Episode 11: My diagnosis has changed
Download transcript here or read below.
I got COVID in January 2021 and I spent last year in a pit, stuck at home, no energy, in pain, dealing with the vague endlessness of Long Covid. In the middle of January 2022, I posted a one year update podcast episode where I told everybody how bad Long Covid continued to be. And then, at the end of that month, I had an in-person appointment with the Long Covid Clinic in Liverpool where they did a test and told me what brand of Long Covid I had. This episode is all about the disability COVID has left me with, POTS.
Speakers: Gabrielle de la Puente and Zarina Muhammad
Transcribed by Michael Lacey
Jingle by Toynoiz
GDLP - OK. In terms of this episode, I want it to be super-structured, super-informative, but because I’ve got POTS, this isn’t going to be structured or informative. It’s going to be a mess!
GDLP - Hello and welcome to the latest episode of The White Pube podcast. My name is Gabrielle de la Puente…
ZM - My name is Zarina Muhammad.
GDLP - We run a website together called the White Pube where we publish writing about art, games, books and whatever we want to write about. But we’re not going to be discussing any reviews or anything like that on today’s episode because we’re going to be talking about my body! If you have been following us for the past year or maybe this is news to you, I got Covid in January of 2021 and it was dogshit. Then things just got worse. My 2021, looking back, was a messy, messy blur of Long Covid, which is just a general term for people who get this virus and then get fucked up by it. I didn’t know what was wrong with me, I could tell you the symptoms - I knew I had fatigue, muscle pain, heart palpitations, and brain fog, and probably a million other things that I can’t remember at this point because I still have Long Covid. As that year unfolded, we were releasing podcast episodes that detailed the weirdness of it and the panic and the sadness of becoming disabled. We released a one year update in January 2022, and then one week later, my diagnosis changed, and we have yet to release an update. So this is it. My Long Covid was revealed to be POTS, and I’m not going to say what POTS is straight away and reveal everything. I’m going to say that people should know what POTS is because it turns out a lot of people’s Long Covid is POTS, and for me it took one whole year of diagnosis, because my doctors didn’t know what it is. I’ve heard from many other people who have gone through the exact same timeline, one year, a year and a half, of having all these horrible symptoms that are left completely unmedicated, because either doctors don’t know what it is or the general population… even though 0.2% of people have POTS. That’s a crazy number! But is also just on the cusp of not being popular enough to be in the general vernacular. If the paramedics that took me to hospital had known what to look for, I could have been diagnosed straight away. If the doctors had known what was going on, they could have diagnosed me and put me on medication, and I wouldn’t have lost months and months in the house, fucked up and in a very dark place. So yeah, today’s episode is about POTS. What is POTS? I keep thinking, I’ve had POTS for so long and no one’s bought me a pot. Like, I should get a consolation pot!
ZM - Are you telling me that for Christmas you would like a POTS pot?
GDLP - I would like a POTS pot, yeah.
ZM - I’m going to make you one.
GDLP - That’d be nice. Write that down.
ZM - Present sorted.
GDLP - So that’s today’s episode, and also just like, a catch up because I’m probably sounding much more coherent than I was, if you listen to the one year update and this is why. I got a phone call from the Long Covid clinic at the end of 2021 saying we want you to come in for an in-person appointment. I had only had one phone appointment and it was disastrous. This horrible man on the phone told me that Long Covid was a very British thing - insinuating that just because we have a healthcare system and social welfare that people were going on the sick in order to get benefits. That phone call was horrible. When I said to him, can you do anything about the muscle pain that I’m feeling? He said, well, we can’t really treat pain. Everyone’s pain is different. I was like, how the fuck are you a doctor? He should be fired. So I got this phone call from the Long Covid clinic and I was so confused because I was like, I don’t want to speak to these people ever again. But it was somebody else, and they were saying OK we want you to come in for an in-person appointment. At that point I was so hopeless that I thought OK, this is one more thing that I do, I’ll go along to it, whatever. It wasn’t in the same address that I had seen them at before, and it was a doctor who I didn’t know and he said, hello. I’m the new Long Covid clinic doctor in Liverpool, I’ve taken over from the last one because the last one got so many complaints. I was like, I was one of those complaints. This is great, I love it when criticism works. He asked me to tell him my symptoms from start to finish. It felt really attentive. He looked at me and he said, right. There are different things that Long Covid can be, according to the research him and his team had been doing, it falls into a few different categories. For some people it really affects their respiratory system, for others it’s really a case of energy, so people with chronic fatigue, he said for others they seem to be falling in a dysautonomic category. Then he looked at me and said, that’s what you’re in. So Dysautonomia refers to the autonomic nervous system, so all of the stuff that your body should just get on with. All the little jobs - heat regulation, digestion, heart rate, all the good stuff that we just do without thinking. Dysautonomia is when all that goes wrong. He said your symptoms point to dysautonomia and in particular they point to a condition called POTS. The name rang a bell because I’d seen a few tweets about Long Covid and POTS. It’s hard to look back at this because it just feels painful and cruel, but I remember