48 - Saskia Mulder - Long Covid & a visit to South Africa

Episode 48 of the Long Covid Podcast is a chat with Saskia Mulder, a nurse living with Long Covid. We chat through some of her experiences, some of the things that have helped her in her journey and about mental health (& the importance of seeking help).

We also chat a load about her trip to South Africa to see "Doctor Jaco", a load about microclots & the treatment that followed.

Saskia is completely honest about her experiences, so a really useful listen for anyone.

Blog - "Living with Long Covid, the invisible illness
Blog - "Is there life after Long Covid?"

Physio – Belfast Backcare
Viola Sampson - Microbiome
BBC interview with Dr Asad Khan & Dr Beate Jaeger

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(music credit - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  0:00  
Hello and welcome to this episode of the long COVID Podcast. I am really happy to introduce my guest Saskia Mulder, this morning who has joined me today. So Saskia has long COVID, Like so many of us and has recently embarked on treatments overseas. So we're going to talk a little bit about that today. So welcome to the podcast.

Saskia Mulder  0:20  
Hi, thanks for having me.

Jackie Baxter  0:23  
So thank you so much for joining me today. Would you mind introducing yourself a little bit and sort of I guess what you did before COVID? 

Saskia Mulder  0:32  
That's so far back now!

Jackie Baxter  0:35  
I know it's hard to remember isn't it.

Saskia Mulder  0:36  
It's hard to remember that one. So yeah, I am a nurse. I'm a psych nurse. My background is in psychiatry. Before I became unwell, I worked in a hospital but also have done a lot of time in community nursing as well. And I was the deputy manager in an over 65 acute admissions ward. It was primarily a ward for people with mental illness. But because of the age group, obviously of the patients, there was a lot of medical issues with people. So in our ward, it was really like a little mini medical wards, With psychiatry. And we'd had lots of extra additional training to manage patients in that ward. And we regularly would have had people developing sepsis, heart attack, strokes, and then we would have had the mental illness side as well. So I worked there for a couple of years, I really, really liked that post. 

I was also qualified in several alternative therapies. So I'm a Reiki Master. I do a bit of kinesiology and aromatherapy. My life was that I was working full time and more. I was seeing people from home, plus my alternative practice. And I had just started that, that was just started up and running, completed my training. And then COVID hit and our ward was the first ward to get in the hospital because of their age bracket again. It was the very first wave that came over from Wuhan. We were completely ill prepared as you can imagine, and our PPE consisted of a surgical mask, latex gloves to the wrist and aprons that were thinner than bin bags. 

You know, it was a bit strange because in Italy and we're seeing everybody wrapped up like almost like a NASA spacesuits. And we were in this flimsy gear that we knew it's completely not enough. And at that time the staffing was really bad on the ward. And we'd lots of agency staff, who many didn't want to go into the people with covid, a lot of fear at that time on the ward. and myself and a handful of other staff that were regulars, they ended up doing all the COVID care, in and out three or four times a day, whatever, whatever they need it. And of course, I was out in a week. I thought to myself, I will be back in a couple of weeks. And I'm still out, 27 months later, I still haven't returned to that world.

Jackie Baxter  3:12  
I mean, I think we were saying just before we came on here, it's quite hard to remember back to that time, isn't it? You know, we'd seen China, we'd seen Italy and then it hit us. And for some reason, I don't know. It was like we were naive. And we didn't really think oh, you know, we'll be fine. We'll be fine. 

Saskia Mulder  3:31  
Yeah, 

Jackie Baxter  3:31  
obviously we weren't. But yeah, it's obviously a sort of a full on job that you were doing before you got ill.

Saskia Mulder  3:39  
Yeah. And if I look back now, I think I probably was in a bit of a burnout for a few years before I became unwell. When you start to piece your life together when you have a lot of time to reflect. And you listen to Gez's videos, you know those wonderful YouTube videos about well, we all know the mind and the body is connected anyway. When I look back, I probably had lots of things that like sort of slight Mast Cell issues were going on, but I thought it was just that I was intolerant to the air with trees, the pollen. You know, I was constantly tired. Although I would have been a big walker, and done yoga, And you know, I had a busy life. I never felt fully refreshed, but I didn't really piece it together until I became unwell. And I think I was pushing myself too much, you know,

Jackie Baxter  4:29  
yeah. And it seems like there are so many people exactly as you just described that have ended up with long COVID 

Saskia Mulder  4:34  
Yeah

Jackie Baxter  4:35  
I've certainly had some of the same reflections and we just push through, don't we? Because we can, why shouldn't we? we're young, we're healthy. You know what, why shouldn't we just keep pushing? That's what you do. Except it shouldn't be

Saskia Mulder  4:47  
totally I think if it's your character - my character or is to get up and get on with life, no matter what. It's the way my mother was. That's the way I was brought up and I think you just do it, don't you? You're just either that type of a person or you're not. And I think this illness has enabled me to reflect that that was not the way I want to be going forward, whatever is going to happen with my health. It's certainly not the way I'll be. If I ever get back to that life. 

Jackie Baxter  5:15  
Yeah, no, absolutely. So you, you got ill very quickly. And I guess, like, a lot of us thought, you know, oh, well, you know, I'll be fine in a few weeks. Like a lot of people, did you start to get better and then get worse again? Or how did that progress?

