I think with any kind of post-viral situation because you’re using so much energy trying to heal, that you’re unaware that you’re using because you’re, you’re not aware of that, and the average person, average healthy person has no concept of how much energy they’re using to do the slightest task. So, like I mentioned I could only read for ten minutes. You know, that’s ridiculous to me, I used to read all day. And things like watching TV, I couldn’t concentrate on anything that was too complex. Like I couldn’t have watched a subtitled programme because that would be too much. I managed to drive myself to the shops to pick up the order, and I put the radio on because I used to always have music in the car, and it was like I couldn’t stand it, it was too much. But that’s the energy it takes to listen and drive, it uses so much energy, you just don’t realise how much brain energy you’re using. I was doing jigsaws and I was- I fell asleep on top of a jigsaw because I was so exhausted doing it after about twenty minutes [laughs]. And it’s like, because jigsaws are really hard on the brain, they’re really good as a, a thing to do, but they’re hard on the brain because of using different aspects. So, you think you’re pacing because you’re doing jigsaws and you’re not doing anything really, but you’re not, because that’s still using energy. So, to pace properly you need to have a very strict almost timetable of rests. So, it starts with, with me it was like I could do something for fifteen minutes and then I’d have a half hour rest, and that would be my day. If I didn’t do that I would have to sleep all afternoon. If I had a morning of doing something I would be in bed all afternoon. And that going to bed is not a choice that you make. It’s not I think I’ll go to bed this afternoon; it’s like if I don’t go to bed now I am going to fall down. Like I said, I fell asleep on my jigsaw. So, it’s, it’s just, bam! You’ve gone.

Today I got dressed up like this is because my, the support worker took effort to dress me up. They put effort to help me, say, “Okay. You do your bit, I do my bit. We do it together.” She helped me say, I washed my hair today, “Right, let’s do this together. I’ll put the blower on you, hairdryer on you, you do this part, while I do this part, okay.” “You use the power and you try to rub to take out the wetness while I do this part. All right, let’s, shall we change?” “All right, you try to do this and I try to do this with you.” “Right, how do you feel?” “What else do you, shall, what else do we need to do?” Than rather like, “okay, that’s it”. It’s being a positive enabler and that really makes you feel that you are not useless. You are an able bodied person. It’s more client centred rather than just doing what you want because you just want to finish the job. And that helps you make a shift in your mental and physical aspect and that’s important.

Yeah, if you wake up in the morning and you think I could literally roll over and go back to bed for another twelve hours. And I was trying, hours-wise, I was trying to get consistent, going to bed at a consistent time, trying to wake up at a consistent time, just no, improvement on the tiredness, the achiness, and that’s when kind of fatigue comes into it, that this isn’t just a week, this is multiple weeks of feeling this way.

So that’s, yeah, that’s been one of the hardest symptoms to kind of deal with. Previously active, previously playing rugby, going clay pigeon shooting, living a, a normal life, and now this is, this has probably been the one that’s impacted the most that makes life now, everything has to be planned. Everything has to be, right, where am I going to park? How close am I going to be to that? Will they have trolleys? I’m going to have to lean on something. Like how, previously I could just leave the house without a concern, now it’s like where am I going? Is it a sensible drive? Do I need somebody with me? Just everything becomes planned, which is quite hard to, to adjust to, I would say.

So that obviously takes all spontaneity out of life but that must be exhausting in terms of the planning as well?

Yeah, it’s constant planning, constant, and you just end up falling into ruts potentially, you know, okay, I can go to that shop, I can park nearby, they’ll have a trolley, right, we’re going there. It takes away that kind of, oh, what if we were going to get that from somewhere else? No, this is where we’re going because I know it will be okay.

And it takes away that kind of ability to, like you say, that spontaneous. I’m usually someone that’s very kind of go with the flow, oh, let’s do that, let’s do this, and certainly in the early stages when I wasn’t aware of how to manage the fatigue, that, it really kind of, it just sucked any energy out of it into kind of what do I have to do? That’s what’s going to get done. None of the nice stuff gets done. It’s the, what has to happen. Bills have to be paid, we have to eat, we have to cook, and it’s that kind of stripping back, okay, this is what I can do today, this is what I want to do but this is what I can do.

