it just it depends on the person I mean it depends on your perspective. I spilt but Because I was older so yes so I had my kids live. Lived a life you you know well younger people will think not GonNa have kids or you know it's just it's just different perspectives. But I find that like getting sick when I'm it was forty one. It was so oh difficult because I had this whole this whole person already. Yeah I was a full blown adult. Yeah you know I might analogy. was there my character. was there Who I I knew who I was? Yeah and then I write in and I remember I was on on this. Despite the he'll click and I remember talking about it on there and there's this one woman I will always remember her and she told me she. He gave me the greatest advice and she said you just have to. You have to bury that person. Yeah you have to the person you were very that person and you have to just leave. That she's like it's a corpse is basically yeah. That person doesn't anymore and you have to say this is who I am now and this is going to be from. I'm now on and I think that it's difficult. It's not it's not by any means easy but it's that really really helped. Let me say okay you know what I just have to let that person go is. This is the new knee. That's it and I have a new normal. I always called it. My new normal yeah and now has just become normal. Yeah Yeah Yeah I think that it resonates but there's so much grief and I think like it can be really. Yeah and it can be really easy to get stuck there which I feel like it's Kinda what you've been saying about the letting go it's like it can be really really easy to go. Well maybe I can just do like a different version like instead of swimming five kilometers in the ocean which is very far. You know I can do a smaller version and find a way to still like get that feeling and yeah and it can be easy to kind of get trapped like chasing those things. which doesn't I mean I can never find any new things of course but like it's hard it's I'm just I'm just agreeing with you? I guess no it it it. It really is hard in nine thinking away. It is why I don't WanNa say it's harder because I don't like to compare but I find it being older. It was seemed like it's harder because you have so much to let go of you know so much of your let go of in so many people around you who've known right one inversion you. Yeah and they don't know how to deal with the new you. Yeah you know yeah and I mean I really basically lost all my friends yeah all were friends quote unquote friends told the drop me. Yeah completely dropped me. I'm so there was also back is solution. I mean And I know a lot of people live with ice elation all the time and I've read about it you know people post about it and it really isn't issue dad's Adlan isolation that you feel. Gosh you know I mean 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 years it was. He was really really supportive. Yeah Yeah and he was really trying to find solutions for me and he was very understanding and that really he was really the only only person who's so and so and I have other friends who live far away and though they knew I was sick but they didn't really understand because they live far wasting steamy. Yeah and it's if you don't know someone who's been through something like this. It is really hard to imagine it if you don't on CNN. Because we don like I say this all the time because it's true like we just don't have meteoroid presentation so there's no like oh like that character in that movie like it's not a thing people have no idea. Yeah people have no idea and they have no. I mean it's not something as as well known You know like if you walkup when you say oh I have cancer. He will automatically can identify. Yeah like not identify personally but they know what it is and they know what it entails tales. Right you know yeah. Even some of their ideas are wrong to like general picture. Yeah Yeah Yeah. And so they And what I found is that Unfortunately I had One friend here was still friends with and I also worked with her and She got cancer is she was one of the friends who had kind of more or less left me in the whatever you know uh-huh and She got cancer and so I was around. You know go see her. We'll talk talk about it and I mean she had a really horrible horrible cancer and she actually apologized to me. Yeah and she said. I didn't realize what you're going through. Yeah she's like now now that I'm sick I'm like I can't imagine what you were going through and we all let you down. Yeah you know and it it would it took or somebody to you know it's like they have to even though it's not the same the illness it's still no hearst. Her life still completely changed. You know yeah exposure. Yeah yeah this other other way of living again yeah. It's not the same but it still a drastic change all your relationship Your Ability Nicole. You're you're ges. Yeah you know you're yourself questions all the time. What do I do and she was also a single mother? You know so she was like okay. What do I do I kids? What kind of parents might get beads? My kids You know that you have all those questions. Yeah Yeah what I don't know it's so hard to like okay. How am I did a date? How am I get a right? How am I gonNA parent? How am I going to travel? You know every thing revolves around that illness unfortunately yeah so many things into consideration. Yeah plan so carefully just to like keep going. Yeah Do you really do you know. And the thing I had another friend. Actually who got ill. Nothing Super Major Major. But she was really really sick I think she got really by a case of the flu or something and she was down for like two weeks Chiku afterwards and she was just like God like how do it she was like I went through. Hell I thought I was GONNA die. Is She was like. You're telling telling me that this is how you live every single day of your life. Yes like how do you do you. Just do yeah she was like I would've I would've killed myself. There's no way I would have done that. That's not helpful. No Yeah I mean whether helpful but it it was