60 - Reema Ahmad - Diagnosis, Gaslighting & Life with Long Covid

Episode 60 of the Long Covid Podcast is a chat with Reema Ahmad who has Long Covid following a 2020 infection but has had a difficult route to diagnosis. We chat through a lot of her experiences and what she has learned from them, things that have helped her and lessons learned.

This is a really frank and honest discussion and will hopefully make a lot of people feel validated and heard.

Reema's book - Un-Parenting

For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com

(music credit - Brock Hewitt, Rule of Life)

Transcript

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Welcome to the long COVID podcast with me, Jackie Baxter. I'm really excited to bring you today's episode. Please check out the podcast website, longCOVIDpodcast.com, where there's a collection of resources, as well as a link to the Facebook support group. If you're able to, please consider supporting the show using the link in the show notes. If social media is your thing, you can follow me on Facebook @LongCOVIDpodcast, or on Twitter and Instagram, both @LongCOVIDpod. I'm really keen to hear from you. If there's anyone you'd like to hear on the podcast, or if you've got any other feedback, please do get in touch through any of the social media channels, or email LongCOVIDpodcast@gmail.com. I really hope you enjoyed this episode. So here we go.

Jackie Baxter  0:00  
Hello, and welcome to this episode of the long COVID Podcast. I am delighted to welcome my guest today, Reema Ahmad, long COVID sufferer, and now published author as well. So, welcome to the podcast.

Reema Ahmad  0:14  
Thank you. Thank you for having me. Jackie. I'm looking forward to this conversation.

Jackie Baxter  0:19  
It's really lovely to have you here. So to start with, would you mind just introducing yourself a little bit? And what it is that you do?

Reema Ahmad  0:27  
Yeah. Okay, so I am a neuro linguistic programming based life coach, NLP for short. And I am also a relationship and trauma counselor, I have been a speaker, speaking in the area of sexuality, gender, abuse awareness. And recently also parenting. I'm a writer, I've edited a book, I've written a book, I also write poetry.

Jackie Baxter  0:52  
Amazing. That sounds like a lot of things.

Reema Ahmad  0:57  
Yeah, it's a lot of things. They're all happen over a long period of time.

Jackie Baxter  1:03  
Yeah, that's wonderful. So would you mind just talking a little bit about your experiences with COVID?

Reema Ahmad  1:11  
So the first infection I had was actually in March of 2020, when it was just beginning in India, and in my part of the country, there was not even that much awareness about COVID then, like we knew it was happening, because of my brother, who was in the NHS in the UK, we knew it was happening, it was coming. But we weren't really aware that the people were getting it in Delhi, and around Delhi. 

So when I got it, I didn't even realize that that's what I had, and I'd been traveling. So I came back home, and I phoned my brother, and he's like, Oh, no, this is all COVID, you know, and rest and do this and do that and isolate. So the first bout was actually pretty bad. I was very, very, very sick for about a month, I couldn't get up, I couldn't move. And then I continued to be sick for about four months, where my energy was really low, and I couldn't - my digestion, you know, just had taken a hit. And sleep was bad, my hair was falling off. 

But you know how it is, there was not a lot of information on long COVID back then, because it has just started happening in the world as well. So we knew because of my brother that, you know, some people are having persistent symptoms, and you can't really do much about it. So do as much as possible, and keep going. So I sort of kept going through the cycle of I would feel better, then I would take a walking and then you know, it would take a hit again, I would start yoga and would take a hit again, you know, then I traveled into December 2020. And I remember being very sick for a month afterwards. And I will put it down to, you know, chronic sciatica or that you know, I've always had breathing issues and things like that, I would fall sick really quickly since I was a child, I would always be like, Oh, you need to do more, you need to push yourself more. It was that kind of journey. 

And I think in 2020 end I got an infection again. And then the whole thing started started again. And it continued to go up and down. I started feeling better on March 2021. Those six months were like fairly okay. And I remember being very active, I started walking again. But again, after any activity, about a week of that activity, I would crash really badly with flu like symptoms, you know, body temperature, increased body temperature and sensitivity and all of my chronic sciatica would go up really badly. And there'd be all sorts of other issues. But I was not able to say, Oh, this is what I've got, because there'd be periods where I'd be okay when I was not moving around so much. 