So, I worked out that my symptoms sort of, my various symptoms generally seem to get worse when I’ve been doing activities that have a high like processing load, like a high cognitive load or a high physical load or a high sensory load or a high emotional load or a high social load. So, I’ve ended up coming up with a bit of a model where I look at a particular activity and sort of rate it as to how much load it’s going to put on me in those areas.
 
So, you know, for example lying on the sofa listening to relaxing music doesn’t really put a big load on me cognitively or physically or emotionally; there’s a little bit of sensory obviously from listening, and no social load because I’m not talking to anyone. Whereas an activity like taking my son to a sports tournament would put a big load on me in many of those areas so…And then there’s obviously lots of activities in between. So, I’ve developed a bit of a spider graph where I kind of rate an activity on those different factors, and then essentially the higher number, the higher load in total that an activity places on me 
 
…and then equally like within a day an activity such as talking to you now, you know, I could rate that on my, on my spider graph in terms of, you know, physical, social, emotional sensory, and so on. And then work out, you know, therefore, you know, what…I will need a rest afterwards. And then that helps to be…that rest will, the sensory shutdown will be restorative. It helps me know that I can’t get away with just going straight onto another activity.
 
Yeah. That’s amazing. And so, do you think, are you, are you conscious of using that then, day to day? Do you think you do that quite frequently thinking about, “Right this is going to be this level of load so therefore I’ll do that afterwards”?
 
Yeah. But it’s very recent. I’ve only recently…it’s taken me ten and a half months to kind of come to this [laughs]. I’m now finding it helpful. And I’ve also, I mean I’ve done a little diagram, spider graph to help actually explain to my family and my friends. And I’ve just tried it out on a couple of friends to help explain it a bit. And I think they’ve said it’s helped them understand as well, so…So it’s obviously I wish I didn’t have to do it. I wish that I didn’t have to think what load is this activity putting on me, but I am finding it helpful to help me manage my time.
 

So, a couple of weeks ago, three weeks ago, I went to the, the first time in a year and a half, I've actually left home for work. I went to an all-day workshop. Very much on the understanding that, you know, from my employer, that if it became challenging, I could just leave. But I viewed it almost as a test, I wanted to see what I would be like. So, it started at eight thirty in the morning. By the time I got to about one o’clock, I was struggling really badly. By the time I got to, about four o’clock, I was of no use to man nor beast. Apparently, it finished about six o’clock, and then I left. I know that because I was told that subsequently, because I can’t remember. And I certainly couldn’t tell you what happened the day after that, that Friday, no idea. It was just, well, my first kind of conscious recollection, really is, waking up on the Saturday morning, having completely lost the day before. Apparently, all I did was, kind of, sleep, and doze, and rest. So, if I sum all of that up, as I say, I, kind of the lesson I've learned, or the mistake that I made at the start, was thinking that, you know, if I can manage four hours today, well I’ll push myself, and then maybe tomorrow, I can manage four hours and ten minutes, and I’ll push myself and maybe the day after I can manage four hours and twenty minutes. That was the absolute worst thing to do.

What works is, you know, I've been working for a period of time and I'm feeling tired – stop, you know, rest. And if I, if I've got a meeting at four o’clock in the afternoon, you know, I'll work, I’ll start work in the morning as usual, I’ll work to the point that I'm tired, I’ll go and lie down for a couple of hours, if I can get some sleep, all the better. And then I'll be, be able to function. Because, if I keep working through, a complete waste of time, me attending anything. So, it’s as I say, the absolute lesson that has worked is that don’t fight against it, because you're not only going to be, you know, kind of be useless today, you’ll be useless tomorrow and the day after, and maybe the day after, depending how far you push it. When you see the signs, ease off, rest, and kind of manage the energy levels that I've got.