just like it was just her. No I know it was like you know process again and realizing what she hadn't seen before yeah exactly absolutely and so it takes somebody being. Yeah that's it. She was saying I couldn't move out of bed. Eat anything you know. It was like well there you. Oh how was that. She was like. Is this really what lifted. She's like that's like this. She was eighty. Whatever I'm like? She's like I always say like sort of describe how I feel in terms of people can understand. I say okay like every morning I wake up up like I'm hungover even I haven't had anything to drink. Palo her with the worst flu I've ever had. Yeah yeah that's kind of it. You know. Yeah that's right. I mean he's hungover he can't move if you're eighty you know your throat heard now is just like you know every single overlay. Yeah Dingo Day and it just goes like you know and actually yeah I wanted to. I wanted to tell you also when I I read the name of your podcast. No end in sight. Yup I I really connected with that. Yeah that's it no end in sight you know. Yeah Yeah I really feel. That's how would you like after you grieve. We've maybe you're like. Oh no this. Is it now. This is my new normal. That's like you said. Yeah but there's because there's no end in sight there is. There isn't something that I think. All of us with wooden whenever you're chronic illness is I mean it doesn't have to be Emmy doesn't have to be I roll your chronic illness is I mean it could just it could be diabetes. Whatever it it like there is no end in sight? This this is something they have to deal with for the rest of your life no and taking to have in your brain yes Yes in it in it and also the impact on the people you live with You know whether it be partner has been what what you know. Yeah I see the affected. Has You know my children. Yeah I actually I really want want to write a piece on that. I think I mentioned to you before I wanted to start writing to be said about parenting. Yeah with with me. I mean it doesn't have to be any chronic. Illness let a see the effect it has on my children. Yeah Yeah and it's it's hard. It's hard on them. 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 right like because for you. It happened at almost at the same time that you were becoming apparent. I know I know you got much sicker earlier when you're second is born but it's like I've talked to people who became sick at sort of different phases in their parenthood. So some people Komo 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 or you know and kind of everywhere in between gene and it does it really it. It shapes that experience and I think that's important to talk about even though I personally am not the one to talk about but like yes right about that you know people it matters. Yeah and I think people are like well. There's so much there's a lot of guilt of God. That's the first thing the first word that comes to mind is funny. You should say that because the first thing that goes on is guilt. Yeah yeah you know and see like my son. He remembers me when I was well when I was super active. Yeah and because I didn't get sick until he was like like twelve thirteen Really visible right now. housebound ill whatever but with my daughter. She's you know she's seven years younger than him. Yeah so she does remember me when I was well. Yeah and so will pull up photos of me from before and Dan. That's you Y- at another person. And now she's getting to be a preteen now And so she's getting close and this and that you know voice start telling her her 'cause I always used to wear eagles She was used to wear high heels. Might yeah ask your brother because your brother because he he remembers it always wore high heels and I never wear them anymore. Yeah I can't imagine wearing them now for like I can't imagine them regularly. I warned them every single day like I was written in Paris in the metro wearing high. The ORANGEVILLE Yeah I'll go to work wearing my heels. I mean it was just even here. I don't I don't I hope you can imagine like what the landscape is like here Senegal but like my street is is just sand. Yeah literally stand end. We don't have a lot of Asphalt roads and so even that the sand just walking on my tippy Taylor's workout on its own and I I'm I'm I'm still do like if I go out I still wear heels to go out L. but I flat to go and get to the place I put on my heels snap because I know they ceded most of the night. But it's like just pure vanity Eh. Yeah which is fine. I think we can keep that stuff. I'm pro vanity like give up so much. I mean. I'm in my pajamas. I've been pajamas. Most of the time now like get into it. When you're able to you know it's nice to feel like yeah? It's nice to feel like I mean it's I don't think it's the same as like trying really hard to keep your old self but it's just nice to feel I don't know whatever we associate with like normal or healthy or whatever like I have make up on my hair. I'm here yeah I totally deal. Yeah I have like okay where I live. We have Taylor's like if people who can make our clothes so I've like designed all these dresses that are comfortable optimal and are pretty you know like with these fabrics designs and everything in so I have my my clothes made so so I feel like Jake I look good you know and also to have these dresses made. You can't really see my legs. If I'm like Zombie Walk Day. I walked like Zombie but at least I have some semblance semblance of normality. I guess it is. I don't know yeah. Yeah even m walking cane at least you know yeah I can sort of like feeling like that part of your you got to keep that part of the yourself. Yeah Yeah Oh I don't I don't know I think it's like I do. I am able actually do go out because I used to dance. As well like part of physical activity I dance salsa and stuff so I'm still able to go out and dance once in a while. Yeah which really really thankful for. Yeah I mean I can do one dance and I have to sit down. I had to sit out like ten and then I go dancing days. I sit out another ten dances but I can still do that