And then in January, I got the Omicron variant in which was rampant in India at that time. And the infection itself wasn't bad, it was like a flu. It was about a week. But I just kept dipping and dipping and dipping. And then I had to get surgery for my long standing back issue in March of 2022. And after the surgery, I had to be lying down for about four or five weeks. So when you're lying down, you're just focused on the pain and you're thinking about oh no, you know, I've been in chronic pain for 20 years now I've got the surgery, life's gonna get better. 

But as soon as I started my physio and walking, everything just fell to pieces. It was just like my heartrate was out of control. My BP was dropping. And I think I was still not able to pinpoint that this has got anything to do with COVID. It was only because my brother was visiting and he was watching me and he was like you're not okay, you know, you're supposed to be feeling better after your surgery recovery. But you're just breathless and panting all the time. And, and then he took all of my stats and he was like, Oh my God, how are you even standing? How are you even doing this? How are you walking about and doing stairs? 

But I think at that moment is when it hit me that I had been in this phase for about close to two years. But I had been feeling all of these things in my body, but I had just been pushing. Because it also coincided with a personal phase in my life where I've done a lot of trauma recovery and healing work. And I was pushing myself to do more professionally, showing up more in terms of work, and letting go of a lot of old what I used to call laziness. But it was a lot of you know, trauma issues, a lot of depression and anxiety. So I was doing better mentally. But my point is just not coping. And then the brain fog and everything, all of it just sort of made sense when he said, you know, let's get your tests done and got my blood work done. And everything confirmed that, you know, it looked like I had Long Covid. 

So it was this long, two years of up, down, up, down, up, down, up down, where you have one person in the family who has long COVID, who's done so much work on it. But because you're in different countries, you're not really looking at each other. I kept telling myself Oh no, you're overthinking, it's your anxiety, again, you just keep making excuses for not doing this, not doing that. So it was very strange. It was all over the place. But part of the diagnosis also helped me accept that I have a limitation. And work my life around that - the first month after that was really horrible. Because you know, I've been looking at other people who haven't gotten better. So till the time you don't give it a name, you don't really think about, you know, this is what I've got, it may or may never go. So that was hard. But when I got over that and started my meds, and I noticed some improvement, it got better.

Jackie Baxter  6:57  
Yeah, that's interesting, isn't it? I mean, I've spoken to other people who have said, you know, when you put a name on it, it can help in some ways, because you know, it's like you find your tribe, isn't it? You know, there are other people out there, you don't feel alone, you can sort of discuss ideas with them and things like that. But I think you've just kind of pointed out a different side to it that actually, if you put the name on it, you look at all these other people who haven't recovered, and you go, Oh, my goodness, is this is going to be me. So there's two sides to it, isn't it?

Reema Ahmad  7:27  
Yeah, absolutely. Because still you haven't put a name on it, you're also trying to do quote unquote, normal activities like moving around a lot, stepping out of the house or walking. But now that you know that you're so fragile, and you're at increased risk, and you've already had it at least twice, you cannot afford a fourth or fifth, you know, infection, you certainly have to curtail your life as well. You know, there can't be any impromptu social gatherings, you have to really think about everything. How many people there, who's going to be present, are people going to wear masks and all of those things, you just - that kind of calibration that you have to keep doing. 

And when you have a name, you also start noticing other very strange symptoms that I had, which was like constant goose bumps all over my skin and my face, which wouldn't let me sleep, a lot of temperature dysregulation. And my menstrual cycle was haywire. And you know, I started having symptoms like a 50 year old woman, and I'm not even 40 yet. So when you also have a name, you start paying attention. And that can be very difficult. Because til you don't have a name you're really like pretending and I have lived on that kind of autopilot. It's not healthy. But pretending that I'm okay. Nothing's wrong with me - before I went into, you know, deep trauma work and all of that. That's been my default for 25 years. So it was easy for me to survive like that. 

But now knowing this is what you have. The Okay, what do I do now I came a little later, I think I was in shock. And I was miserable for about a month and a half. Then my brother really, you know, pulled me up and said, You know what, enough. Just enough, just pick yourself up. This is what we'll do, we'll have a system for you. And he really helped me. And I have a system and helped me pace and they helped me you know, you do this in the morning, this in afternoon. So I had a lot of help and support because I had somebody who had gone through that, and who was close. So when I got a handle on that. I think in September of this year, things started improving a little bit, but it took a long time for that to happen.