So, I think it helps and also yeah, it is difficult not to get frustrated with yourself like you just, I think initially for the first, for the decline into Long Covid, which is very much associated with pushing myself and thinking, it’s ridiculous. I just, you know, this is like just keep going. And I think doing that, and my mum was the first person who told me to like don’t do that. That’s not a good thing to do. You know, that’s like that’s often what happens  when people develop ME. So, she was the first person to kind of tell me to stop, which was really important. I think that without her telling me to stop, her kind of clinical knowledge and from her research then I think I would’ve just kept, kept going and made myself feel really, really severely unwell. So, I’m – or more severely unwell than I am – and so I’m very grateful for that.

But the fatigue lady, she said, “What you also need is positive rest” which is when you’re doing nothing, which is the hardest to do of all because if you lie down, and you’re like, I used to listen to an audio book or a meditation or whatever, but you’re still using, your brain’s still having to do something there, even if you’re feeling relaxed it’s still working. So, you have to have periods of time when you just lie down, and you don’t necessarily fall asleep, but you just lie down. So, they actually give you back your energy quicker if you can make yourself do it for like ten, fifteen minutes. It’s, it’s a long time to just lie there and not do anything. And you’re not trying to stop your thoughts, you’re not trying to be like meditation, it’s just lie down. I usually put an eye thing over my eyes and, if there’s noise, I’ll put earplugs in and just relax. And it just lets your system, and to be honest I usually do sort of fall asleep slightly because you are actually that tired, but you don’t know you’re that tired. So, as soon as I lie down, I generally I will fall asleep, which isn’t something I would have done before.

But that just shows you’re still tired, even if you feel okay, you think you feel okay, you’ve still got this level of exhaustion in you that you, you want to sleep all the time. So, the pacing is, it’s a really important thing to do and to get into the habit of doing quite early on. I think the sooner you can get into that and realise that you’re going to have to be slow and careful and not plan a day of busy things anymore, you’re going to have to have a little bit of time doing this and then rest, and then a little bit of time doing that, and then rest, and it, it, it sounds very boring but it’s actually how you start to see yourself heal. So, it’s very important.

And I do think a massive thing was about the childcare responsibilities and the inability to rest and recover. And I think that’s why we got ill longer, it’s probably why I was ill longer than my husband as well [laughs] because I just wasn’t able to rest in a way that my body was telling me it needed to, I couldn’t do it at all. So, both of our children still wake up in the night as well. So even at night-time our bodies weren’t getting that rest because we were up and down taking care of the kids. So, I do think that was a massive factor in our slow recovery, and the longevity of the symptoms, because we just didn’t give our bodies a chance to get better in a way that we would have done had we not had kids. Or had we had older kids that we could say, you know, just play on your PlayStation for two weeks we don’t care, just let mummy and daddy rest [laughs]. But you can’t do it with littlies.

Are there other factors you think that, that sort of slowed the pace of your recovery other than not being able to rest and looking after the kids?

I don’t think so, I think that’s a key thing for us actually. I probably needed to stop working but that was something, and my husband would get frustrated at me about it. In a loving way, you know what I mean. But then, you know, so I was doing bits of work while the kids were at school or the childminder. I was grateful though for having the school and the childminder while I was working because it actually gave me a break. So, because I was still suffering with symptoms, my working days I could be a bit quieter and a bit slower and I didn’t have to like do you know, be dashing everywhere and, being entertaining or anything like that. So, I think working possibly didn’t help but then by working I got access to childcare, which I do think helped me. So, it’s double edged.

And so what are those days after work like, then, for you, those days, almost like recovery days, what do you do on those?

Yeah. It depends how I feel. Sometimes I spend all day in bed. I get the kids up and out to school. My mother-in-law is fabulous. On the Tuesday, she'll come, and she'll pick them up and take them to school for me, and then she brings them back home. So, if I have a day that’s not so good, I don’t even have to get dressed, I just have to get breakfast, and the kids organised, and out, and then I just go back to bed, and just sleep all day until the kids come home. And then other times I feel okay, so I’ll maybe just potter around the house, or go for a walk, if I'm feeling good. But sometimes I've got work to do, so I spend my day doing work for the Wednesday, and then try and rest. And Thursday is similar; I get the kids to school, or if I'm not feeling great, my husband will take them, and then sometimes I sleep the whole day, and sometimes I just rest and read, or sometimes I feel okay and I can go and have a cup of coffee with a friend, or something.