and so I can still wear jeans and acute top and I I will put my heels on but I can't dance them. Idea but unknown is like barefoot dancer. But you know it's nice to be able to really really thankful to be able to because I know there's so so many people who can't net at all yet But if I just do it once a month sex might my personal goals like okay gathered a house. Even if you Dan just go out of the house go put some makeup on you know. Get some cute on and go. Yeah because it's your personal Ol- if your mental health is well. Yeah definitely I definitely think that like you some you. Can't sometimes it depends. Sometimes you just can't take care care of them both at the same time like yeah nuts no you can't I mean I actually I guess this does speak to my vanity. But I'm also I'm getting older but I had eyeliner tattooed on crazy right. But so because I do it every day I can't put make up on every day and I can't usually at at night when I come home too tired to take it off. Yeah like okay if I have it tattooed on at least it's there. It's like it's handled. You don't have to think about it. I don't have to think about it right just throw lip gloss on and I can be presentable but see the problem with that. Is that the people. oftentimes don't realize is how sick right like a catch twenty two right because when you do go out of the house you WanNa seem. I don't I don't want to use the term normal. I know that's not really you know. Yeah but you being ooh I don't it's like you don't want to stand out like you don't WanNa be obviously identifiable as like a sick person. Whatever that means whatever whatever that means it's like it doesn't have no I don't WanNa be Mike thing is too is? I don't want to be pitied. Isn't I think it's a fine line that that we we walk when we're chronically ill because we want people to understand but we don't want to be pitied. Yeah yeah so I find it. It's like I want people to understand. Try to build awareness around me like at my job You know But I don't want people to pity me like Oh poor saying oh you know whatever I really hate the I know the person needs well. Yeah I don't get upset about it but I I don't I just want them to understand. You know so that that sort of a fine line. Yeah Yeah 'cause they also think it's interesting testing like when it comes to stuff like mobility AIDS and disability of like I. I don't think like I don't mean blending in as in like nobody can. We know that you are disabled or have anything going on but like sometimes it's just nice to look awake even like maybe I'm using the military aid but I look like a person who knows what's going on around me and I don't think like that you know it's like there's this kind of subtle things. Yeah US I mean where where I live. It's that In this society I live in there. You don't see a disabled. The people You don't 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 you know mentally challenged people you don't see them at all and that's the that's a cultural thing. Yeah so if I'm walking around with my cane people are kind of like the price. Yeah you know. And they're looking at me like what is wrong with her. Not In a bad headway but it's just unfamiliar. Yeah it is really. Yeah because out of people unfortunately here here who have disabilities are beggars in the street right. You know it's like a large them into added like support networks and stuff. Yeah it really. It doesn't it doesn't really exist and people if the children children who are born with disabilities are hidden. oftentimes they're hidden in so people. A A person in a wheelchair is oftentimes a beggar. I mean I've lived here now for sixteen years and I think I've seen one person in a wheelchair there is actually working in a company Once yeah yeah it's just not it's just not ought not done you know something that So that's I mean that's just that's just a cultural thing you know. It's a developing developing country. So the mentality is. Hopefully it's developing you know like towards acceptance. Yeah I know yeah inclusion. Yeah thirty took fair. Yeah there's a lot of work to do a lot of work to do here on a lot of levels you know And so I've been thinking. I mean talking about awareness I had one doctor who wanted me. He to create An association here FIBRO because most doctors here no are familiar with fibro. ABRO and even in the Francophone World in general emmys just doesn't exist like nobody really talks about it. in but they're familiar with FIBROMYALGIA so in fear doctors are to a certain extent. So this doctor was like yes because you know you you you've done so well for yourself you know basically on your own. Yeah And I have become To a certain extent like a reference person Mike. I've had like Johnny Call Me. I have this patient here. She's presenting with these symptoms. Can I give him her number. Can you talk to her And have been put into contact with other Patients and whatnot. So it's Dr WanNa meet you. Create this association like just to build awareness me like a support group right because exist there are people here with the right of course definitely with fire. Will maybe with EMI but that you know not diagnosed it sounds like probably now. It's now it's not known at all. It's really not known as like you mentioned. They're just like yeah whenever you know. So that's ax something. I've been contemplating a couple years. But it's just the paperwork is so difficult Are The getting there from here. Ear thing it's also I'm dealing with very patriarchal society so Even even dealing if I had to deal with doctors here like building awareness with doctors They mostly be men and Tom I mean that's like a whole nother conversation right. There's there's A I don't know a certain attitude to towards women you know and I don't know with very accepting of a woman not any lease coming in and telling them right trying to educate the man medically kind of it would. Yeah Yeah. Yeah and that sounds like it's the kind of thing where there's so much the work involved not just the paperwork like you say. But that's a ton of Labor