going to my GP and every single time I’d go with this big long list like, please help me. I remember saying, one of the things that I have heard about is this thing called POTS and maybe that’s what I’ve got, can you do a test? And she just looked at me and said no no no, we can’t test for that. It would take you months and months to get tested for POTS. I thought oh OK, it would take months to get tested for POTS, she’s the doctor, so now that she’s said that, it’s the law. I was just so vulnerable and out of it and not able to advocate for myself because I had no energy, brainpower or confidence. When you’re sick with something and you don’t know the name of it, it’s hard to insist, because you’re just sad. So when the Long Covid clinic guy said it sounded like POTS, my first thought was OK, I’m sure this will take another six months to get to the bottom of. But it took ten minutes. So this guy, I wish I knew his name. Handsome guy, handsome doctor, walked out of the appointment just in love. He got me to lie down on a table and he took my heart rate and blood pressure, and then he got me after it was completely in a restful state, he got me to stand up. He actually just said lean against the wall and I still had all the bits on me so he could measure my body and what was going on. I didn’t know what he was looking for but he said, after a few minutes, how are you feeling? And I was starting to get really dizzy but I felt like I needed to stay standing up because he was doing his tests. I was just getting so dizzy and he said OK, you’ve got POTS. I know I’ve said POTS a million times and I’ve still not described what it is. But I will now. He sat me down and let me catch my breath a little bit. Considering I was just out of breath and dizzy from standing up, that’s how bad a state I was in last year. For anyone again who didn’t listen to the earlier episodes where we go through the shitty year I had, I ended up for about six months not being able to leave the house because I was so tired. That’s the state I was in. He said me down, he said OK, POTS is a condition that stands for Postural Orthostatic Tachycardia Syndrome. Postural refers to your posture, orthostatic means in an upright position, tachycardia is when your heart rate goes too fast, and a syndrome is… I don’t know. We know what syndromes are. He said to me that is caused by a dysautonomic condition, it is a dysautonomic condition. And it is most notable for an increase in heart rate by 30 beats per minute as a minimum on standing up. So because I was completely unmedicated last year, every time I tried to move my heart rate was spiking. Because it was spiking so much I was having endless fatigue because my body was over-exerting itself by doing the littlest amounts of activity. All I knew what that I was tired and in pain, I didn’t know the cause. I couldn’t figure it out. I can’t look inside my body, I don’t know these things. So it drove me mental. It was kind of interesting because he went on to say that it is not just your heart rate affected by this. He asked how I had been dealing with temperature and I said well, as soon as the Summer picked up last year, that’s when I became house bound. I was basically bedridden. All I remember last Summer is I lay in bed, I watched the entirety of the Real Housewives of Beverly Hills from start to finish, and I also watched every single olympic event, because I was in bed and I had nothing else to do. Great TV choices but also, bullshit prison life. He said that dysautonomia affects how your body regulates temperature, it can’t regulate temperature, and also, if you think, every time I move my heart rate spikes by a minimum of 30 beats - that’s raising my temperature as well, so it’s just a mess. He asked, he’d gone down the list of symptoms after asking me, when I mentioned muscle pain and I said it’s all in my legs. He explained that with POTS, victims - oh my god! Patients…
ZM - I know what you mean…
GDLP - Patients have a lower blood volume than regular people, because of issues with the heart. If you’re in one place, for example sat down in a chair like I am right now, the blood will sink to my legs and especially if I’m stood up, it will sink to my legs quickly and that will make me dizzy. That is why the heart over exerts itself, to try and pump the blood around more efficiently. He said, because the blood sinks into the legs, it makes a buildup of adrenalin happen and that’s the pain that is spiking my legs. Adrenalin sounds like a great thing - I’ve been an adrenalin junkie for my whole life. Big on rollercoasters, obsessed. This was not a good type of adrenalin, this was genuinely painful. And a lot of the conversations I’d have with doctors over the last 12 months before this Long Covid clinic appointment were about pain management, they were giving me all these different types of painkillers and nothing was working. I was on the highest levels of Codeine and my legs were in agony. Now I know it wasn’t something pain relief could have done anything for, because it was about circulation. I was in a terrible, horrible cycle that I didn’t know anything about whereby I couldn’t move much, so the blood was pooling in my legs. If I’d known to move more I could have got the blood moving, but I couldn’t move more because I was so fatigued. Every time I did try to do something the fatigue got worse. It was like a black hole.
ZM - It’s just a vicious circle right? Each symptom aggravates each other… that doesn’t make grammatical sense. The symptoms kind of, compound each other, right?
GDLP - 100%. Yeah. So we sorted the diagnosis so fast. GP for six months wouldn’t give me a diagnosis, bullshit, it was just like, a lie, this guy took my heart rate, which at that point was 92 at rest. When I stood up it went to 137. That was just a casual, me going sit-stand. It’s so bad!
ZM - You just stand up and it’s like you’ve done 30 minutes of cardio.
GDLP - Exactly.
ZM - Oh god.
GDLP - So I said, OK, what are we going to do? Can this be cured, I need help! It can’t be cured, unfortunately, that would have been a great podcast update.
ZM - I’m fixed!