I'd say it’s getting, gradually, fewer days of having to sleep all the time, which is good. Because when the kids first went back to school before I went back to work, it was sort of, five days a week, I was just sleeping for six hours during the day and then, going to my bed at nine, ten o’clock, and sleeping all night, and I just felt like all I did was sleep. But I do think that doing that has helped because I don’t need to do it as much as I did.

So hopefully, not just pushing through it didn’t, that possibly would have caused further damage, and as much as you wanted to…

Yeah, the decision between, do you push through, or pacing. Because at first, I was told to push through and I realised by myself that trying to do that, it wouldn’t, I would try and go for a walk, and it was short walks. I mean, I was walking around the block. So, I would try and do it twice instead of once, and I quickly realised that, if I did it twice, I would then be floored and I said to myself, I was going to ignore that advice, and just pace myself, and build up very, very gradually, walking a tiny bit further every day and that’s worked better.

Yes, so basically everybody’s given a certain amount energy and for simplistic things because I like to break everything down into simple, easy things and so did she and it’s really important to see it, this break down all your energy that you are given for the whole day into teaspoons of energy, okay. So a healthy, an all healthy person can have – you work out how much energy does it take you to turn over in your bed? How much energy does it take you to then after you’ve turned over to put your legs over the bed and how much energy does it take you to then stand up? How much energy does it take you to walk to your bathroom, to brush your teeth, to get ready, to shower…You figure out, imagine that you’re filling up your teaspoons with sugar, let’s say, so how much sugar will it take you to do each of those things. I know for me it takes a huge amount of effort to turn over, even to this day eleven months after Covid it takes me two teaspoons of sugar to turn over in bed, okay. Now it takes me one teaspoon to brush my teeth, it takes me three teaspoons to shower. It takes me two teaspoons to walk down the stairs. It takes me four teaspoons or five teaspoons sometimes to walk up the stairs, so I have a chart of how many teaspoons each activity that I have to do takes me and if it takes you X amount of teaspoons to drive to work…it takes me X amount of teaspoons at work, so you get the gist.
 
You figure out how many teaspoons it takes you each day to do, or tablespoons it takes you to do all the things that you need to do throughout the day and you know that you have, let’s say in total, you have 25 teaspoons of sugar and that’s it, that’s all you have for the day okay and you have to work out if it takes you two to turn over and one to put your feet over the bed and another one to walk to the bathroom, and another three to have a shower, you’re using up a lot of energy just to get out of bed and brush your teeth and walk downstairs and eat breakfast and then sit on the couch and then make a phone call and then you look and you’re running out of energy and there’s no, you have no other energy, there’s nowhere else to get the energy. Even if you have a nap, you cannot replenish that energy.
 
By the end of the day, you still only have that amount of energy, however many naps you’ve taken, however much you’ve done, that’s it, at a certain point, you run out, so you have to pace yourself. So basically, in the mor-, the night before I know what I have to do every day and I know how many-, I work out how many spoons it’s going to take me to do this. If I know I have to take my kids to an appointment, my daughter has a dentist appointment then I know that I will not be able to, I know I have to take everything downstairs with me when I first go downstairs in the morning because I will not be able to go back upstairs until much later on in the day because otherwise I’ve used up the energy I needed to take her to the dentist. That’s in simple terms. That helped me a lot, that helped me a lot because I wanted to run before I could walk.

So I need to do pacing, resting and be compassionate to my body. I only do three things a day to accomplish myself and, if I want to, one big task, not two. I will collapse. Like today, I did my personal care. I did a small talk with my, with my, [Name] my well-being coach for about half an hour because I knew I’m going to have a long hot day. My big task today is to talk to you longer. Another small task is to get my meal sorted and that is all in the Tupperware because I get ladies in the morning cut my vegetables and put it there. So that is important so that is what I do. 