Labor to keep having these conversations and keep working with people and getting run down by how hard it is and then going back like. It's yeah you're going to have being a pretty big undertaking. Yeah it would be but I still would like to yes to have a support group for people like for for patients. Yeah At least half that yeah in either. I don't know how the the whole with the doctors could work but I really. I think it needs to be done. Yeah it really does but just a just the idea Going and talking to those male doctors. That's yeah authorized. You WanNa do. It sounds like but the connecting with patients. Yeah Yeah Yeah exactly exactly so I mean it's it's a it's a it's a very common. It's kind of complex. I hear you know in so so it's Like foreigners are seen as being so different. And so if you're not the Senegalese than your different yeah and so the so even though I am a person in a color here not it's you know it's like it's like weird you know just culturally early a different space so the way that I don't even have good words but I feel like I got what you're saying. Yeah no I think so. Yeah yeah initiatives like the the religion plays a big role in Culture plays a big role in. So I'm just like oh I don't. I don't know if I WANNA do that. Maybe just your work with patients but right now I just don't have I don't really have the time and I don't really have the energy. Yeah big thing right. Isn't it though I mean and I realized also like in the last maybe ten months. I guess I've been in complete denial. But I realize this like last week. My health is on down. I'M GONNA decline right now. Yeah do you feel like stable. In between I've been yeah I've been for years at Bryn pretty stable. I you know I'm not resting. Yeah but I've been in I had a pretty good routine. Had a pretty good pretty predictable with this. Illness is so unpredictable. And it's been relatively predictable. Relatively I could you know do a manageable. Yeah it was pretty manageable my activity level Went Up Yeah I could I could. I was managing pretty well. I had some dips down. You know but I would come back up. Yeah but now I've been on this downward yeah I know and and and I guess I was in denial. No I think they're so hard to see I. 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 you know months can go by and then you stop and just say like wait a minute. Six months ago I was for me. It'll be like six months ago. I was actually using my computer for a couple of hours every every day and now I only use it every three days like something is happening. Yeah Yeah and I think you're just used to like coming out of that. Yeah Oh yeah. That's normal for a week but then two weeks ago by three weeks go by yeah and then six months yeah exactly exactly inside had dipped than blasted you know three weeks or whatever put it all come back but this is been I mean I guess Ooh four I guess school out like in June and I thought Oh God thank God you know summer vacation nation. I'm just going to regroup because I've been crappy crappy time like six months. I'm like it's okay. You know I'm going to regroup getting it back. Whatever it it'd be good and then I crashed in July I was like basically Yeah Yeah and was a much better and I went back to school in September in. I mean I was like Ryan every morning the average Maureen so aired and and then I I just realized I was just like I think it's one of those. I'm an downcycle right now. Yeah no things are actually harder right now. Yeah and I'm like okay I have to readjust I'm going to have to. I don't know re whatever ever in order to find some kind of equilibrium. Yeah kind of. I've never had perfect balance. You know I've always kind of felt like I'm just fobbing like top of the lake. My head is just above water. You know always kind of way but at least will my head was above water. You know. Yeah that's my equilibrium will back him right but now excited I basically underwater hosted the time coming up for air like every other day but You know so I don't know I have to. I have to figure that out but it is so hard because it's just like I have to work and I just WanNa take off work like Oh. I wonder finding get two months off work. Yeah you know yeah wonderful. I don't know I don't know just keep going. You know gap keep going and see I now will I mean it is what it is you know so I just figured out. I just don't know when I'm going to actually have time to figure out what that will look like yet yet. Will I'm like what do I. What do I do? You know 'cause I had what I did before Mhm Am I don't want to do. Yeah and had you liked you do more of that. Yeah because before so I think it sounds like pacing meter really the difference for you and you had tried a couple. Were there any medications. That did help before. Even if they don't seem to be held now well mostly my what I he will I take I take them at all every day. Fifty grams every day and I take magnesium Ziam which is super important for my pain and it does lessen my pain like like as far as I mean if I don't take magnesium like you can't yeah not touch me mystery meeting yeah So the macneice does help with that for Anything else I take. I take Multivitamin I take probiotics. I take Omega three like high dosages of Omega Three MHM What else in that? I take for energy. I take a n I think it's called. Co Yet. I think co Q.. Ten beyond who knows is that I don't know how but that's basically my daily you know. Yeah in that in that found out just the research on my own yeah and trial and error and trial area. I would try something I was in the beginning I was really I really tracked rethinking the beginning. Yeah you know I do my symptoms feeling like every Marie part of the day like four parts of the day like morning noon afternoon nights with what I was taking the time of day was taking it and the results very religious decorate religiously and it really helps every helped me a lot because you're out what worked what didn't Yep But Salau it's a lot of work it is and there are things I'd like to take like. I wanted to injections of of a beat. Well that won't help me that. I can't find it funny. Who will be the injections and I tried to do it myself? I can't do it. Aw Tell me frustrated yeah let hurts. Yeah somebody else doesn't. It hurts that I can handle it but I can't do it to myself all right like choosing undo it was harder. Yeah but I mean that's I mean that's basically without the only thing that really cannot live without the channel and the magnesium the others and will probably the probiotics now but everything else I feel. I think I stopped taking it. I don't really feel the difference. Yeah I get that. It's it can be so hard to tell with some stuff I feel like and it feels like you can get into almost ritual for. 