GDLP - He was like no, it can’t be cured. It is early days, people have gotten POTS off the back of flu and other viruses, and also pregnancy, forever. So yeah I was asking, what do we do, what is the management. He said because your heart rate is one of the biggest issues, we put people with POTS on Betablockers, which are essentially a pill you take once or twice a day that slows your heart rate down. People actually take them for anxiety and migraines, and plenty of other conditions. What I’ve learnt is that there are no specific medicines for POTS. There are medicines for other diseases and doctors just have to pull from other treatments in order to mitigate the symptoms, which apparently causes a lot of issues because GPs feel like they don’t want to go rogue - they don’t want you to take a heart medication for a dysautonomic condition, and they can be quite reluctant about prescribing things like that. This guy was like yeah, you need to go on betablockers right away in order to slow the heart rate down. He also said you need to eat more salt, and I was like, great?! Eat more salt and drink a ton of water. The explanation if you’re following along with the science, is that because I have a lower blood volume now I have to top up those fluids. I drink 6 or 7 litres of water a day now, and because I’m topping up the liquids I also need to top up the salt in order to not get as dizzy and nauseous as I would otherwise. Part of that, changing dietary requirements, also means I can’t have full meals like a normal person who would normally have breakfast, lunch, dinner and one or two snacks in between there. Now I need to have only snacks throughout the day, but closer together. Constant little bits in order to keep my energy up and the explanation for that is that when a normal person eats food, their body takes a bit of energy to digest it. Because my nervous system is messed up, my body takes like, way too much energy to digest and that can cause an instant crash, problems with fatigue. Just like that one conversation, maybe we were there for 45 minutes, it made the entire previous 12 months make so much sense. No one told me I needed to drink the most water in the world, no one told me I couldn’t have breakfast lunch and dinner that I should only eat snacks, no one told me I needed to slow my heart rate down on purpose. Which sounds like such a dramatic and invasive thing to do, no one told me I needed to eat salt. It was just a horrible mystery. Of course you can’t figure that shit out on your own. It upsets me that the doctor couldn’t figure it out either. I appreciate that doctors are under a lot of stress, and have more patients per person than ever. But like, if 0.2% of the population have something, maybe you should know what it is? I should maybe know what it is! I wish I’d known what it was before this so I could look out for it. I wish the people around me had known what POTS was so when I got sick they could say, maybe that’s POTS? Like, man. Yeah.
ZM - Knowing what to identify, I guess. It’s crazy that you went to your GP and said, it could be this! And they went (scoffs) …probably not, it’s so rare. Take 6 months… and it was.
GDLP - It was! And I never followed up because my head was gone. We left that appointment, I think it was the 30th of January this year. I was skipping. I mean, I wasn’t on medication yet, but I was skipping. I was like, oh my god. I felt like the world had changed. I felt like everything had been coloured in. I felt so validated. I know people say when they get a diagnosis they feel validated. It is such an emotional thing. I had a year of myself doubting that I was as sick as I was. No one could put their finger on it. I was like, why am I this tired? Because it’s not even tiredness, it’s like, pain. My bones feel bruised. Everything feels terrible. I can’t get out of bed. Once I’m in bed, I can’t get up. I can’t think straight. All of this mess, getting out of touch with reality. I can’t say that I doubted myself but I was worried that other people thought that I was putting it on, or something. I was worried that it wasn’t anything specific, I would never find an answer for it. For a doctor to just do one simple test to show me the numbers as he’s doing it, so I could see what was happening inside my body. A test which I could have done at home, if I’d known what it was. It made me feel like I wasn’t crazy. I felt like I came back into my body. It’s so dramatic.
ZM - So interesting. It makes sense though. It must have been affirming. The way that you’ve been feeling all that year, it must have felt affirming that you weren’t being dramatic, but also it must have just been such an emotional appointment. I bet you that handsome doctor had so many of those where he was just like… what a good day for him as a medical professional. When he dies his obituary will mention that, I reckon. That must be like a life highlight, surely.
GDLP - Covid has made so many people ill, and so many of those people are still trying to figure out what their version of Long Covid is. He must just do that all day every day. He must just be like, You have got lung damage. You have got chronic fatigue. You have got POTS. You have got something wrong with your stomach. You have something wrong with your skin. It splits out in a branching narrative for people and he’s just telling them which branch they’re on, instead of people feeling as lost and directionless as I did, which is horrible. So I had the diagnosis, he wrote a letter to my GP saying, she needs to go on betablockers. I wait a few days, because the bureaucracy takes time. I call my GP, I say, have you had a letter from the Long Covid clinic? They said yes, and I said OK well I need to go on betablockers. He said why and I said because I’ve got POTS and he said, what’s that? And I was like, OH MY GOD.
ZM - This sounds like the problem with GPs like, it’s just so generalised. Literally, general practice. What’s the point of you? It’s just too general, there’s no specific… all they’re good for is prescribing antibiotics.
GDLP - The thing is that a switch had flipped in me. Now I’m going to fucking school you on what this is and get the medication that I need. So I get the betablockers, I take a betablocker, and I feel literally the second I take it that something has changed. That evening I said to Michael, shall we go the offy? This is a huge thing for me to say, because I had been to the offy once or twice in the past 12 months, which is at the end of our road, and both times I’d been it had knocked me out for two days, it was that difficult to do anything, there was a cost to everything I tried to do. We were walking really slowly and I just looked at him and I remember saying, I feel like my heart has gone. I feel like my heart isn’t there anymore, because it’s so quiet. I hadn’t realised how bad my chest had been. It had gotten genuinely so normal for me to have a max heart rate at all times that I thought that was normal. As soon as the betablocker dropped my heart rate down, the heart was gone again. I was like, oh yeah. Before I got sick I couldn’t feel my heart unless I was doing exercise. Generally sat there day to day, I wouldn’t think about my heart in my chest. It was incredible, and we walked to the shop and we got a glass bottle of coke and then we walked back home and it felt do-able. I thought, oh my god. I had a really bad headache while the medication adjusted but I was just so excited. I couldn’t stop telling people, I was like, oh my god, oh my god, I’ve got a diagnosis, I’ve got a heart condition! It was the best thing in the world. It’s not good news, none of this is good, but it feels relatively so amazing to have…
ZM - It’s the context, right? I remember you sending me a PDF leaflet and I felt that like, relief, like, oh my god, it’s got a name. That’s what it is. It’s the relief of being able to identify something. The unknown is terrifying, you don’t know what it is. It’s batshit chaos, right? Hectic. But being able to identify something, drawing a line over it, that feels good. And that’s the context right? You know what it is.