Jackie Baxter  9:33  
Yeah. And I think, I don't know if it's a human nature thing. I think, again, not wanting to stereotype too hard, but I think women maybe more maybe have this thing where we just get on with it. We have to get on with it because you've got responsibilities. You have to do this. You have to do that. And you just do it because that's what you do. And like how much do we put ourselves through? And again it's not exclusively any one subgroup of people, for want of a better word. But you know, we do - we all do it. And it does so much harm, doesn't it? But we do it without realizing as well.

Reema Ahmad  10:12  
Yeah, absolutely. And I think in my culture, there's this additional thing about - maybe that's all countries all over the world - not calling attention to yourself, you know, and not calling so much attention to yourself. So not talking about your symptoms as much. So even when people close to me knew I was sick, it would really take me to amplify everything I was feeling for them to be able to notice it. And that made me think about, oh, my God, this is so deeply ingrained in us, you know, we keep a straight face through so much. People get used to just seeing you as as a normal person with no illnesses, so to speak. And that also sort of coincides with how when a lot of people find found out that in March of 2022, I had spinal surgery, for chronic pain issues. They were like, oh, whoo, were you in pain all these years, I don't remember seeing you in pain? 

And it made me think about, oh, my God, you're brilliant at camouflaging. So people very close to me, also didn't know except for family that know I have chronic spine issues, that every step I take is excruciating. I just gotten so used to covering that up. So all of this also made me think about how much you're used to covering everything up, and just getting on with it, because that's what is expected of you. And that is what you also expect of yourself; to make a noise is to be weak is to be seen, as you know, you're attention seeking or life is difficult for everybody, how is it so much harder for you? 

But in that sense, the diagnosis helped me it gave me validation. It also gave me space to be able to say that, you know what, I can't do this. And because I had others in my family who'd researched so much on it. And there was so much advocacy, it was easier for those around me to hear things because it also came from my brother. So it also took him to advocate for me. She can't be doing XYZ. And that's it, you have to figure it out the rest of you, how are you going to manage your lives, she can't be expected to do this. So even then it took someone else to sort of advocate for me. And that says a lot about us.

Jackie Baxter  12:23  
Yeah, that people wouldn't believe you. 

Reema Ahmad  12:25  
Yeah, 

Jackie Baxter  12:26  
it took somebody else. That's really interesting, isn't it. And it's obviously fantastic that you've had somebody who's been able to do that, because you know, it is very hard to do it for yourself when you're ill. But it comes back to this like believing your patient. And the sort of invisible illness side of it as well. If you've got a broken leg, or you were talking about your chronic back pain, you know, that's something that's a bit easier for someone to see and to look at and to acknowledge. And it's much harder for them to say, Oh, well, it doesn't exist, because it's physically there in front of you. I think a lot of what people have struggled with with long COVID is that the biomarkers aren't necessarily there, you can't do a test for it. It's not visible in the same way. So it's much easier for people to sort of brush it under the carpet and say, Oh, they're just being difficult. And again, it's not everybody that's doing that. But it's a lot.

Reema Ahmad  13:20  
It's not everybody, but a lot of people are doing that; a lot of people, a lot of doctors are doing that, a lot of family members are doing that, friends are doing that. I mean, it's happened to everyone I know who has had a long COVID has been questioned like that, oh, but are you sure, maybe you should see this doctor, this doctor, oh, maybe you've got anxiety, maybe you've got depression, all of those things have happened. And it's very interesting thing about biomarkers, again, reminds me of this incident that when I went to my surgeon in March with my latest MRI scans, I went walking, and he saw my scans and he looked at me and said, How are you walking? Your scans are terrible. 

And again, that having that scan made it easier for him to sympathize with me. Yeah, you must be in a lot of pain. But when I went for just a consultation without my scans, he wasn't really that sympathetic, because I looked okay. You know, I'm somebody who is used to operating in pain, no one can really tell. And but you have long COVID where you don't even have those scans, or those biomarkers or those tests available except for maybe one or two countries in the world. So maybe think about oh my God, so many people are suffering. And there's nobody really curious enough to pay attention to what's happening. There is no curiosity. And that's sad. 

Jackie Baxter  14:37  
It is. Yeah, it's very sad. You mentioned you know, things like anxiety and depression. And, you know, I think they're very common with long COVID. But they're not the cause there as a result of it, you know, it's like, yeah, I'm anxious about everything. Yeah, that's because I'm ill, you know.