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. Yeah Yeah Actually I. I don't know like Omega threes. It helping me supposed to help my brain function. Yeah so it it. Is it helping. I don't know I'm still pretty out of it. Most of the time ed how added it would be without it. Yeah like hopefully it's better than the baseline. Yeah and that's what you're talking talking about the being kind of into Klein right now. And that's what always I feel like. The first thing that I end up doing is like going back to that way of thinking in 'cause 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 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 proactive stuff. I know you know I'm just thinking through it. It's like now yeah collective. Bingo activist is exhausting. Costing yes it really is like I think you said it earlier. It's like a part time job really being jacked in. You know it's kind of like I mean I know you're married now but it's like I tried dating you know like tinder and whatnot yet like part-time job in trying to date and so Same thing being proactive and looking into Like research researching and finding treatments and trying trying to find new treatments and everything. That's exhausting and I wore myself out in the beginning. I mean I was going to all kinds of different kinds of I was going to. Like healers ars lead traditional healers that we have here yet he tracks stuff. I went to I don't know if you know what a mob who is a Mahboob. I don't know what the English equivalent is. I guess it will be sort of like Not a clairvoyant. But maybe like a witch doctor. I don't like that term uh-huh okay but in that it's like yeah I can look. I'll look it up after now. I'm curious but in that way of thinking. Yeah I mean in in a Mabul is somebody who's a like a look at your throughout cowry shells their re things in the sand and bathe in you. Know like all this Thinki- crap you know they got to bathe in you know and I like I'm captain crazy stuff like hell it'll help. I don't care if it 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. Yeah I know exactly you know. Even at one time this was before I knew I was sick. I went to with a girlfriend of mine in then she wanted to go. See this like clairvoyant. You know like read your car. Serve Rita coury whatever. Yeah I went with her and and 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. It was like a piece of broken mirror put in your belly button like under your clothes rights. I put it over my belly button under my clothes and he was looking at is a broken mirror and he was like. You're ill he said you're very very ill and I was like no. I'm not untying Ya. Yeah it's like okay and then that was it in two years later the yeah two years later later it became obvious that that was true. That would be unnerving. Yeah Yeah but I've got a whole bunch of people you know new new. They've given me discussing things to drink. Yup had to bathe in plants and certain craft and whatever. Yep but I'm like I'll do it I don't care I don't care where it comes from care whatever you know I'm just one one guy he. He actually sacrificed advice to a What is it a ran? I guess was it a ram is that what you call it the horns yes and also gave me the Hor- one of the Horton's like wrapped up in a thing and I had to go bury it midnight in the sand the beach. uh-huh yeah totally crazy right but I did it. Yeah so totally I was like I don't know so it's really it's really I know for people like in the West. It seems so far fetched in everything but it was with this friend of mine. I told you about earlier would cancer. Yeah she and I both went to die if he could heal us. Yeah and so. We both had these things to do. So we're like okay girl. Where together in this? Let's go try it. Yeah and it's like it sounds far fetched like you said in a way but I feel like no matter where you are. There's always like another new and interesting thing that you can try that you would never expect like people do all kinds of weird tags to try to get better and you just. I never know like sometimes weird things work I think like 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 it that feels like a good idea then why not well all the way I look at it like I'm willing to try anything that stuff I'm not GonNa do anymore because it looks like it's it's it's very time consuming and these guys are like out in villages. I you know to our rights away and I'm not like I'm not willing to do that any level. I'm pretty much to try. I'll try anything you know to. Yes to pretty. I can't say okay. That's not the right term. But I'm I understand that I won't be cured Lord. I don't think I'll be bird but it's about it's about your quality of life I just want my life to be better. Yeah so if I can you find that will help my quality of life and and then the quality of life of my children. Yeah then that yeah. It'd be great. Yeah heritage is said you know if it's I mean a try Simba that was horrible You know the antidepressant for fibro. Whatever that was awful but I tried it in work and now how yeah like now? It's time to see what's next when you've got the energy to figure it out whenever I mean right now I'm just like I told you I'm just trying China's stabilized right now. I'm just trying to get on and I'm really just need a rhythm. Yep I'm very off off kilter. Yeah right now