By allowing them slowly to go hand in hand to work with you, give them some level of accomplishment and view their self-esteem and moving forward. That is what we’re talking about and understanding, which is really important because now I could do a bit more than what I could do in April because I got the support. And I’ve been making people understand how to support me like in cooking, how to cut the vegetables, how to prepare my meals and telling social services what is the difference between putting a cold meal salad out or sandwich, to cutting the pak choi to carers? What’s the difference? In order for me to help with my meal prep because ready meals are all high, most of them, as you know, the sodium level is quite high and sugar content is not ideal, it’s Western food. But by eating a nutritious meal to help me, also allow me to lead a more meaningful life and that helps in recovery because when you have something to look forward to, you don’t feel like you are a prisoner in your own home and you have no control of your environment.

That is very important because I like dressing up. Dressing up make me feel better. Just putting on a simple dress than just stuck in a bathrobe all the time for weeks and weeks when my mum say, “You are the bathrobe queen.” I say, “Yes mum, sorry.” [laughs] It’s always the same colour. [laughs] So I mean these are things, simple things, even putting on a lipstick and lip gloss. I look pretty now. You know, it helps. I’m a girl, after all, you know. And it’s my, it’s my identify and that’s important and that’s why I said that I try to do thing with communication passport, helping them understand about my culture and don’t treat me like I’m a doll, you know. I’m not a doll. I’m a person.  Understanding how to make Chinese tea, you know. Many things in the way I like helps me and having a little control of my environment because that improve my mental health, communication, communicating with me and these are the three aspects and that’s very important for me, for person like me in chronic pain. It’s what I feel for me and because now putting things in more perspective, it helps me to see that there is hope. I have some control. I am not hopeless. I am not only a mere existence.

And are you starting to sort of see, see signs of healing from implementing pacing? Or is it too early to, to say?

No, I would say the weeks I do the most wellbeing stuff, like I remember to do the meditation and I’m careful with my pacing and I really have nothing to drain me, I’ve had weeks where I’ve thought actually I am feeling fine, I feel fine. And then you’re sort of, oh but wait a minute, am I fine, because I don’t want to have a relapse. But it’s hard then to keep yourself back from just going oh I could walk the dog a bit further today or I could, I could cook a nice meal, because I can’t stand to cook too much. But then I’ve had a few times when I’ve done these things and then I’ve been back, like I say, I’ve had a relapse, I’ve had a bad week [laughs]. And then you’re not, you don’t come out of that relapse to where you were. So, that’s probably, the hard bit is keeping doing it when you feel better. It’s like I used to say to my clients, it’s like I gave them stretches for an injury and they would stop them when it stopped being sore, but that’s actually when you need to keep doing them most because that’s how you really feel it. And it’s the same with this is that you have to remember to keep up with the good stuff as much as you can, when you’re feeling better.

And I spoke to someone who had ME and they got better by doing this really careful pacing and all these good things over, over several, they took several years by the time they got to know about doing it. And I said, “How did you know you’re better?” because she’s better. And she said she just had a patch of time where she suddenly felt she had extra energy, she had more energy than she, you know, she needed. And she did a couple of things and she didn’t get ill again, so she was kind of like, okay, I can sort of tentatively start to go back to normal. But it’s that extra energy that you don’t have. So, even when I felt well on the weeks I’ve had a good week I wouldn’t say I’ve had extra energy; I’ve just started to feel like, I feel almost normal, I feel, you know. But you’re not really, but you have to just be tentative about getting back to it. But it does give you hope that you can get there. And that’s why it’s worth doing the work, because it’s a, it’s a job to have this kind of thing and do all the self-care. It is, it’s a full-time job some days [laughs].