Saskia Mulder  5:33  
So what happened with me was I went out with the typical symptoms of actually on the ward, and my throat was raw, I was feeling extra fatigued. And I sort of put it down to that I'd been doing extra shifts because of, you know, because no staff. And I remember my chest feeling tight, and I have never had respiratory problems in my life, ever. And I remember going home and steaming and myself with apple cider vinegar, and my sore throst was fine the next day, but I couldn't breathe. I woke up and I remember ringing the manager, and I said, I can't really breathe. And she said, I can hear that. I'm still not really thinking. 

And then it kind of progressed from day 8 or day 9, my breathing was really quite bad. And remember ringing and the doctor, my GP and saying, Look, I don't want to go to hospital, but I can't breathe. I remember her saying to me, we'll get you an ambulance, and we'll take it and I said absolutely not. Am I getting into an ambulance? I'm not having my neighbors Look at me, you know, I got a lift to the hospital. At that time, the protocol was unless you were dying, you weren't getting admitted. If you remember way back then that was you know, so they done all my obs and my BP was sky high and my temperature actually was really, really low. And I remember them asking me have you taken paracetamol because it was so low. And I said no, I haven't. Obviously, my breathing was quite labored. 

And they just sent me home and said, If you can't hold your breath for more than four seconds, ring 999. And that was it. I went back home and I rode it out, I rode the wave. I started to turn a corner then after about three weeks. I remember going out walking because that's what you done. And I walked five miles. And then the next day I went out again and walked another five miles and I remember thinking I shouldn't have done that. It was too much for me. And I was standing in Tesco's and the cough came back. I went through  what felt like a relapse of the first time I became unwell with COVID. So this time, my temperature spiked high, sore throat, breathing, I just felt horrendous. I felt like inside my head when I turned my head it was like on a merry-go-round. And my chest was really, really sore. And I went then I was seen there at the COVID Center, signed up my chest I think the doctor put me on antibiotics at that stage. And I came home. 

And then three days later I was back in the GPs getting put on a stronger antibiotics because they thought at that stage it had turned into pneumonia. Really, from that moment on, every month, I got worse, not better. I remember my GP saying to me, every month you'll start to get better. Just take it really slow and don't push yourself and in fairness, I had one particular GP he had worked with ME patients before and she's she's been around a long time and she gave me very good advice. And I remember her saying that to me, but every month I was getting worse. 

But of course I didn't know anybody else apart from one colleague. He went out the same time as me. And thank goodness I had him to bounce off because nobody else I knew had COVID. Long COVID wasn't a thing. I mean, I didn't get my Long COVID diagnosis till nine months because it wasn't back then, you know? And, and every month just got worse. I took post-viral myalgia, post viral pleurisy, I took costochondritis. I had infections, sinus infections. I was tachycardic, I had horrendous horrendous dysautonomia. But, of course, we didn't know what dysautonomia was then, we didn't even know how to articulate it. The nausea was overwhelming for months and months and months. I just lived sofa to bed really.

It was just a horrendous time. And yeah, it just kept getting worse and worse. And it didn't really get ever better, it was just relentless. It was a new symptom every month. It wasn't that I was getting better every month, it was just every month was something new. And that was really really tough mentally to cope with. 

Funnily enough I had a CT scan and they injected dye into CT scan at about eight months. I remember after that CT scan, my chest went into overdrive. It was stinging and burning went to the next level in my lungs. And I remember asking people to think that could have been the dye? And everybody was like, oh, no, no, I've never heard of that before. And I remember reading, because as you know, we become our own investigators, we have to from our sick bed. I remember reading that paper with Mast Cell issues can't take things like anesthetics and dyes and things. I thought this definitely has happened to me, but I didn't really know what Mast cell issues were, and it was all joining the dots. 

And actually, I had to go and see a private respiratory consultant at that time, because my chest was horrendous. I couldn't lie down in the bed, I had to prop myself up. I had to wedge my mouth open at night, so I could get enough air in. because I couldn't, you know, that intake of air - I couldn't get enough in. And I went to see him and he gave me steroids, because the GPs wouldn't give me steroids, because everything was coming back clear, as we know, happens in long COVID. 

And it was at that time, then he gave me a diagnosis of long Covid. And it started to become a bit of a thing, then, then I started to turn a bit of a corner, around 10 months mark. Of course, what did I do then, I went out walking  in the forest. And it was a really bitter freezing cold day, do you know the tight or it takes your breath away. And I remember taking my inhaler, round it a couple of times that should have been a sign to get back in the car to go home. And I relapsed, horrendously after that - and I'm talking about a four month relapse, where everything just became really, really horrible and dark. And I had one infection after sinus infections. And you know, I can hardly stand. And every day was relentless - every day, or it was like, how am I gonna get through this day, it was just illness and symptoms, and pain. and nothing that you took. 

I have had horrendous headaches every day since March. And at that time, there were utterly horrendous, that could of lasted for 17 days straight. And nothing took the pain away. And just every day was just horrible. It was torturous. 

And it was in and around from the year mark to the 15 month mark - 16 month mark, my mental health really started to dip. And I started to have thoughts that I didn't want to be here anymore. And I talked about this in my first blog that I wrote, I decided that if this was my life, that I just didn't want to be here anymore. And I started to formulate a plan of what way I was going to effectively end my life. And I started to get safety and comfort from that plan and relief - suppose a sense of feeling that I was in control again of my life, because I haven't been since March.