GDLP - Exactly. It was huge. It was really nice to have a nice thing to tell people, like, to have good news to share after being all doom and gloom for 12 months. It made such a difference then in the months following that I knew what I could and couldn’t do physically. I knew I couldn’t stand up for too long because my body doesn’t allow that anymore. I knew that I couldn’t eat full meals, I knew that I did get to eat lovely beautiful snacks all day instead. I knew that I could try compression stockings and compression tights to help circulation. I knew that there was a reason when I forgot things or I couldn’t process things quickly and I knew that the fatigue wasn’t going to stop. I knew there would still be days when I would struggle with all the symptoms that totally dominated 2021 because I have this thorough chronic illness that affects every part of my body, so I can’t always win. I definitely felt that as the Summer approached, as the weather started getting hotter I was finding it really difficult to think again. Having to avoid the sun. I’ve always been someone who lies out in the sun so that all the freckles come out and I get a tan. Now I’m like, get the fuck away from me. I don’t want the sun. I will be pale forever! Because I know that I can’t handle it anymore. I’ve conceded that. Crazy.
ZM - It’s crazy but it shouldn’t feel crazy, it should be a recognisable thing, you’re right. What’s happened since that diagnosis?
GDLP - Since that diagnosis, as I said, I knew what to look out for. I started to be able to do more things, I feel like it took me a while to want to do more things. I feel like only in the past month have I started sincerely to want to do more things. It’s like, someone had unlocked the prison gates and I could see that the door was open. I was just not ready to run out the doors, I didn’t think I could. I was so scared of upsetting the limits of my body any more than like- because for a full year I’d been conditioned, with the reality that every time I did something I would have to pay for it, physically. Even if I do go outside, something might happen. If I stand up for too long, I’m going to faint. If I mess up and don’t eat regularly enough, I might faint, if I mess up my posture and positions I’m going to have leg pain. If it gets too hot… I was just, I’ll stay here in the house where I’m safe, where all the things I need are, where I can drink 8 litres of water and there’s a toilet right next to me. I was like, if I go out what if I can’t find a toilet, and I’ve got to drink all this water… the logistics of having this condition and starting to go outside, I couldn’t compute it and I just didn’t want to take the risk. Then we got an email from Johnny Vegas. Or his team. And then shit needed to fucking fast forward, because this man wanted us to be on a Channel 4 documentary about ceramics or something.
ZM - This is such a loopy element to the story.
GDLP - Such a loopy element. I was definitely not ready to say yes to this email, because this email was like - come to London to film something. But at the same time I was so high on the joy of being on betablockers and I hadn’t seen Zarina for 2 years, hadn’t left Liverpool since before the pandemic. The whole thing I just thought, fuck it. I didn’t say fuck it, I said, I really want to do this thing but I can’t. I was speaking to this Whatsapp group I’m in of a few people with Long Covid and they all happen to be based in London. One of them said to me, you could do it if you wanted, and here’s how. As a group they painted this plan to me, like, you get the train, get a taxi to the train station, then I will come and pick you up with my Mum in the car, and then you can stay in our house which is right next to Euston, and then you can ask Channel 4 to pay for taxis there and back, and then you can just rest for 24 or 48 or 72 hours depending on how fucked it makes you feel. Then you can go home, get an open return and travel when you are ready. Suddenly I was like, that’s when I said fuck it, let’s do it. The support of knowing I would be in another household where Long Covid was known and people were used to talking about bodies and needs and slowness, it felt like, it felt comfortable and I felt confident. It was like a whirlwind week of weirdness, trying to be a professional, running on adrenalin and feeling the crash afterwards. Trying to manage snacks and water and salt intake, medication, temperature, not standing up for too long and all that shit. It was my first practice and it went fairly well. I came home and felt very relieved to be home. Then I think I started to feel like, maybe I can leave my cell a bit more. Maybe I can go to town for an eye test. I’ll go and get some new glasses. I’ll get the bus on my own, very exciting. Then more recently I’ve been able to go for dinner with a friend and come home, it is all feeling like the world is opening up again, and very- it’s not linear, it’s hard. I’ve had to build up muscle strength to be able to do things again and see how long I can walk for. I’m still having crashes and confusion and brain fog and all that good stuff, muscle pain every so often. I think that London trip was actually really integral in me learning how to ask for help. It’s weird, it’s like… so I’ve been to London twice this year, I went for the Johnny Vegas trip and then I came back down to see you because we had some important secret meetings with publishers for a secret book that we are definitely not writing. Both times, I feel like I’m putting myself into situations where I’m like, Gabrielle, you need to just speak up. You need to channel the confidence that you used to have and you need to just ask for help. And it not be, not that it’s embarrassing, I don’t want to inconvenience people. That’s my trouble with it. Also because it is like an illness that is inside of me and affects my heart and my brain and my blood and all that stuff, I’m worried that if I ask for help and I look “normal” then someone isn’t going to want to give me the help because they’re not going to think that I’m sick or that I need anything. So having to overcome that, which feels like a weirdly privileged disability problem to have, because some people have visible disabilities and get more stick for that. That’s been weird, like, but then so good when I do ask for help and I get it and my life is made more comfortable because of it. It’s not like I’m getting any bonus treatment from the world, it’s like just making up for the shit that I’ve lost or that I have to deal with every day now. The last time I came to London it was so rough getting the train there, getting out of Euston and getting to the place I was staying in. I was like, fuck, it really took it out of me. I was sort of dreading the journey home. It was during a heatwave and Euston… I looked on twitter before I came and it was full of people, every inch of the station was like, people stood up. I thought, I’m going to have to stand up with those people and I’m going to die. I’m going to die in Euston. I’m going to be on BBC News, 28 year old woman dies waiting for a train in Euston.