with my job because I have a different thing doing work. Instead of that is me a killed her And then so because I work at at my school and then and at my house. They also have Edgy workshops with kids at my house. my house. I work like all time and I think that is a big. The Bachelor is well. That's a big factor as well in my My decline I think is too much work work. Yeah like you're 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 yeah no I am I now I am. Yeah but it's just. Yeah it's like I need money to live. Yeah my son's university. I would like the expensive even if he is in France which is a lot less expensive than the. US unease still needs to live and he still right need. Someone needs something eat. Yeah Luckily job. So he says he oh he had some like a little part time job So that the bit but still. It's like yeah you know being a lot of people with chronic illnesses like you know you think about your future you know like I don't have a job I don't have retirement right. I don't have current plan. You think about your future you think. Okay what what happens if I can't work anymore what happens you know you think about stuff like that. So it's just like so your president stresses you out in the President Ya A- and of course and is there like is there Any kind of disability support that could be available if your health changed changed in Santiago. I just don't I don't know anything about that. Although I do know that it's really hard to qualify. Anyway with EMI FIBRO. There wouldn't be actually because so I'm an American citizen. I'm a Senegalese citizen. An and with my job I I had like a Senegalese insurance. This instance company like they don't they won't provide any kind of Like if I were to be hospitalized they cover maybe like twenty dollars a day. Okay even if it's expensive here I mean that's like you really don't want to go to a public hospital here okay. Yeah no so l. And as far as disability goes no I would not system that you would be able to participate in now. I mean there there might be but it's it's so Have like the amount of money that you would get on. Disability is so small. Yeah that it's just not it's not livable right and especially not with kids etc.. Yeah and I mean it's a very. It's very very poor country. Yeah and people live on set like so little here that ah the government doesn't really have a lot of money so what they hand out. It's like and I think I do have a retirement tournament plan I think with my with my will like with status at my job. I think my tire men be something like sixty dollars a month or something like that which is exceed dollars a month? Right what it sounds like. So it's not a it's not. I wouldn't get anything disability. Wise you know choir our you know 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. Yeah so I don't do right. That's not plant them. Not because it though I mean it's a major people. Yeah Yeah I I've been living on my own you know I'm almost fifty so it's like I don't think yeah. Yeah that's not plan B.. That's like very far down that list. Plan D. Your plan your plan. Yeah I at this point I really don't I mean I really don't have any other. Plans is just like escaped. He working. I did have one doctor. Who told me he? This like you know if you continue working like this in five years. You're you'RE GONNA be in very bad shape. Yeah Yeah you're like. Please tell me how I can work last and still pay my bills. I don't I don't yeah. He didn't mean it in a bad way no no warning but yes it's sites Har I do. I do have to figure out. I'm trying to figure out how I can work less and made money right. That's a whole other. That's a great question but not all I know we can solve and like the next ten minutes kind of thing but we know but it's something that I really have to think about because you know like can I live on less can I you know so but see. That's also just the stress and right like the day. I can't think about that because I'm I. You know when you have your health issues to deal with the other things that you can't deal with you know what I mean it's like you can't handle like I've lived maybe like two months with like no with like lightbulbs eight bulbs out in my house. Two months yeah. Is it bleeding. Yes ask me. Oh yeah definitely I mean I think we all know what that's like it's it's not. It's not about laziness is just like just about. Yeah I totally agree. Yeah I'm just trying to figure out like how you eat. Yeah you know now how to make to the kitchen so I can eat something you know how I can make it to the shower. You know I yeah. Yeah and to have a shower which is tough like just one thing at a time. Yeah exactly exactly exactly which we all have to learn all right. We'll have to learn how to how to. I think our perspective on things changes so much like what's important and what's not important at leased personal you know. Yeah Yeah I get really difficult. Sometimes listen to other people talk about their lives. They have the normalize and it's very hard not to be judgy and I don't I don't WanNa 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 this has his or her own right crap. Yeah I don't want you know what I mean. Yeah we all wrong. I don't WanNA judge somebody else's problem as like in say. Oh that's not a problem. Yeah but it's it is uh-huh yeah. Isn't it difficult. Sometimes when you hear other people go on vacation this year because aright yeah no I hear what you're saying because it's like both it's like on the one hand that that first reaction of just like Oh. I remember when that was a problem that I had a now. It doesn't even rank but on the other hand it's like getting getting into the kind of like judgy heads phase can be like toxic for yourself right like completely like 'cause 'cause like I know you're saying that to that you're you're saying it's like difficult but that's the thing it's such a knee jerk reaction because you're just like it just reminds you sometimes of how much your life has changed compared to somebody. Maybe maybe whose life is the way that you thought it