I know from my background in psychiatry, that that's very dangerous that thought process because I've often nursed patients who have been very suicidal and very unwell and then you see a bit of change in them. And they'll be doing the laundry while a bit brighter. You think a little bit of a shift and their mental health. But actually, they've made a decision that they're they're going to die by suicide, and they get sort of, you know, a bit of a reprieve. 

And I knew that that's the headspace that I was in - that it was dangerous to be getting comfort from these thoughts. So I had just come out of a two week relapse at that time. And my friends, we had decided to meet for coffee, two of my dear friends who are also Psych nurses. And it was one of those moments where you know, if somebody asks you how are you gonna burst into tears? And I sat down and my friend knew by just looking at me and she said, what's wrong? And I just burst into tears. And I said to her, I cannot do this anymore. I don't want to be here. I don't want to live. and they were giving me a bit of a you know, a stern talking to - how come you haven't told us that? You need to ring the doctor. I remember saying that just Well they all tell me it's in my hand anyway, and I don't want to give them the pleasure of saying - didn't we tell you it was in your head. You know? Because there was a lot of that, you know, neurotic woman feeling too when we went to speak to doctors about you know, she's. you know, yourself - They didn't believe a lot of what we were saying. And it's very hard to express and articulate how devastating this illness is. Because I'm talking I'm expressing myself now. People just don't understand the preparation we have to do before we come on here. And then the relapse after here. So it's very hard for people in general. 

But I remember my friends saying who cares what they think of you  lift the phone, you are not well, the thoughts inside your head are dangerous, you need to get help. And around 16 - 17 months then in I did - I rang down after I spoke to them that day and I burst into tears with this particular GP had been very good to me and still is - the only one really. I said you may put me on  SSRI, I'm not good here. And that really, really helped. And I suppose if I could say anything today to people that are listening to this and are struggling, and they're worried about the stigma of mental health, and they're worried about GPs, because they think it's in their head anyway, I would say it was the best decision I made at that time in my life was to go on that medication, because the thoughts that I were having were so horrendous and so intrusive, that they were taking over me. Within a week, those thoughts have stopped on the medication. It's only a very mild SSRI. But it just stopped that dead in its tracks - and they've never come back. All right, my illness is so horrendous, and I'm still struggling. Of course, I'm not as bad now as it was then. But it's enabled me to cope with the illness better. And I think I would recommend anybody. And it's quite ironic that a psych nurse was worried about the stigma of going down to get medication when I would be telling patients. 

Jackie Baxter  16:04  
Yeah, it's so funny, isn't it? Well, not funny at all. But you know what I mean, you know, it's very easy to say things to other people, but seeing it in yourself is so much harder. Yeah, I've found the same with all sorts of things. You know, I give advice to people all the time, and I say, Oh, well, you know, you should do this. But then when I'm in the depths of a relapse, and I'm feeling terrible, I forget to do all of those things.

Saskia Mulder  16:24  
And I think as a health professional, I've talked to many other health professionals, we're not the best patients. And we don't like to be the patients and we don't like to be the one saying - I'm not well, you know,  I find that very difficult to take my hat off of being a nurse to - i'm now the patient, I find that extremely difficult. So for me, that was a big part of why I couldn't admit the thoughts that I was having. So that's taken me up to now month 27.

Jackie Baxter  16:53  
I think it's a huge reminder about you know, the symptoms aren't in our heads, the symptoms are real, but there's so much connected with mental health isn't there because, you know, when you're ill for a very long time, it's incredibly tough, and everybody's got their own struggles, depending on their own situations. So definitely, it's a huge, a huge factor, I think, 

Saskia Mulder  17:15  
I think it's only obvious but if you've been so profoundly unwell as we have, I mean, life changingly unwell, where you can't leave your home, and you can't do anything that you could do before that it's going to impact on your mood. And I think we need to be okay with saying that - and I wasn't obviously for a very long time. And now I am completely fine, because I wrote about it on my blog. And I think, you know, there's so many people I see on Twitter, you know, there's a particular gentleman I follow. There's so many people that have died by suicide with long Covid. It's happening, it's a very real thing, people are ending their lives because they can't cope with the pain anymore. And that in itself is just utterly tragic, Nevermind the illness. So I think it's something that definitely needs to be recognized and accepted. That we don't feel shame that we're really mentally struggling. And that's okay. Because this is a big massive deal. But you know, what we're going through?

Jackie Baxter  18:07  
Yes, exactly. On top of the whole pandemic, and everything else, you know, I think there are lots of people that don't have long COVID that have found the last couple of years tough. So when you add, add everything else on top, it's, it's huge. I will absolutely pop a link to your blog in the show notes. So people can go and have a read of that if they're interested. 

You mentioned you paid privately to see a couple of specialists. So the health services near you, not particularly helpful? 

Saskia Mulder  18:37  
Well, I had that one GP who was very supportive, and you know, at the start got me X rays and scans and was very good with me on the phone. If I would have run down and said, You know, I just think I need my stats checked in on and my breathing is getting worse - she wasvery good. I knew people, In particular, my colleague who lived an hour from me in Belfast, the GP just completely refused to see him and was very dismissive on the phone. So I just felt incredibly lucky at that time. So yeah, I was seeing then for my chest X rays, and my CT scans, and everything was coming back clear, as we know. And I was starting to think, you know, what is wrong with me?