Reema Ahmad  14:53  
Yeah. And also because your heart rate is crazy. And you know, there's PoTS or there's Dysautonomia - there are all of these other symptoms which mimic anxiety. For example, a lot of people having, you know, night sweats - even younger kids, how do you explain night sweats in  12 year old boy? You can, you know, say that maybe a woman who's in her 30s or 40s, you can pass her off as Oh, you're just peri menopausal or you you know, menopausal. But what do you say about children who've got long COVID who have night sweats. I mean, what what's going on there? So there's a lot of these symptoms of the illness do mimic anxiety. And it's, it's really crazy, because you are I have questioned myself so much. I was like, Oh, my God, my heart is just all the time. It's just hammering in my chest, your heart rates is at 150 lying down, of course, it's going to be hammering, you know, what do you expect? But it's just, it's so hard. 

I remember going to the gynecologist because I was struggling so much. My cycle had gone haywire and night sweats and so much cramping and very weird, strange kind of symptoms that I was not able to explain to anybody. So I went to her and she took just five minutes to, you know, just ask me questions, and there was no curiosity about what else could be happening. And I'm telling her, you know, I have long COVID. And there was a lot of research to say that - I was trying to speak up for myself, but there was no listening about it as Oh, no, you just you just have anxiety, I'm giving you some drugs, and I'm giving you some progesterone, and you should be okay. And here we go again. I then just walked out. It was no use, no use really.

Jackie Baxter  16:31  
Yeah, it's so frustrating. You know, again, you see a lot of people talking about it on support groups and things, you know, how you've got this appointment, and you've been looking forward to it for ages, because you know, you've probably been on a waiting list for some time. And you know, and you've done your preparation, because you've got all your research, and you've got your lists of symptoms and your questions that you want to ask because you know that if you don't write them down, you're going to forget. So you've put in all of this preparation, and then you've gone to the appointment, which is a whole load of energy and stress. So that will have added, you know, loads on, and then you show up to your appointment to this person that you think oh, my goodness, they're going to make things better. And then they dismiss you. And, yeah, it must be a horrible, horrible thing for that to happen.

Reema Ahmad  17:13  
It is I remember freezing, I remember not being able to say anything, I was just so badly triggered. Because every time you have not been believed, be it by doctors or other times, it just comes up so strongly for you, as it is, like you said it's a frightening experience to be  in a clinic because you're masked up and you're not touching anything. And you're sitting like this so scared. And you also you're hearing people who are coughing or sneezing, at least that what was happening to me, I was just so scared because those are the places where infections like rampant, and you're so terrified that I'm coming here, what if I go back and I have an infection. All of that's happening, and you having to watch everything, and then you go in and you just you know, dismissed, you're invisible. 

I mean, at least for me, I am from a very privileged section of society in India, you know, what you call the upper middle class here, fairly wealthy. We've got doctors in the family. So it's a whole lot easier for me. I can do things on the side that other people can't, but maybe think about, oh, my God, how many people must be going through this? And they have no access to anything?

Jackie Baxter  18:18  
Yeah, exactly. Yeah. So you obviously have been on a very up and down experience over the last, what, two and a half years, as I think a lot of people have. Did you find things that sort of helped you?

Reema Ahmad  18:32  
I think the first things that helped was the basic medication to take care of the PoTS and the dysautonomia, because that was really severe for me. And when that was taken care of, I could actually pay attention to other things. And it took about a month for the medication to be you know, fine tuned. And, you know, for me to understand this is how much and how many times a day and all of that. Other than all of the other supplements and supplements for the gut especially that have really helped over - it took about three months for all of the supplements and prebiotics and probiotics and the nattokinase and all of those things to really kick in, and I started feeling better about in September. 

Now I think for me when I know that my symptoms are getting severe, three or four things really help immediately - one is just cutting down all sound and light and stimulation. So I'll just switch over to my - I call it my Batcave now so - I have things in place, everybody in the family knows that okay, now she's cool. She doesn't want to be disturbed, I text everyone Don't text me Don't call me and I just withdraw in that sense. So that withdrawing really helps to cut down stimulation. I call it being triggered. I don't have another word for it - every time you're triggered the emotional side of you also get triggered because you also start - you're afraid again for so many reasons. How long is the crash going to be? How am I going to you know, recover? Am I going and you have your appointments lined up, your work lined up, everything's just up for a toss. So I think this withdrawing for me for seeing and then focusing on how am I feeling inside. 