ZM - That’s, don’t! That’s not funny!
GDLP - It is a bit funny.
ZM - For context, it was that 40 degree heatwave week, wasn’t it? When they stopped the trains.
GDLP - It was so bad.
ZM - The trains stopped because the rails were warping on the tracks.
GDLP - It’s so dramatic of them, the rails. I was dreading the journey home and then I remembered - there’s a mobility assistance thing in Euston station, I’ve walked past it like a million times. I’m just going to go and ask them. I went in and said, can I get on the buggy to the train? I can’t stand up and wait. Even if they said no I would have just sat there and waited. I was so nervous about the competition to get a place on the train, because I had an open return and I didn’t have a booked seat. The guy didn’t ask any questions, he was liken yeah, what train do you want to get on. Then he said, we get the platform number before everyone else. So if you want to just wait there, someone will come and collect you and someone came, someone took my bags off me, put me on a buggy and then drove me past all this crowd and I was the first person on the train. I was with a woman who was blind and someone else, I didn’t know what their disability was or mobility needs. All three of us were just sat there having a chat and I just thought like, oh man! First of all happy for me that I did it but also happy that service was there, and also thinking, where else are services like that, that I should be taking up the offer? Because it was such a relief, yeah. So weird. Also, I notice more now when the help isn’t there. Where is inaccessible? For example - you go the pharmacy to get your betablockers and there’s a massive queue of people, two chairs, and they’re taken by people who I assume also need them. In that situation, is it a social thing or a way to say, I can’t queue for long, can I go to the front? Or why are there not more chairs? Like at the post office. Basically I can’t queue any more and it’s stressing me out - Tesco, all of these random little places. Like I’m trying to re-enter society and I keep thinking, if I get caught in a queue, not that I’m going to die, but it’s going to stress me the fuck out. The longer I stand up for, the faster my heart rate gets, the hotter I get, the more breathless I get. Then when I get home the more fucked I’m going to be, because I’ve gone through that, even with betablockers. My resting heart rate before going on medication was 92 going up to 130-odd. My resting heart rate now is 60 but it still jumps the 30 every time I do stuff. It’s not that the medication I’m on reduces the jump, in any way, it just makes the starting line a lot lower. Which doesn’t sound ideal, I wish that the jump didn’t happen. But these are the things I think about now on a daily basis and it really ties me in knots sometimes.
ZM - I have a question. There are many things that I think are crazy about this. I don’t know, I know this has spun you… I’m using the word recovery really tentatively, but how do you feel about “recovery”?
GDLP - Yeah… I took Coco to the vets this week and there was someone I knew there and they looked at me and were like, have you still got Long Covid? And I was like, yeah. I said, it has given me a heart condition. I just say heart condition otherwise I would have to send people this hour-long podcast to explain what it is. They said is it temporary or are you going to have that forever? And I was like, I don’t know! They just looked really, like, oh god, this person is marked. Do you know what I mean?
ZM - Yeah yeah, that feels like a hectic thing to say to people.
GDLP - Yeah, it feels like I’ve gone in at the deep end.
ZM - Yeah but also like, who cares?
GDLP - I know, I know. It’s just not casual for like, the vet’s waiting room, you know what I mean? Part of me is excited for the change in what I’m able to do compared to last year. This time last year I thought like, that was it, for my life. I live in this house now, I’m hidden away from society. I’m going to write things and try not to go any madder than I have done, holding on for dear life. I never thought I’d get to go to London. I couldn’t see past it. All of this sounds like I’m being melodramatic but if you had seen and felt the way I looked and felt last year you’d be like, fair enough. Maybe she won’t get to London again. Maybe she will never get to travel or see friends in a way that doesn’t feel horrifically exhausting. I really feel grateful that I can enjoy things again and go places. I feel like I know what I’ve got to do now, I know what I’ve been tasked with. It’s just like, I’m not getting my hopes up about a full recovery. I don’t think that’s a bad thing to say. I saw a tweet the other day, someone called Natalya Hodgens, who said: “last year when I started openly identifying as disabled, a friend said to me, so what, that’s it then? You’re just going to stop trying to get better? And let me tell you, I have never felt so much rage towards another person”. This person has M.E. The reply says, “life with M.E. has taught me about quality of life and I’ll never stop trying to improve this, but when I think about all the time, energy and money spent on practitioners and treatment, I want to cry. Seeking a cure at all cost is no way to live. Finding balance is not giving up. Disability has only ever delivered positives to me - community, opportunities, identity, and friends. Compared to sickness, which strips away so much of who I am. But from my friends point of view it was much better for me to be mysteriously sick with potential to recover than to just be disabled”. That feels kind of close to how I feel, I don’t think disability has only delivered positives because I’m sat here right now and my legs hurt and my back is hurting because two days ago I went to a restaurant and the chairs were wooden and I’ve been in pain since then. We hate this, we hate this. There’s something about that switch, like, last year, in my mysterious illness phase, people were sending me links all the time. Especially people who follow The White Pube were sending me links to like, oh you should try this diet, apparently anti-histamines change everything. Apparently anti-histamines fuck you up. Apparently this is the special thing you have to do if you howl at the moon. It like riled me up so much.