It was actually my GP who had rang me then about six months and said, there's a charity, northern Ireland Chest Heart and Stroke. They're doing a long COVID rehab program. And I said, But don't you need to have been in hospital to be, you know, accepted to that. And she said, No, you don't - ring them. So I rang them, they rang me back. And that was the first real lifeline support that I have had, and indeed the people on the course we met on Zoom had had and in fact, the first day we met everybody broke down in tears because we have been for 6, 7, 8 months inside the walls of our own home. Not knowing anybody else like us, not being able to leave our home. We're just in a mess. 

That group was based off their previous rehabs that they had done with people who had had strokes and heart attacks and things like that. But we did realize then halfway through that course, that was going to have to be altered. Because, you know, it was it was not only just about exercise, it was also about your mental health and food. And it was about being kind to yourself. And if you couldn't do something that day, well, that was fine. Don't push yourself. I remember that one of the ladies who ran it said to me, if you go for a five minute walk and you come back, and then 10 minutes later, you don't feel better, you feel worse, you don't go for a walk. So there's lots of really good advice being given even at that time. And we really didn't know that we shouldn't be going out walking, really at all if you're that weak that you can't stand up and you're feeling dizzy. 

And then again, we didn't know what dysautonomia was, so I pushed through. But we very quickly realized halfway through that, that I actually couldn't quite walk anymore because it had been starting to relapse me. It was making me unwell. So my focus then was on meditations daily, which I am a big lover of and have done for years, Anyway - meditation and breath work has been the only things that have kept me sane and got me through times when I couldn't get out of bed, was just doing a meditation to shift my mind and take me to somewhere different than my reality. So they were absolutely fantastic. 

And I remember did a news interview at the time about it. And lots of other people went on the second course that they offered, and I'm friendly with those people now to this day. So you've met loads of people, like you said earlier before this, that you would never have met, so that we done that. And then I got offered to do another rehab program at about nine months with a physio here in Ireland, he had taken a particular interest in long haulers. He was lovely - Belfast Back Care - I'll do a wee plug for him, they were really sympathetic and said to us, if you can't do something, or it's too much, just tell us and we stop, which is again, suppose for that time was really cutting edge because I still hear people now and we have courses being told that they must increase their exercise and they must push through and all this absolute nonsense that we know now so dangerous. We have started the first day doing the how many times can you sit from the chair and stand in 30 seconds up and down. And we all just said to him this after it-  We're not doing that this -we're half dead down here. 

And he really rethought the program. And what we ended up doing for that rehab for six weeks was laying on the floor on our backs doing the most gentlest of pilate movements with our legs and arms maybe for about five minutes max. And then the rest of the time spent doing meditation and breath work. And it's actually for six weeks, I was really loving it. And I really was sorry that that was over. Because I really felt that I could have gone to that every week forever. You know, he just got us. He tested our vital signs before and after each activity. And if they shot up it was like, Right, no, we're not doing it. I mean, he was really - at that time, he was really thinking above and beyond because I had been to other physios private and they were trying to get me to do crazy things, it's that typical rehab approach, and it's not to criticize them. It's just they were coming from a rehab perspective. But we now know that that's, that doesn't work for many of us. For the majority of people I know, it's made us a lot worse. 

So after that, I had heard nothing until I was offered the long COVID clinic just about a month ago, so I waited that long to be seen. They said to me it would be patient education on Zoom, and symptom management. And I asked them was there going to be any the exercise involved in this, because I'd obviously been around the block. And I wasn't prepared to do it. He was lovely. He was a really nice guy - didn't really have much of an understanding about the whole micro clotting issue. The vascular side of it. didn't really have much of an understanding that if you do rehab, actually, it makes people a lot worse. He actually was very interested in my story about South Africa, the whole microcloud thing. I give him a lot of people's names to go and Google. He was very receptive. But he admitted to me that really, I could probably teach them how to symptom manage. And there was no point in me going to sit on Zoom and have somebody tell me how to manage my symptoms and to exercise because I told them I just wouldn't be doing it, and that was that.

Jackie Baxter  24:39  
It's like that would have been really helpful like right back at the start but 27 months in it's kind of shutting the door after the horse has bolted isn't it a little bit.

Saskia Mulder  24:47  
Totally. And So inappropriate - if we talk about the long COVID clinics and how they should be a specialist team, that the staff that you speak to still don't know anything about Long Covid. It's in the NICE guidelines. It's in World physio guidelines, there's people shouting about it from the rooftop, I feel like I'm banging my head off the wall. Because how is this information not getting out there? because I know so many people like myself, who are advocating this. But the people that you want to hear don't seem to hear it. We look back at post viral illnesses. It's not a new concept. Because if we look back at ME and those poor people, what they had to go through and being pushed and forced to exercise. It doesn't work. It's never worked. But I think unless there's exposure in this world, you're not really aware of that. 

We agreed in the end that were going to discharge me from the Long Covid clinic, because what were they really offering me, and they were gonna refer me to psychology, because I finally accepted that I do need to speak to somebody because, you know, my life has changed significantly. And I'm really doing this on my own. So I'm waiting on that. Everything outside of that, I paid for privately, I sought myself. And, you know, I've talked about about the Chinese herbs that I've been taking with a lady - that she's actually in London, but it was a project for healthcare workers that they could get free herbs. This was a way back, at the start. And she's fantastic. She's a wealth of knowledge. And it's all about Chinese medicine and looking at the tongue and seeing what's wrong with the whole body. 