So if I have to have a good cry, I do that, it makes me feel like I'm able to think straight then. If I need to do my breath work, I do that - breath work has really really helped me, it has helped me regulate stuff. I feel a lot calmer throughout the day now. And ice packs are my life saviour. Icepacks on my neck, and you know, especially when I'm burning up, so one of my symptoms is I burn up, yeah, I just go all red, and I start heating up really badly, I will not be able to think straight because it's so uncomfortable. So ice packs really have. So I think these things Yeah, and I just get very mindful of how much energy am I going to spend the next two or three days. 

And other than these immediate things, the one thing that has really helped is pacing, you know, pacing myself really well. So I have my week planned in advance. So on Saturday, I'll sit and think about my week, and all my clients because I do want to keep working, although my work has come down to one session every other day. And I used to be doing four or five every day. But my work is very intense. So I also don't want to feel overwhelmed. So I do one a day. So I'll be sitting down on my calendar, planning really well. Okay, do you want to have a telephone call in the morning with somebody? Or do you want to have like a friend over in the evening, so it will have to be spaced out. 

And because of my book, there's a lot of promotional work, which again involves me speaking a lot, which is very exhausting for me. So I'll just if there's something intense going on, then there can't be anything the next day. And every time I've messed that up, like on good days, like the first week after my period is really great. Just something hormonally happens, where I feel better. And I tend to overdo then. So I've done it twice. And I've learned my lesson, I'm not going to do it this time. So to be really careful. So I think pacing is one thing that has really helped, that you have one activity, after that you rest and whatever, you know, is a good week, you know, depending on that, I think so that has really helped.

Jackie Baxter  22:12  
Yeah, it's so hard, isn't it? To make yourself do the resting or, you know, build in the time for extra breath work or you know, lying down time, or whatever it is that you need to do. It's so hard. I mean, I do it. I'll be sitting here editing a podcast or something. And I'll think, right, well, you know, I've done an hour, so I should go and have a break. But Ugh there's only like 20 minutes left. So I'll just keep going or, and then you know, you've got to be so strict with yourself, haven't you?

Reema Ahmad  22:45  
Yeah, you have to really be strict with yourself. And Well, luckily for me, I think because of you know, I think you know, when I look back, I feel like I had a lot of depression as a child and as a teenager. So I used to be in my cave a lot, just reading and curled up and reading. So I think it's, it's my default to actually be able to rest without feeling guilty. But the last three years I spent trying to not do that. So now it's come back to a thing where I have to learn to relearn to rest again, be quiet again and not feel guilty about it. Because  that's really hard. Because my mind keeps telling me You becoming that again. You know what I was while I was growing up, you becoming that again? Are you becoming lazy? And you've got so much opportunity and you know all of that self talk is something that really bothers me. 

So I have to really calm that down and look at No, you've got a diagnosis and doctors have told you this, you're not imagining this. You are really sick and you have to sort of them, like you learn. Yeah, it is difficult. It's not easy because it feels spontaneity. And I used to be very spontaneous. You know, let's go take a walk. Oh, it's a full moon night, I'm going to go see the Taj Mahal in the full moon. I used to do these crazy things all the time. And my dad would make fun of me for that a lot. And now I just can't do it. Even when I plan well. And there are days when I can't because something else has happened. And now you have to go rest.

Jackie Baxter  24:16  
Yeah, it really does. And you sound a little bit like me in that spontaneity is quite a big part of you. It certainly feels like that to me, you know, this ability to just look out the window like, right, I'm gonna go and do this or that or I'm going to go off on a four day hike, because you know, the weather is looking good. And it's these things that you can't do them because you're unwell. So it almost feels like it erodes who you are. Yeah. And then there's a whole lot of other stuff tied up in that, isn't it, when you start to lose your identity?

Reema Ahmad  24:46  
Oh, yeah, absolutely. So many relationships tied up and that you know, your friendships, especially in the city. How people know you - they just don't know you anymore. And they'll call you and they say oh, you know what this is happening. Do you want to go? And for you to spell it out to them. Oh, no, I can go. What's happened? Do you have a cold? And then to explain - No, I have long COVID. 

And like, for example, I just had my first book event on Friday, last week. So I was so careful, I did two whole days of complete resting, not doing anything at all to be prepared for the event. And it was a small gathering, I made sure it was small. But when I got there, five minutes in being there, and I started to heat up and my heart rates going crazy. But I have to stay there because it's my book event. And I don't know how I pulled through that, I just kept breathing in and out. But from the outside, I look fine. The pictures have come out lovely. So how do you explain to people that the mics too loud for me, I can't. So I have photos of me sitting like with my ears clamped, they couldn't take the noise, and I had to cut it down so I could speak. 