ZM - Ginger tea!
GDLP - As if I had any energy to try any of this shit, I was dead. Now that I’ve got a thing, all those messages have stopped. The only messages I get now are from people who also have POTS who are like, oh my god, I’ve got it as well, or I had Covid and now I’ve been diagnosed… we had one message from someone that said because of the content we put out, where we described what POTS was, they were able to go to their doctor and they have now got a diagnosis because we helped inform them. So god knows what a podcast episode that is the full explanation is going to do. I’m not banking on getting better but I now feel more motivated to try and enjoy the new limits, which is nice.
ZM - That’s lovely, I really like that.
GDLP - It’s shit that there are any limits, I didn’t used to have any limits, but now I’m like, OK. This is so cheesy but do you know the video of Drew Barrymore in the rain? It went viral… she’s like, ahh! Rain pouring all over her and she’s so happy like a little kid.
ZM - Yes…
GDLP - The other day I was walking outside with a short sleeved t-shirt on and it started raining and I felt the same way. I know a lot of people are going to feel this way after a shitty heatwave death Summer, but I felt it because I hadn’t felt rain in so long.
ZM - That’s a really good point!
GDLP - I forgot what weather felt like. I forgot that it sort of like, tickles. I was like, oh my god, the rain’s tickling. I was listening to music and me headphones were getting wet and I was like, fuck it! I’m just going to really enjoy this music.
ZM - You were having a Natasha Bedingfield moment - (sings) “Feel the rain on your skin, no one else can feel it for you…”
GDLP - Oh my God. That, but I look like Drew Barrymore, in the street.
ZM - That’s really beautiful.
GDLP - Those things are really nice and it feels like there’s more of a handbook to give other people. For example, when I came to London last I stayed with Zarina’s mum and sister, and you asked me, what food should mum get in for you? You asked me at a time when I couldn’t think so I just sent you a list, a listicle, best snacks for POTS people. It was like, popcorn and olives and I don’t know what else was on the list but your mum just went and got all of the things on the list. I’m so glad that I can do that now, because if you’d asked me that last year, what do you want us to get in? I’d have been like, toast? I don’t know, toast? I was so depressed. I don’t think I’m depressed anymore. That’s a big thing. I think like, life just feels different. It doesn’t feel great but it feels a lot better. Living in this like, space of - OK, I’m going to try and do more, I’m going to see how far I can walk now. That’s the level that I’m at - I’m not like, OK, what’s the cure for POTS. I’m just thinking, can I walk to Tesco and back or will I have to get a taxi on the way back? I’ll try it, let’s see. Those are the little things I’m thinking about. A lot of POTS advice is actually to do not necessarily exercise, because POTS also comes with exercise intolerance - if you’re over-exerting yourself, your heart rate is going crazy, and then you have to enjoy a big crash afterwards. You have to be really careful about what you do. But a lot of advice is that you should try and strengthen your legs because that will help pump blood around your body and stop it getting pooled in your legs as much. I was really excited to do that because I used to fucking love exercise. Just as I was getting into the swing of it the weather got too hot, so every day I was trying to do it I was couldn’t do anything else that day. I would do half an hour of little things in the garden to try and strengthen my legs and then I literally couldn’t do anything else and it just felt like, again, why is this a thing I have to go through? So I’m waiting for the weather to get slightly cooler so I can try those little things again and see how I feel.
ZM - Do you know what you should be able to do? You know how like, birds migrate for the winter?
GDLP - Yeah… I cannot wait for Winter.
ZM - You should be able to migrate for Summer. You should be able to fuck off.
GDLP - I should be able to migrate for the Summer but I also should get a free gym membership so I can do that somewhere air-conditioned, I should get compensation from Boris Johnson’s shitty government for getting Covid in the first place, that has then become, I won the lottery, I got a chronic illness off the back of it.
ZM - There should be a big fat grand for every time you’ve thought, fuck this. If you add up the amount of times you’ve thought fuck my life, you should get a grand of that.
GDLP - I can’t believe I have to pay for prescriptions. That’s another thing. I should not be taxed for being ill!
ZM - I hate this country.