Cranial sacral therapy has been another big thing for me, that has helped me regulate my menstrual cycle. I all of a sudden started getting my cycle every two weeks. And that was pretty horrendous on top of being on blood thinners. And hyperbaric oxygen therapy has been a big one, for helping me with lots of symptoms and my breathing, my chest and stuff. But of course, you know, you have to pay for them - a lot of money - and travel, which is extremely sore in the body. And really, that's the input that I've had. Yeah.

Jackie Baxter  27:03  
Yeah, it's tough, isn't it? Because, you know, we think, Oh, well, I'll try that, because someone suggested that. And that sounds like a great idea, because it helped them. But it's a lot of effort to, you know, look it up, work out what you're doing, start putting it into practice, sometimes there's travel involved, or other people or, or money and you know, a lot of us aren't able to work. So there's huge issues, in so many different areas isn't there for all of that.

Saskia Mulder  27:29  
And also, what really was key, I think in starting to get a bit of strength and inner strength was when I went to Viola Sampson who is a microbiome specialist. And I see her as well, every month. I send a stool sample, and she tests to see what essentially was deficient in my gut. And we're kind of always tinkering it. So, you know, that has definitely helped me and I would recommend anybody to sort out they've gut health, and she herself had me for 12 years. So this woman knows what she's talking about. She really gets it and understands. And actually cranial sacral therapy was the thing that she recommended for me, because that was the first thing that started to heal her and her illness. So I definitely think there are lots of other things that you can do to bring on the healing to help the healing. But that's all money. You know, we must acknowledge that as well. Not everybody is in the position to be able to do that. So it's very bad.

Jackie Baxter  28:28  
Yeah, definitely. And you were talking earlier about some of the groups that you've been involved in with the rehab and things and that idea of peer support, you know, learning from other people. Because I mean, I've certainly found, you know, you hear someone talking about something that they've tried and you think, Oh, I'd never thought of that, I'll look into that. And actually, that's where I've got most of my best ideas from is from speaking to other people. It's not actually from the doctors at all

Saskia Mulder  28:55  
No, I mean, their lack of knowledge on post viral illnesses in general. Nevermind Long COVID. They're un-interested in getting to know anything, I find - my experiences with the majority of the healthcare professionals that's astounding. I'm convinced there's an autoimmune issue going on with me. And if we looked at the research, and we looked at women, particularly in my age bracket from Long Covid, they're developing autoimmune issues, and I know two friends that have tested positive, who are my age, and I requested from the GP and they said, No, I know by looking at you don't have an autoimmune issue. And I said, Oh, really? Wow. You know, I've had to source that test myself privately, it cost me 100 pounds, because I have some symptoms. And I've always had exzema and allergies and I just think there's something more going on me you know, a gut feeling. 

And there is another example of a clinician not thinking outside the box and thinking alright, she doesn't present typically the way I should present but Long Covid is a very different, very different illness. It's the inability to look and think outside the box and just completely write the person off. And I've said, you know, I'm going into my third year of illness, I think it's reasonable that I get this test. I think I really rode this wave out long enough, and I think we should be starting to think and look at other investigations. And it was just a no, no, I know the lab wouldn't do it. So I've done that myself. But I'm really intrigued to get those results back. But I think the lack of support and lack of interest just astounds me. It kind of feels like nobody really wants to help me to get back to work, nobody really, you're just left to get on with life, and ring down for a sick line, and you get your sick line. And that's it. And I know the health service is under tremendous pressure. I mean, I'm a nurse, I get up, I've been there, I've been burnt out. 

But there's a general lack of interest and empathy, I have felt being a patient has been extremely eye opening for me. And it's made me quite embarrassed, actually to be part of the healthcare system and the way that I've been treated, it's been really unfair. And I think at times an animal would have been treated better. You know, at times I've been made to feel like it's in my head. And I'm being dramatic and to go through an illness as life changing, as we both know that this is - to have your whole world turned upside down and to not have people believe you, I think we're all going to have a lot of psychological issues for many years to come off the back of this. This physical part is only part of it, I think the mental, psychological part will be something that stays with us for a very, very long time. And I, if I'm honest, I think I feel quite angry about that, about how I've been treated and about how I've been disbelieved. I'm not the type of person who just sits in their house and doesn't work. That's not my makeup. And for people to think that I'm not telling the truth. There's a lot to be answered for in terms of how we've all been made to fail. And I mean, even doctors like Dr. Asad Khan, when I hear him being interviewed, how he's been made to feel - I think there's a great lesson to be learned here, about how we treat people in general, it's really made me think about the way I interact with people, you know, from now on? 

Jackie Baxter  32:14  
Yeah, totally. I think you're absolutely right about the long term implications physically and mentally. I've been noticing it in myself, and I've heard other people talking as well, I think you're absolutely right. 

So can we talk a little bit about South Africa? How did that come about? Talk us through it.

Saskia Mulder  32:34  
You know, as usual, us Long haulers, you know, just trying to find any way to get better from our bed. And I had put my name down for the list for Germany, I'd seen Asad Khan do the interview in the BBC. And I thought - I'm going to Germany. And I put my name on the list. And six months passed, and that had taken me up to my two year mark. And I emailed Germany and I said, Look, Have you any idea? Because we didn't know where we were in the list or what you know, it was all very sort of trial by error. And they said, Look, we can't tell you where you are on the list. And we can't say we're long, that's going to be. 