And then how that now works is that I have a weekly check-in. I'll just get my diary up. I have a weekly check-in with my what they're calling a rehab specialist and we then, through that we talk about the last week, kind of mood, food, how things are, any pains, any different kind of things going on with yourself. And then that's one to one, it's about half an hour/forty minutes every week and then I have a live class that we deliver via Zoom, which class is kind of a loose term, so it's a group exercise that we do. And they started with really, really basic, so they were all kind of chair exercises. But then they split them into mobility, strength and cardio and I think the initial session was probably just stretching, like we stretched for forty minutes. Now we're moving it up so we're doing a variety of exercises and that changes on a cycle of every few weeks. We increased the intensity a little bit. So, it's…it's close to but isn't called yet a graded exercise therapy. But we are doing [inaudible], we are doing a structured team meeting of intensity of different motions. And that is done every single week. We also have a repeat of that every Wednesday, we have repeat of YouTube link on Friday.

So, you were just saying that you'd had, that it was building towards a kind of structured, a gradated increase in physical activity. So, you were saying that every couple of weeks they're increasing the intensity of the stretching and the other exercises.

Yeah, so you're given, during the sessions you're given the exercise, you're given a regression, a progression, to allow you to take those options as you go through. The general trend is increasing the movements and increasing the intensity. So last rotation, so last week, we were doing a jog for thirty seconds. Up until then we'd only been doing kind of a marching walk, or kind of a sped-up march, kind of [inaudible]. Then there's this kind of progression slowly, but there's also regression and progression yourself around how you're feeling. Linked to that, if you do have any kind of stretching that you do additionally, your PT will give you those. So, with my lack activity, it's a muscle I haven't work out in a while, I now have to do some additional stretching around that. So, you've got that support in that way. You then repeat that session. So, we do those every Wednesday.

By Friday the YouTube link's been sent, so I can actually repeat that class that we did. Throughout that they're checking with you, how's everyone doing, heart rate okay, and stuff like that. It's a good structure to stick with. And then you do what's called your build your own workout, so you do your own workout as well, which incorporates some of the activities we did in the group session but doing them yourself what's particularly going to benefit you in what you're looking to achieve.

So, the first week of it I was kind of I was open to what's going on, open to ideas. So, feeling pretty groggy the first week, a lot of aches and pains. And slowly definitely kind of improving, there's not been any other changes, I would say, in what I'm doing other than doing this that I could attribute that to. I was able to do the first week, I think I could walk maybe a hundred metres, two hundred metres, and I was busy falling over. I was able to do I think we set a goal of five hundred metres without my heartrate spiking. I was actually able to do four times that, I was able to walk two kilometres without it spiking. So, I think having the structure of it is really helpful. And having that one-to-one connection with somebody and setting the goals that matter for you and how we're going to get to those.

So, I mean, I never actually, I probably should have mentioned this. Another example of something I've been referred to. So, live in [City in Scotland], and here, there is a, so it’s, it’s a targeted, six-month targeted exercise programme, it’s run by, the Council’s local led body through their gyms. But it requires medical referral to get there. So this is me going back to managing my GP. So, I kind of found out this thing, it’s called, [name of initiative], I found out it existed, CFS is one of the conditions that they look to support. So, I went to the gym, got the form, took it to my GP, and said, could you please fill this in for me. Took the referral form, went back, and got myself on that, about five weeks ago, now. And so, is that helping? It’s not, not helping, but it’s, you know. So, three times a week, I’ll go to the gym and do light exercise against a certain kind of, you know, CFS tailored programme for an hour. And the first time I did it, when I got home – this was early July – and, and to quote my wife, “I thought you were drunk”. And it was just, it was, it was an hour of very light exercise, it had completely wiped me out. You know, today, it’s only five weeks later, and I'm doing more exercise, you know, each time I go, than I did then, and I’ll get home and my legs might be a bit sore. So that is, as I say, it must be helping, because I can do more exercise, physical exercise, than I could five weeks ago, with nowhere near of the same impact, as a result.

Looking back, do you think there’s anything that sort of slowed rather than helped the recovery, that you know, that you might have done?