GDLP - Maybe a good way to end this is to mention one thing that the Government has done for me, after the healthcare system failed for a year and then one doctor knew what the fuck was going on. In 2021 when I was not with it, I applied for PIP, which is Personal Independence Payments, Government support for people who are too sick to look after themselves basically. I wasn’t successful with the PIP application but the thing is, no one is, on the first one. I just didn’t have the mental capacity to re-apply, I took it as such a fuck you from everything that had gone on last year, to be like, you’re not sick enough so you don’t get a little tiny bit of money that wouldn’t even matter much anyway because of how small it is. I got really upset about it and then a friend messaged and said, OK, if you didn’t get PIP, you should apply for Access To Work instead. That’s another scheme from the Government that is essentially like, OK, sick and disabled people exist in this country and what we care about is the economy, so we want those sick and disabled people to go the fuck to work and we’re going to make sure they get there. That’s how I see it. So for example, if you have a disability and you need taxis to get to work because the bus isn’t viable, you can apply for a taxi budget. If you need special equipment at your workplace, you can apply to pay for that. I read up on Access To Work, I think it was maybe in January of this year, I wrote this hasty application thinking, this isn’t going to go anywhere. Nothing has gone anywhere. My diagnosis, my PIP application. I’d lost all faith in everything. Fuck it. On the application I wrote that I need an air conditioner. I need my house to be air conditioned!
ZM - You DO!
GDLP - Because I was so worried about the upcoming Summer based on what the last Summer had done to me. I put the application in, forgot about it. It’s just an online form, easy, done. Then, about one month ago, I got an email from someone from the DWP who said hello, I am the caseworker on your application, can we have a phonecall? I was like ooh, interesting. She asked me what I needed to work. She asked me about my job and she also said, within that, what can you not necessarily do on your own anymore? What adaptions could you make to make your work easier? I’ve got an office but I’ve not been there because you have to get the bus to get there. It’s just a nightmare and by the time I’ve used my energy on the bus to get to the office, I’m fucked and I can’t do any work. Then the bus back, it’s just, I can’t go the next day, but I can’t afford taxis because a taxi there and back is seven quid each way. I said, taxis to an office would be great. I would like a better chair to work at, because of the dysautonomia I’m really weirdly sensitive to pain. That means like, the example I said a bit ago, I sat on a hard wooden chair and I’ve been in pain for two days. It’s just bullshit like that. So I said yeah, a nice chair, not like, just because I want a nice chair - because I want to be able to write for long periods of time and a chair might help. Because of POTS and blood pooling and stuff like that, she suggested a table that goes up and down, you know the electric sit-stand tables. I said, I don’t know if that’s a really good idea or a really bad one because for me, sitting and standing is like, it’s not the one. Me standing for a long time is not the one. But also, me sitting for a long time also isn’t the one so I don’t know which is the one. I would like to try it. Then the big thing I spoke to her about on the phone is a support worker. Zarina knows this because we work together. My ability to comprehend e-mails is tenuous. Here’s an embarrassing example. This podcast goes out the day after the event happens, so it’s fine.
ZM - It will have been fine. It was fine.
GDLP - It was fine hopefully. I got an email from an arts organisation in Birmingham saying hi, would you like to come and do this panel, we’re doing a panel about art and cities and it’s going to be good and cool, would you like to do it? I thought - do you know what, I’ve not done anything independent like that and maybe it is a good little experiment, again, to test my limits and see if it is something that I can comfortably get through enough to enjoy. It’s a job, so I get to earn a bit of money. I said to them, is it possible for me to come up the day before? Would they pay for a hotel so I can come up, rest, then get a taxi to the venue the next day, and hopefully that means I’ll be on my best form rather than coming up on the day and being all whacked out and in pain because of it. They were amazing they were like, yeah, we’ll do that, anything else you need? Oh, this is so bad… I said, is there any chance I can see the questions for the panel? Because in the past I would have been able to think on my feet, say relatively clever things, and be a person on a panel. Both of the people I was e-mailing were like, no? I was a bit confused because they had been so accommodating up until that point. I was like, what? Then they said would you like to jump on a phone call and I said yes. On the phone call, this absolutely lovely person was like, OK, I can run you through how the event is going to go, if you want. Someone from the museum is going to introduce the event and then they’ll hand over to you to chair, and I was like, they’ll hand over to me? To chair? Errr…. I just had to pretend on the phone call that I knew what the fuck was going on, but I think she knew that I didn’t know what the fuck was going on, I thought I was on the panel as a guest that was going to be interviewed and that’s why I thought it was going to be easy. I very quickly grabbed the e-mail back up and it literally says, we would like to invite you to chair a panel talk. I cannot be trusted. I feel like I have gone rogue. This person has now realised that the chair of the event didn’t realise they were chairing. That’s why they couldn’t fucking give me the questions. I’m asking the questions! Imagine… ahhh! So bad.
ZM - It’s not that bad. You missed an e-mail.
GDLP - It’s not that bad. It’s bad in the sense that it’s a good example of how my brain is functioning at the moment. It’s just that there’s a stinger, that wasn’t even the worst of it. At the end of the phone call, I said, well thank you so much for everything, I’ll see you next week, oh no I won’t see you next week will I? It’s not next week. I’ll see you soon in Birmingham. Then I put the phone down and I was like, wait. I got my calendar up and it is next week. So this person has not only found out that the chair of the event didn’t know they were the chair of the event, but also they think it’s not next week, and it is!
ZM - You can just pretend that was a really funny joke. I was just messing. Turn up in Birmingham next week - I knew!