So there are all of these other attachments to it, how the world knows you. The world knows you as somebody, but you're not that anymore. But I think I've also been consistently trying to revise that by talking to people who are close to me, by putting out Facebook posts, or by doing videos with my brother, and just trying to normalize this for those around us so that it's okay for others too who these people know. And I've also let go of a lot of friendships where people didn't understand, or didn't want to understand, for whatever I mean, they have their reasons, but it was hard for them to understand or to accommodate to this new me. So I just learned to let go of them. So that part of it has also been strange.

Jackie Baxter  26:32  
Yeah, I mean, I think  probably everybody will have noticed it to some extent, you know, we're friends and family, or people close to you in whatever way, they don't understand it. And we'll try to explain it to them. But you know, that's quite a lot of energy, you know, for me to sit down and explain to my friend or my family or whoever, you know, that this is the thing, this is what's happening, this is what I struggle with, this is what I might need your help with. If I agree to meet up with you, then there's a good chance that I might have to cancel and you are going to have to be okay with that. Because that is just what it's like now. And you can go through this whole thing. But that's quite tiring. And I find certainly that saying it once often isn't enough, sometimes you then have to go back and explain it again. Because they don't really understand, and that is really hard, isn't it? 

Reema Ahmad  26:34  
Yeah, it is hard. It's hard. But I think it also sort of trains you or puts you through a process where you let go of a lot of people. And it's hard always to let go of people. But at least for me, I'll let go of people who would not willingly invest some sort of curiosity into maybe reading up material that I've shared with them. You know, it's hard for me to say this over and over again. Would you mind reading this up? You know, can you read this? Or can you, whatever, just try and find out on your own without me having to say it over and over again. 

So anybody who has been like that, like not really curious or not asking me what's happening, I've just like, let go of them and stuck close to like four or five friends who make the effort to understand and adapt around me. And that is enough, I think, you don't even have that energy anymore to have too many friends, or to do too many things. But I'm very grateful that I have a few friends who are very sensitive to my needs. And who ask questions. Is this okay? Is that okay? And most importantly, they don't take offense when I say things like, please don't sing that loud, or you know, Shhh. And they're okay with that, because they get that it physically sort of hurts me. So yeah, it's got both its upsides and downsides, I suppose.

Jackie Baxter  28:41  
Yeah. I mean, that's great that you've got some people because, you know, I've certainly noticed that this whole thing, it's very isolating in so many ways. I mean, you know, partly through lock downs, is obviously isolating for everybody, but when you're ill, for such a long time, it's a lot more on top of everything else. And, and I think having that support and having some sort of social interaction, you know, whether it's online or in person, you know, it's so important, isn't it? Obviously, has to be on your terms. That's the difficult thing, isn't it?

Reema Ahmad  29:15  
Yeah. But I think, you know, for example, my one of my closest friends also has long COVID. And hers is like really, really, really bad. But it's just so much easier to talk to her because we understand exactly what we're saying. And she'd be like, I can't type too long. So I'm going to send a voice message and I'm like, yeah, okay, I know exactly what why this is happening. Or sometimes she'll just send me like hints and I'll understand the whole thing. And so it's also sort of led to these kind of very deep intimacies with people where they're also struggling in their own way, and you sort of understand each other so well. Like when she's really sick, she doesn't have to explain to me why she's not answering the phone or why her texts are like so irregular. I just know what's happening. The same for my brother, I've got two other friends who have long COVID. My dad's got long COVID. 

Yeah, there's a lot of long COVID in my family, my mother's gone nuts, seriously trying to understand what's happening. And it's very hard for her to modulate her voice. And it's been a challenge for us to explain it without getting triggered. And there's been fights and arguments. But now we're sort of arriving at a place where it's sort of easy. At least my dad and I get each other very well. And we've just, you know, we'll WhatsApp each other if we can't go see each other, or we're on different floors. So it's funny as well, you're like Whatsapping each other. In the same house, I wHatsapp my son from my room. So yes, it's difficult, but it's also gives rise to these other different opportunities of relating, which, you know, can be meaningful as well.

Jackie Baxter  30:51  
Yeah. And I think, you know, you've just put your finger on it, having people who understand, you know, other people with long COVID, or with some other chronic illness, you know, they understand in a way that a healthy person can be very supportive, and they can be amazing. But they don't get it in quite the same way, because they haven't physically experienced it. And I've certainly find that really useful to have those people.