was years ago. And you're like Oh my guy. Things have changed so much that this thing that they're complaining about is like doesn't even matter to me anymore but it doesn't matter. Yeah but getting sucked in is in a great place to get sucked in basically. Yeah but I mean and 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. You have perspective. Yeah you know different perspective in really really appreciate what you do. Have you know. And what he do what you can do And I think you at least for me. I find that I appreciate so many smaller thing You know have a sense of. I don't know if it's gratitude. Would I think this is a stronger. A strong word but this is sense of appreciation of things that I didn't have before You know and I'm tail and because it's like my field of possibilities is so reduce might even feel that exposure uh-huh but Appreciating just like very very small seemingly insignificant deficient things and that is an upside. You know it's dislike. You do change your perspective. You do see a a things from another person's point of view you know especially Like if I do travel I'm in a wheelchair you know and If we my son is studying Harrison so we went to to Paris dropped him off and so I wanted to around go to museums and everything. I can't walk around I. I can't stand for a very long time. Yeah for that so I rented a wheelchair. Well that totally changes your perspective. Yeah in how you look at people in wheelchairs. You know It it really does and so I think it That's good yeah. That's a good thing that has come out of my illness. I understand a the broader section of the population You know what I mean. You're able which is not I. I don't know if I like that term so much but if you're able there are a lot of things that you don't get You don't think that you'll think about that. You take for granted but once you're a disabled then you're like okay. I see these things you know. I understand things in. There's a connection another connection. You have with other people like even you Here talking we've never met You know but we have connection just because we have chronic illnesses and we can understand each other and I think that that's the added value. Yeah you know so so yeah there are. There are and something that I've been thinking about while you've been talking about. It is even just like things that I used to to worry about the. Don't take up any space in my head anymore Yeah like even just silly stuff like I kind of at the beginning here you and I were just talking about. I've been to a lot of weddings this summer. And it's 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 were like one of them was in New York City. Okay so we were in New York the great city of course. But it's just like it's so busy and people are waiting in line everywhere we're just like I'm really glad that we don't. That's not a part of our lives anymore like we're just we feel very relaxed and comfortable at like we don't stand around in lines very often and that Kinda it feels great and I know it's such a small thing it's small being. Yeah but it's like I don't worry about getting into places with lines that's just not on my radar radar and I. I'm kind of happy about that to be honest like it's working for me so yeah yeah yeah definitely things Mike all those little things you know all those little things inside Gaza. I don't know when I was in a wheelchair. We were in a museum in Paris. And there's this little girl who comes pass me. She's in a wheelchair as well as she was so excited to see me because I was also so in a wheelchair and waving and she was like how would you like. We were automatic. I mean she was like ten but we were like automatic automatic friends both wheelchairs so cute and it was really yet it was really cute and it was really like okay. We have a connection. Yeah you know we're in wheelchairs for different reasons and you know 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 taking up and walk but I you know I still need this mobility aid and just there's this connection there you know. Yeah I think it's good I mean I've met a lot of people online that I actually consider friends. Yeah just to having any you know definitely that yes so there is I mean I guess it's not just look at the bright side but I think there. Are you know good the things that got me into mindfulness. I'm in my attic fantastic. You know promoted everywhere he up in and I'm becoming sort of like the mindfulness missionary. You know everybody aid. You don't talk about it. Books looks have this week the have gone all in for me like works for everybody. Don't have to be. You don't have to be ill. It works Australian Lady. Yeah yeah something that I wouldn't have discovered right. You know you might not have slow down that much ever now. No No I wouldn't have I wouldn't you know I mean and I I mean overall overall it is right now. Yeah it's like it my life is crappy it really is. But it's like I do say okay. It could be worse it's crappy but I still have this. They still have that in very very difficult to do. Oh yeah you know when you feel like physically like crap until mentally you feel like crap. Yeah and like. I don't think if we look we've been talking about some of the good things but it's like 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 Mike 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 putting you know. Well I think we have to. We have to see that something that mindfulness taught me is that just you. Just you have to feel all pure emotions like you have to feel everything. Yeah that you're you're wherever you have to feel it. You have to have to get it out because it it'll just eats you up inside. Yeah you know it's like I don't feel like with my illness you know. In the beginning people people like will you need to fight this. Fight this Mike No. I'm not fighting. No I'm not fighting illness. I'm not by the idea. The finding it is animosity it's negatively it's violence in so I'm like no that's not not for me. Feel good to you. It doesn't work for me. No it