And I had started going to hyperbaric oxygen therapy and have met a guy there who had been to South Africa in January. And he said to me, why don't you go to South Africa and see if you have the clots, like I did, before you go to Germany, spend all these 1000s. Why don't you rule it out first? And I said South Africa Wow, how can I get to South Africa? And he said, Get it a night flight. You can do it. It's fine. 

I kind of thought it's two years now into this illness, I need to do something. And I just before I knew it, I rang South Africa. And I said, you know, can I book an appointment to get my bloods tested for you know, the micro clots? And they said, Yes, we can give you an appointment in three weeks. And I nearly fell off my kitchen chair because you just know how alien that was to get - what three weeks. And of course I couldn't do it!

Jackie Baxter  34:07  
It's so unusual for someone to say yes to something too. 

Saskia Mulder  34:10  
And she knew what they were and she what bloods were for microclots. It was just, it was surreal. But of course my son was graduating in three weeks. So anyway, I went out a bit later. You know, for anybody listening, and worried about the journey. All I can say was, I was just coming out of a relapse because I'd been to my son's graduation. We met him in Heathrow. He came with us. I couldn't have done it without him, you know, even lifting suitcases and things which you know, we can't do. 

And it was like somebody was looking over me because they got upgraded to the Business Club Lounge. And that was lovely because my head was just starting to burst open with pain. That was it was dim lights and it was free food and it was just a lovely experience. And we sat there and my head got progressively worse and I remember thinking at a point in time I'm sitting in the winch, waiting to get on the plane. I was just wanting to turn around and go home. I thought What are you doing? You're crazy. You're trailing your family halfway around the world and I was so ill and I remember my mom looking at me and she knew I was really struggling. And before I knew a guy just wanted an awareness and right we'll go on and I thought this is the sign. 

And I got on the plane. And I lay on my right hand side for an hour and something very interesting happened as the plane was ascending - the pressure changed in the cabin, and my headache left me. So we had something to eat and stuff. I took night sedation, we all did. And literally, I woke up in South Africa the next morning. So the flight was absolutely fine for people worried about it. If you get a night flight, see the wheelchair support was absolutely fantastic. They met me off the plane. I flew from Ireland, to London Heathrow. They met me off the plane in Heathrow in a wheel chair. They fast check you through security, they fast check through baggage. And we needed it. I couldn't have done, I couldn't have done it without their support. And they were there. The staff are absolutely lovely. So don't let that worry you in terms of how you would cope. Because that was one of the things I was worried about. 

And again, when I was off the plane in South Africa, somebody met me, fast track through everything. And I had booked a private driver to the hotel. Them  I had arranged to go and get my bloods taken. And that was in Stellenbosch. I stayed in Cape Town. So Stellenbosch is about 45 minutes from Cape Town, that's a beautiful oldy worldly type area. Uber was like 20 quid. So you know, again, everything in South Africa is cheap. It was just the flight , the expensive part. 

That was really crazy that morning, going to get bloods taken for these clots. And they were lovely. They were waiting for me. The hospital was absolutely stunning. Money Talks - itwas private, obviously. They were just really, really nice and welcoming. And I was in the waiting room waiting to go in and Resia Pretorius walked in. I was just like, a teenage girl, and I was saying to my son, do you know who she is? And he said Mommy you're behaving like a star struck teenager! I said she's a hero, in the Long Covid Cummunity. And she was so lovely and down to earth. 

The way it worked then, and I'm not sure about how it is now - is you got your bloods taken and then three days later, you come back and seen - I call him Dr. Jaco, because his surname was my cognitive issues at the minute I think as Laubscher, Doctor Laubscher, but I say Dr Jaco. So yeah. So you went, he brought us in, me and my son went into the room, and he was the first doctor in years that had said to me, so tell me all your symptoms, I'd never been asked that by a doctor in two years. And that completely blindsided me because I hadn't prepared. I think the whole thing was overwhelming for me anyway. And I just said a few symptoms. And I looked at my son and says, Tell the doctor what my symptoms are. And he had to take over for me. 

He discussed with me the whole micro clotting, vascular aspects of long COVID, went into great detail about it, showed me a little model of veins, and endothelial layer and capillaries and how these micro clots are essentially blocking up the capillaries and then causing endothelial damage, which is the layer inside the blood vessels, you know. And then he talked about the hyperactive platelets and about how they become hyperactive and about how essentially the body starts to attack itself, sort of my stage into the journey when you're not treating the illness, then you start to have what we're thinking now these autoimmune issues and inflammation. There's no point in me trying to remember what he said to me because I really can't, because the whole thing was just so overwhelming. I just know that he was very nice. Spent a lot of time with me and my son. My son asked him a lot of questions. 

And then he said to me, right now we're going to go look at your blood results. And I was still a bit like, I really think I have these, you know after two years and he pulls up my results. I had microclots and me platelets were hyperactive. My microclots were a score of grade 2. So they certainly weren't the worst, but they were certainly there. And he explained that to me, they were all throughout my body. My platelets are hyperactive. Again, they certainly have seen people with a lot worse, but they certainly weren't normal. And they were probably worse than my clots. 