Reema Ahmad  31:15  
Yeah, yeah, absolutely. Yeah. One thing that just came up for me is that kind of comparison guilt that happens to me a lot. Because I know very closely, a lot of people who have LC, and they all have varying degrees of it. So two, three people have at really bad where they're, you know, even getting out of the bed is a challenge, where they're walking time is some three minutes to five minutes per day. And even that has a huge cost. 

So when I think of myself, it's sometimes hard for me to even say to myself that I have LC because I'm not as bad as they are. But I have to then come back to myself and say, but you know, this is your experience, and you cannot compare yourself to others. And yes, they do have it really bad, but maybe you have it bad in other ways. And it's okay. So there's that kind of guilt that I get caught up in really quickly. I don't know if it happens to other people. But it happens to me a lot. Like I will deliberately tone down my happiness, or I will not share stuff that I've done with those friends. Because I don't want them to feel like they're missing out. Or, you know,

Jackie Baxter  32:22  
Yeah, you're absolutely right. And I think something that someone said to me was really helpful was - just because someone else has it worse, doesn't mean that it's not awful for you. And actually, you know, making that comparison and saying oh, well, that person is more ill therefore my illness is not valid, is actually you know, you're gaslighting yourself when you do that, aren't you? And actually, that's not helpful, you know, your experience is your experience, and we're all living our own personal hell, aren't we with this? 

Reema Ahmad  32:51  
yeah, different combinations.

Jackie Baxter  32:53  
Exactly. You know, so if you're having an awful experience, then I guess, yeah, that is valid. And important, I think, yeah,

Reema Ahmad  33:01  
There's this interesting thing that's coming up for me. And I think I should say that I also become sort of wary of being around very healthy people. It makes me feel like I'm dragging them down. I don't know how to explain it. But I recently met someone really nice, who I've known for like a good three, four years, and something's developing romantically. I'm very happy. It's also one of those things that has helped me in this very difficult year. It has helped cheer me up a little bit, it has helped me you know, he's been encouraging me and be there for me, and he's not judging me when I'm crying or have a meltdown and things like that. 

But it also makes me very afraid. Because, you know, I don't know how I'm going to be like, when. So things which are just so regular for couples to do, like meet up or have fun or go for a walk, I can't do any of that. And it upsets me to think about What is he going to have to put up with? And we have these conversations every other day, because I have mini crashes every other day. So I'll be glum. And be like, I don't know, what have you got yourself into and things like that. But it's encouraging to hear the other person's response when he says things like, but you've been getting better. And it's okay for you to have like, low days, it's alright. It's, you know, your personality I'm after really? And I'm like Okay. But it just made you think about many things. It makes dreaming very hard.

Jackie Baxter  34:28  
Yeah. And hoping for the future and all of those things. It's very hard to know what your future is going to be. But you know, we have to keep that hope, we have to, but it can be really difficult.

Reema Ahmad  34:38  
Yeah. Because in some days when people say things like, oh, but you will get better. You just don't know if you will. And you just want to snap But how do you know? Because you see so many people who have been getting worse. So it's just so hard to plan anything, to plan trips or you know, you're traveling together or even simple things like - there was so many things that used to enjoy doing with my son - he is 15, very active, goes to the gym and exercises, and I can't keep up with him. And it's hard. 

Jackie Baxter  35:09  
That must be really difficult. And I think we do this thing, I do it as well, I'm constantly expecting my partner to just walk out the door and not come back. Because, you know, why would he want to stay with me? And we do this thing, don't we, where we just don't see our own worth. Because it's like we were saying earlier about when you start to lose your identity a bit, because all you are is someone who's ill. But that's not all that you are. It's just kind of what it feels like. And somebody else is able to see that, like my partner can can see much better when I'm doing better and when I'm doing worse, but I can't because I'm sort of just  so in it.

Reema Ahmad  35:47  
Yeah. So in it, yeah, it's really difficult.

Jackie Baxter  35:52  
Yeah, I think we need to remember to see our own worth better.

Reema Ahmad  35:56  
And think we do. We need to remember also, you know, remember our life outside of this in terms of the work that we've done, or the possibility or, you know, there's something a friend of mine says to me often, and I just thank her so much for it when she says that - that you're who you are is also what's in your mind. And there is no limit to that. Who says physical activity is the only way of measuring the worth or activity? Look at your mind, you continue to write and, you know, do so much different kinds of work. I mean, there have been days when my clients have needed me, and I've not been able to get up. So I've been on call with them with, you know, on headphones and lying down and just talking to them. That's worth something, you know.