I think, I’m a walker, I’m a keen walker and what I did was I started to just walk a little bit. After a month and a half, was it a month and a half or two months, a month and a half, I think I started to walk a little bit more. So I was able to walk ten, fifteen minutes, and then twenty minutes, so I walked, tried to make a small walk every day. And then I tried to build it up, and I think you felt like rubbish after it, and you thought, oh, this is taking me back, but my gut instinct is that it’s actually helped me. Because like it’s like I’ve been able to then walk a wee bit more, like…

Okay, you’ve been able to build in time…

Build, build, yeah, but even though you weren’t sure if this is going to help or not, and it felt like it wasn’t going to help, because you would feel maybe really tired after it, or the kind of shaking would get stronger after it and stuff. And you thought, mm, this isn’t doing me good, but then it was next time you tried to go for a walk, you could maybe go a wee bit further. And then a wee bit further, so I feel like I’ve been able to build myself up. I don’t know if that would have been the same if I’d just been sitting about. So, for me I feel like that’s been a help.

Well, personally I feel like I’ve still got lingering symptoms where, I’ve got like kind of nerve issues throughout my body and stuff, and I’ve still got shortness of breath, so for me that’s concerning, especially because I like to be active, so I want to know if I’m functioning less, so I don’t know if this has, possibly like damaged me in some way. So, for me, I’d like to know, because I’m starting to walk a bit more now, is it okay for me to do that? Can they give me some sort of maybe like a lung test or something like that to make sure that there’s not, you know, or maybe even, I don’t know if this is me just being over-anxious now because I felt so bad, but [inaudible] if there’s maybe been heart inflammation or something. I’d like know that there’s not been anything damaged, really, so I feel like I should actually get a body check, to be honest, but I don’t think you can get that from the NHS, you’d probably need to pay for that private, but I actually feel like I need that, I feel like I want to know that I’m okay.

I suppose I touched on this already but I’m just thinking about what, what kinds of information is available for people about Long Covid? And how easy that is to access? Is there anything else that you wanted to say about that?

Yeah I think so there’s, there’s various things like British Heart Foundation maybe or some kind of lung charity, I forget. And then, Your Covid Recovery from the NHS so there is information there and you can tell it’s been written very clearly so it’s easy to understand when people aren’t feeling very well. The problem is though, for me, is that they lack detail and particularly when you’re trying to build up the exercise gradually. So I spent a while thinking, “Okay, we’ve got the, the whole increasing ten per cent each week of activity but is that only for a walk that you set out from your front door and you walk down the street? Or do you count incidental steps within the house? Or if you’re in the garden just pottering around, does that count?”

Normally, it wouldn’t make a bit of difference to most people but if you’re only walking about ten minutes it actually does because by the time you’ve wandered around and made your dinner then you might be at your ten minutes, kind of thing [laughs]. So, I think it would be really helpful to have clear guidance on that. And I think some of the guidance about pacing as well tells you quite a lot about the principles of how you might start with it but maybe to have more scenarios, more kind of complex scenarios, would be useful. Everybody’s circumstances are different but sometimes it’s quite hard to go from the principles to put it in practice.

It just is really, really constraining a lot of the time. You know, it’s quite difficult to adjust your life to that point. So, I think those things would be useful. Also, more guidance about, so I’ve got an Apple Watch with a heart rate monitor. And I’ve read that you can do pacing to keep your heart rate within a particular threshold, but I don’t feel confident about being able to do that. So it would be useful to have more advice on that kind of thing as well. Because I kind of feel that we’ve got quite a lot of technology which could be useful but what’s missing is knowing how to, or having some advice from a healthcare person about how to put it into practice and how to really use that tool as something which helps you.

So, I downloaded Headspace, not really thinking it would be great for me, to be honest, I was a bit of a cynic, I am a bit of a cynic, but started doing it, and what a difference. And I think it’s the breathing exercises, they’re really helpful to [stimulate] your vagus nerve.

Doing the breathing exercises, and, you know, the meditation with it, really, really made a huge difference. I've got out of the habit of doing that now, and I really must get back into it, because it really did help. When I could, I did gentle yoga. So, if you go on YouTube, there are lots of yoga videos for people with PoTS. So, you know, not, you don’t want to be doing the fast-paced, crazy stuff, but more of the, the gentle stretching, and breathing, is helpful. So, I found that good, as well.