So we went back into his office and he prescribed me then, the triple therapy that we hear about so mine was 75 of Propenodrol, five milligram of Apixaban BD which is twice a day, and 75 milligrams of aspirin and he also prescribed me lots of other things for my other symptoms, you know, he couldn't believe I have been given help with really. He also gave me medication for - as a female when you're on triple therapy, to sort of slow down the menstrual cycle or stop the intensity of it. And if anybody is thinking about getting it done, please ask that particular doctor for it, because you really do need it. 

And really, that was it. He told me then to go home. And, you know, I would feel worse, as the blood clots were dispersing into the blood. That was all the inflammation and proteins and all the muck essentially being dissolved into your blood. So he said, You're gonna feel worse, don't panic. And he sent me a hematology report of pictures of my clots. And he said to me, WhatsApp me every Friday, with your progress, and he gave me his mobile number. I think in all my years as a nurse, I certainly never had an experience like that with a doctor, over here in the last 2 years. And he said, just contact me with updates every week. 

That was just a completely mind blowing experience. And I can't tell you the thought process at that time, I just remember being so overwhelmed. It's really crazy. We've kind of had a celebration meal that night, in the hotel, because I had blood clots. You know, that sounds really crazy. After two years of being told, you just need to be patient. There's nothing wrong with you. Everything's clear. To actually - no, I really am unwell. We were all a bit high. We were all a bit like, this is brilliant, you know, and then I came home and started taking the treatment. 

Jackie Baxter  41:44  
Yeah, it's like that validation almost, isn't it? Yeah, being told that your tests are normal is great, because you're healthy. But also you know that you're not healthy. So it's like, you know, you've got this inner fight? Haven't you going on thinking, Am I just making this up? No, I'm not making this up. And then that drives you nuts, doesn't it? 

Saskia Mulder  42:02  
Yeah. 

Jackie Baxter  42:03  
How did it go when you started taking the triple treatment?

Saskia Mulder  42:05  
So like, everything was long COVID, the answer to that isn't straightforward. And, I'm gonna be honest with people, because I know, there's a lot of people who want to hear about tripletherapy, and I wanted to tell them my honest experience. So actually, a side note before I start telling this story, Dr. Jaco had said to me, you've been unwell for so long. I don't know if you'll 100% be the person that you were. And I really appreciated his honestly. But I knew, I didn't go over there for a cure. I think when you've been unwell for two years, your body has got a lot of stuff happening. There's a lot of stuff going on with it. And I think for people to think that you're gonna be four weeks or five weeks or eight weeks on the triple therapy, and you're gonna be massively cured. It's not the way it is. But it's certainly a huge, massive part of the puzzle. 

So I knew before I went there, that I wasn't going to come home and be cured. So I think it's important that people realize, certainly the sooner you get the triple therapy, your chances of a full recovery, are much, much more. I've actually met people in South Africa who I'm still in touch who were at the six month mark, and they're doing really, really well, but they were caught a lot sooner than me. And I think we need to be very mindful of that. When we're talking about triple therapy and any therapy. The longer you've been unwell, the longer your recovery is going to be. 

So I came home and the first week I started taking the medicine I was feeling a bit brighter and a bit perkier and I noticed that when I stood - because I had terrible problems standing - my mobility is horrendous. And I remember thinking I was a bit stronger feeling - oh my goodness. I was a bit worried that I wasn't becoming unwell, because that's what you wanted, to get rid of all the clots. And then I got my wish, seven or eight days in and BANG. I had a horrendous two weeks. And what had started to happen just before South Africa is that my menstrual cycle, had started to come every two weeks, which was a totally new presentation because for 19 months, there was practically nothing happening every month. So then I started taking the medication and then those second two weeks for absolutely horrendous. 

Then my stomach was given me a lot of bother because I would have a very bad stomach from COVID. I knew that it was the Apixaban in particular that was triggering my stomach pain. So I dropped from 10 milligrams a day back to five milligrams a day. Just to help the pain, and I became really really bright, reactive. I noticed that my sensory issues weren't as bad. I noticed that I tolerate louder noises. Everybody that met me, my friends and family were saying I can definitely see change in you, I still felt very weak and shaky inside. But I felt a bit more sharper, a bit more with it. Then I had to go back up to 10 milligrams of Apixaban because Dr. Jaco wanted me to be on the full dose because he said, I don't know if it works. 

So I went back up to the full dose and within days I felt horrendous again, And I thought, right, just go with it, just go with it. And essentially, I took the triple therapy then for nine weeks in total. And as I said my periods were coming the whole time. And my Iron levels became very low and my hemoglobin. And I really have felt terrible. I stopped the triple therapy about a week ago, partly because I had ran out. And secondly, because I was supposed to go to Germany for follow up bloods, which I talked about in my blog. But I wasn't fit to travel - physically and psychologically can't do this trip. And I knew it was going to relapse me horrendously because I don't have any strength to deal with it. 

So I had been in touch with Dr. Jaco and explained to him what the problem was at the minute that I just wasn't able to make the trip. But hopefully, as I build myself up again, I will go back out. I'm pretty confident that after nine weeks, considering my score was a two, was quite mild, that I'd give my body a good blast of what I would say was my chemo to my cancer, I feel it was very unfortunate that my iron became very low, but I think you know, when you're menstruating every two weeks and you're on blood thinners, it's pretty cruel, I have no doubt that that has impacted. And it's hard to tell a response that I would have had if I didn't. 