Jackie Baxter  36:39  
Yeah, definitely. And, you know, when you look back over and think, Well, I am better than I was, even though I'm not as better as I want to be. That's terrible English, isn't it? You know, you're able to kind of see the improvement over the longer term, rather than when you look back two weeks, you know, it's difficult to see usually. But also over kind of what you've managed to do. You're managing to keep working. You know, that's amazing, you know, people who have done all this advocacy work, people who have been working with governments, people, you know, have been doing all of these things, despite being sick. And that's amazing. And you've written a book as well! We forget all the things that we have managed to do, I think,

Reema Ahmad  37:18  
yeah, we have managed to do despite everything, you know, and maybe because of everything, I don't know. This experience also makes you expand in very different interesting ways. It adds, at least for me, you know, my book, the quality of my book changed after I fell sick. So the first half is very different than the second half is very different, because it goes in way deep into things. Or even when I talk about things now, I'm just so much more aware of how different people experience the world very, very differently. Or there is this at least for me, since I've fallen sick, the capacity to forgive has increased, really! 

A long term friend of mine, you know, we stopped talking when she got long COVID. Last year, she got COVID. And she's still not recovered. And she was so sick, and there was no way for me to be able to understand what she's feeling. Of course, I had my brother and I would understand and not call her, not text her, but it was still hard because I felt rejected, that, you know, she's not reaching out, she doesn't reply, she leaves your messages un-seen and all of those things. But when I experienced severity of symptoms myself, I began to understand better and there was that forgiveness, and that willingness to just wait that has emerged over time that, you know, maybe she will if she feels like it, you know, things like that.

Jackie Baxter  38:37  
Yeah, I mean, I really hope that this is going to raise a lot of awareness of illness in general, I think maybe, or long term illness in general, you know, I mean, I've certainly realized myself over the last couple of years, that although I thought I understood, I had a few friends who had ME before COVID. And I sort of thought I understood it, and I now realize that I didn't at all. So I kind of hope that it will have raised a bit more awareness about just dealing with these sort of conditions and what people are going through and and also what should be done to make life easier for them, you know, in terms of, I don't know, disability provisions or you know, whatever it is. Yeah, you have to hope that something

Reema Ahmad  39:22  
Yeah, yeah, yeah. You know, even simple things like how we talk to each other. You know, I remember when I first fell sick a simple statement like Get Well Soon would make me hopping mad. What soon? There is no soon in my life anymore. What soon are you talking about? I don't know if there ever will be a fully recovered me or, you know. So I began to pay attention to how these very sort of insidious ways in which we say things without really understanding how they may hit the other person. So and what is it that they need more than what is socially appropriate for us to say when someone's sick or for example, when someone's lost somebody - it's made me think about these things. Also, what do you say to someone who's lost a loved one, you know, Oh, I'm so sorry. It doesn't mean anything. 

So this sort of illness has also, at least for me, made me able to sit with discomfort and other people's rage or anger or grief in a way that I was just not able to do before. So that kind of expansiveness has happened. And I feel like maybe if people start paying attention to things like this, things could be easier for so many others. You know, I've written about it so much on my Facebook, I keep writing about these things that I experienced, because that's one place I draw a lot of strength from - a lot of my communities are on Facebook, and I don't feel alone so much. So I do see that kind of engagement slowly in pockets, you know, starting to happen. How can we be more mindful in physical and non physical ways around people who are sick?

Jackie Baxter  40:54  
Yeah, definitely. I really, really hope so. That's one of the things that I really hope will come out of this. It's more sort of understanding, more compassion, more interest in how other people are feeling. Well, thank you so much for joining me today.

Reema Ahmad  41:12  
Well, thank you. It's been it's been lovely talking to you.

Jackie Baxter  41:15  
It has

Thank you so much to all of my guests, and to you for listening. I hope you've enjoyed it, or at least found it useful. The long COVID podcast is entirely self produced and self funded. I'm doing all of this myself. If you're able to please go to buymeacoffee.com/longCOVIDpod to help me cover the costs of hosting the podcast. Please look out for the next episode of the long COVID podcast - it's available on all the usual podcast hosting things and do get in touch - I'd love to hear from you.

Transcribed by https://otter.ai