doesn't acceptance. This is what it is like talking talking earlier. This is the new normal. This is what it is And then from there. Yeah we're still trying to get better. You know we still find you know looking for different treatment and ways of improving our lives. Yes but it's not like a fight. Yeah because I find that just too difficult is it's it's difficult to fight energy to I think like l. thinking about things that were takes energy. That doesn't appeal to to me. I know it works for some people but it's not for me either ill. Does it work for some people. I don't know I don't know it's I think it keeps keeps some people going. I don't know what it means for it to work or not work. That's a good question but well yeah I guess it is young now. I told you earlier but my friend had cancer thing attitude. She was dislike. I'm not fighting this. Yeah you know because the way she put in with like she's like I feel so much anger as it is about being ill that if I add onto that the animosity positi that the idea of fighting brings to just like I'll just fall apart. Yeah Yeah I feel the feel anger. I still feel angry angry. Probably every day at some point in the day I feel angry that I'm ill you know but it's just like okay. It's their the anger is there you know and I've been sick for. I don't know how many I can't even count seven years. No I don't know but you still feel the anger there. Yeah normal but just let it go let it go. Yeah Yeah and I think like there's also something about I guess I'm sure it occurs to everybody differently but there's something about like I don't WanNa be on the opposite Vita a fight with my body like I feel that odds with my body so much already you know probably every day all feel that way or say something but like I guess probably some people think of it as like. They're fighting against their illness but to me the way that actually feels is that I'm fighting against my body and I like I don't I don't I don't want that kind of relationship by body even if it is a complicated relationship these days. I don't know I liked it. Yeah I like to imagine that we're on the same team even if we're not collaborating very well right now right. No exactly. I knew if you my illness. Illness as a separate being You know I don't know if I if that understand that but my illness for me. It's like a separate being. It's it's part of me but it's almost like I have sort of like a dual personality. SORTA like part of me but it's separate at the same time flick coexisting existing space. Yeah you know and and I always kind of especially in the beginning. I was like invasion invasion of the body. snatchers aiding in my my space. My Body audie literally when it's an infection. Yeah right but it's separate it's separate. It's it's it's like I actually i. I talk to myself a lot now maybe age. I don't know if it's age or I don't know what it is. which is well? I always pretend like I'm just talking to the dog but I'm actually just and but I I actually talked to my disease. You know just like you just leave me alone today. Could you dislike emir break today like I just you know it's like separate from me even if it's at me you know yeah somebody that I follow on twitter. I think somebody that shows up on my twitter they the person who has ms I don't talk to them very often. So if they listened like Hello I have recognized your screen name on that anyway they have. MSN THEY NAMED THEIR MS. I think grover and they just talk about ms in the third person like as an impact. Yeah exactly yeah. I haven't seen mine mine. I should actually need it. Yeah it's something really horrible like Old lady name like Old Lady Name. Yeah and like. I shouldn't say a name because I don't want to offend anybody. But you know has that name is like just. I don't know what is like some horrible Greek. God do something like maybe Hera Hera was evil sometimes so yeah it's something I really feel like separate thing and I always felt like it was that that that being or whatever especially when I went to periods of rally or feelings of I just feel like that what was coming into my body and just taking up it was like a liquid in liquid form. Just going through on my body In pain and heaviness and it was an actual physical being you you know and that I don't know I don't know if it's a way of dealing with it. I don't know how I've always been it. I never never felt like finding it. You have asked away Yup. Sure away for good. Just leave but I never felt like fighting. No yeah that wasn't for me. Yeah no look how long we've been on here girl. We've been on here by two hours. 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 before we wrap up. I don't think so I told you I totally realize it was today. Luckily I went on twitter and I. Luckily I saw my email. That's how out I don't even realize it is the tenth of November. Yeah no I was just like Halloween was just like eighteen minutes ago. Yeah so I didn't really I don't really have any thoughts in my head like yeah. That's okay I don't think I think most people don't really repair but sometimes it's like maybe thought of something in the middle and managed to remember and saved it but I mean like you said we've been talking a long time so I think we've covered a lot for sure. Yeah Yeah thank you for listening to episode sixty two do of no end in sight. You can find my guest on twitter at our a car and you can find me on instagram twitter at Bennis B and of course you you find the show on instagram at no dot and dot in dot site dot plus. Don't forget to check out the noon. No end in sight collection on medium real find stories stories and essays about life with chronic illness. You can find that at medium dot com slash no dash and dash in dash site as usual Don't forget that I have a small facebook group called front. Chronic Hustler's for people 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 or do whatever you are with so I'd love it if you check us out at digital artisanal dot com. Thanks for listening.

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