I do know other people that are on it. And it's tough. I think for people out there wanting to know whether they should try it or not. For me, I absolutely don't regret it. It's a massive part of the puzzle. It's there, you know, the blood results are there. And I think unless we get our blood flow and our circulation, right, we're not going to get better. But I think you got to be mindful that it does take you on a roller coaster, and it's not easy. It's incredibly sore on an already fragile body. The fatigue from it is absolutely overwhelming. Because you know, they are all medications and chemicals. 

But to highlight the benefits I've had from it then are that - my sleep was so much better and, my sleep was really quite bad. I'm sleeping  much more deeply now. My circulation is a lot better. My hands and feet were either extremely cold or extremely warm. There's no in between. Conversely, enough, my food intolerances are nowhere near as bad. I have mast cell issues - I found when I was on the blood thinners that I actually could eat a lot more foods than what I had been able to eat prior to that. The pressure headaches aren't as bad. Although I've had a bad head for a couple of days there, I don't know what's triggered that - I was going through the eliminations, you know, was it something I ate, was it something I've done, because it's quite out of character, ithasn't been like this for a long, long time. 

But yeah, so they were the benefits of the treatments. And I'm now back on lumbrokinase,  and serrapeptase, which I was on before I went to South Africa. They're natural blood thinners, and the serrapeptase is the only thing that helps me with I have extreme pain in my limbs, nothing touches it, codeine, nothing touches the pain. And that's the only thing that helps me. So I'm back on those because I knew that they worked for me before I went out. And when I get the strength up again, I'll go and get my bloods done to see what way my body has responded to them. It's just unfortunate. It's just one of those things. But I think you have to stop pushing yourself at a certain time when you're so profoundly unwell. And think I actually can't make this journey and not beat yourself up about that. This is this illness. So back and forward, one step forward to 500 steps back.

I mean, it's a good reminder as well, isn't it, you know, that there are things that work, but we're also working with a body that is unpredictable. And you know, you have to kind of work with it rather than against it, don't you like you were just saying,

yeah, totally. Well, I would say, do your research about it. People would say to me, they would message me and say, you know, should I do this? I can't tell you - you have to go with your gut. For me, I had to do it. It was right for me. It was proof, it was validation. It's a massive part of the puzzle of what's going on with us? And I think to have that validated that you have clots and that your platelets are hyperactive. And it's so validating. 

But the treatment is - It's hardcore. I mean, Dr Jaco told me that all his patients, you know, that he was looking after with COVID when he put them on anticoagulants straightaway, not not one of them has Long Covid. And I think that's the nuance part of it, that we're going two years later, there's a lot of damage been done. So I think we have to be realistic, if you're a long haul or like me. I think the first six month, even the first year because you have a better chance of full recovery on anticoagulants. But I think by the time you get to my stage, it's a harder road. It's not to say it hasn't helped me, it has, they have helped me. But it's not a magic cure. And I've heard other people say that. And I think we need to be mindful of that. There's a lot of people putting a lot of hope and a lot of money, that this is going to be the magic cure. And it's certainly a part of the puzzle of pathology that you need to address to get better. But it's not the magic bullet, you know, and I wanted to be honest with people about that.

Jackie Baxter  50:28  
Yeah, that's really, really useful to hear. And like you say, Yeah, you know, everybody has these hopes and dreams and expectations, because why wouldn't we after so long? So yeah, like you say, it's for people to, to do their research and make their decisions. I guess,

Saskia Mulder  50:43  
you have to do what's right for you is all I say to people, because I think it's so personal. And people can say, Well, you told me this, you know, I just want to get into that. You just have to do what you feel calls you.

Jackie Baxter  50:54  
Exactly. You can tell people your experiences, but you can't tell people what to do. That's got to be up to them, hasn't it in the end, but I'm really glad that it has had some positive effects on you. So that's, that's positive. 

Saskia Mulder  51:07  
Yeah. And I think that I just need to build myself up again. And you know, I'm certainly when your iron's low that you're gonna feel horrible. So I think, I'm on supplements now for that, and I'm building myself up and sure, who knows what I'll be like in three months. It's like everything, with this illness you just have to wait. And I know another guy on it. He's the same length of time with me. And he didn't obviously have issues with the haemoglobin and stuff. And he does feel better. And he really is glad he done it. But he's still not here. You know, he's still not the person he was. So he's doing well. 

So I really feel another couple of years before, I'll be, hopefully, hopefully, you know, back to some sort of normality. But I think I just have to remain very realistic about this, it's not going to be a quick fix. It's that old thing with long COVID - Is it's time and patience. And that's the killer because people are losing their lives and their jobs and their partners. And it's easy to say, but I don't think we have any other way to manage this and, you know, it sounds a bit hippy, but I just had to learn to surrender. I just had to surrender to this illness because you can't dominate it, and I think that's what's kept me going and keeps me sane that - What else can I do? I just have to try and ride the wave. You know, take it one day at a time.

Jackie Baxter  52:28  
That's all the things that we're really bad at doing, I think as humans, are actually the things that may be the most useful. 

Saskia Mulder  52:35  
Yeah. 

Jackie Baxter  52:36  
Well, thank you so much for joining me today. It's been absolutely wonderful speaking to you and hearing about all your experiences and the things that have helped and that haven't. So I wish you all the best with with your recovery as well. So thank you so much.

Saskia Mulder  52:53  
No problem. Thanks for having me on.

Transcribed by https://otter.ai