GDLP - It’s like something happened when I got Covid and got POTS, the numbers and the details and the logistics and the organisation, all the stuff that used to be so seamless. That trick has gone and I genuinely need someone to look over my homework. I was explaining that to the Access To Work caseworker on the phone and she fully got it, she said there’s a form you can fill in, and tell us what you would need a support worker to do and how many hours you would need them per week. With the incredible help of Abby Palmer who spoke me through every single phase of this application, I literally couldn’t have done it without her, I was able to fill in what I would need from a support worker. I mention, in the same way that its good for us to share funding applications with each other and all of the difficult stuff in order to access money or opportunities, that kind of file-sharing is radical and cool and nice. When it comes to access requirements I think a lot of imagination is needed. Sometimes I know what the problems are but I don’t know what support would fix them, so being able to see someone else’s application and what they need is so helpful, to think, OK what would my equivalent of that be? Huge. So I filled in a support worker form, I also got quotes for taxis for the journey from my house to the office. I’ve also had an assessment with them about my workplace, which is quite different because I’m self-employed so they were just asking about my little desk at home. Then I got a call off them saying yep, we’ve granted your Access to Work application. It was so like, unexpected, because I didn’t think anything could go right. I just didn’t register what she’d said. It means now I can pay someone 8 hours a week via the DWP. So I think I have to invoice them for the money and then the person who I employ as a support worker invoices me. Then they’re also providing me with all of this office equipment including the sit-stand desk and a fancy chair and a leg rest and some text to speech software and speech to text. All of the stuff that I think, this is going to be very helpful. And I’ve got a taxi budget as well. Which, ah man, full disclosure - they ask me for three taxi quotes, so I called up all these different operators and most of them were £6-7. One of them was £5.90-£7. I wrote those three quotes, so they’ve given me the £5.90 quote, as in, the lowest one. How it works is, you have to take the cost of the bus, which is £2.30 off it. So whatever £5.90 minus £2.30 is, they will give me that amount per taxi journey. I tested it this week and I got a taxi there and it was £7. I don’t want to sniff too much at it because it is a little bit of money but at the same time…
ZM - D’you know what? No. You can sniff at that, because that’s just so - can you imagine if you had a friend like that?
GDLP - So tight.
ZM - So stingy, I can’t be dealing with that. You said this when you introduced Access to Work as an idea, as a thing that you applied for, but it does just sum up a lot about this government. They’re so much more willing to provide little bits of money to help you go to work but not to like, live an independent life. They’re so happy to like, ah yeah we’ll give you the money for the taxi, (whispers) minus what you’ve spent already. It’s two pounds! Two pounds! What the hell, are you fucking crazy. Imagine if you had a friend like that, that was like, can you just send me that £2.70 for the Wagamamas last night… are you mad?
GDLP - It happened with the support workers as well, I had to give them three quotes for support workers and they’ve gone with the lowest one. I wish I’d have known that. It’s too late, whatever. I’m saying it now, at the very end of a podcast, so that anyone listening who is thinking the same knows that now as well. I am about to get that all kicked into gear and I’m grateful for it. It’s interesting. Like you say, none of that money goes to me. It’s going to a support worker, on the equipment, to the taxi ranks, but none of it is to help me, none of it is a consolation prize to getting disabled because of a shitty government. So yeah, I think that’s sort of like, that’s the full update. I still hate shit days, shit hours, my brain is so out of it, my sleeping pattern is upside down, weird hours. Cold hands, I’m having issues now when I sit down to write my fingers get icy cold, and the tip of my nose. Good update, good to know shit’s better and I’m doing more stuff. But also, heart condition, not so good… and that’s it. So, hopefully you know what POTS is now, dear listener. Yeah and if you have listened to the end of this I really appreciate it. I used to listen to little tiny bits or read little bits about disability and sickness before I got sick and I think it’s just so important that we all know. Raising awareness about things, even though that’s a cheesy thing to do, could really change the fabric of how we treat each other in society, knowing that so many people have invisible illnesses, knowing that if we are kind and very patient with each other then we can all live a more comfortable, healthy, pain-free life. Ish. And that’s the end of it! If you have enjoyed this episode, please share it, especially if you know any Covid people. Zarina and I make our living via Patreon so if you want to sign up to be a Patreon member and give as little as £1 a month, that would make a big difference. We have lots of listeners, lots of readers, lots of viewers, and if every single one of those gave like £1 a month then I wouldn’t fucking need to do Access to Work, baybee! But I do because not everyone does. I say all that knowing that there’s a cost of living crisis, please do not put yourself out. I just declare those messages for the people who listen who are very rich.
ZM - There are a few of them.
GDLP - Very very rich. There are a few of them and we know who they are.
ZM - We know who you are.
GDLP - Those people should become the patrons, especially on behalf of the people who can’t.
ZM - It’s offsetting and subsidising, so we don’t have to put up a paywall, which we probably wouldn’t do anyway but the threat is still there! In case.
GDLP - The threat. We have a Discord server for anyone who’s either become a regular Patreon support or Ko-fi supporter or done a one-off donation on Ko-fi or Paypal. All the links to that will be in the show notes.
ZM - And if you want to go to Patreon and you don’t want to look at the show notes, it’s patreon.com/thewhitepube.
GDLP - Yeah. Cool. OK. This has been a hefty episode. The transcription for this is on The White Pube as well if you want to go back and find any information, send us a message or an email if you’ve got any questions or you think we left anything out, and we’ll see you on the next episode of the podcast. Byee!
ZM - Byeeee!