I don’t know whether you’re comfortable about me asking your thoughts about the future. I realise it’s a challenge.
 
It’s interesting, me and mum discussed this yesterday because I think up until recently, I had a lot of hope with it being this Long Covid, but I would slowly improve, but now I’ve got different diagnosis such as POTS and EDS which are lifelong syndromes. My outlook has changed, and I feel like it’s not, life sentence sounds really dramatic, but it’s a lifelong, they’re lifelong syndromes, so, although I kind get stronger, I hope, I’m going to have to get used to this changed way of living. But it was funny, mum said yesterday, quite a while over the last two years, I just wouldn't talk about the future, and I found it really difficult to plan anything.
 
Sorry, can I clarify, did she say she wouldn't talk about the future, or you wouldn’t talk about it?
 
I wouldn’t. I don’t talk about the future. I would shut down the conversation just because I was so fearful of what the future would bring and still am. I can’t imagine what my future will look like at the moment. I just try to take it day by day because I think I’m quite a logistical person and on a day-day basis, I still need lots of help and I know what the social services are like, and I know what the council is like because I used to work with deaf people and deaf people that have additional disabilities. And I know how hard it is to get carers and things like that. And I obviously think it’s one thing relying on your family but having to have someone else come in is a completely different scenario to get my head around. Yeah, so at the moment, I’m taking it day-by-day, can’t really answer that one. I know where I live it would have to be ground floor, I know that much [laughs]. And an adapted bathroom because it’s really difficult washing with the temperature and with standing. And career wise, I find that incredibly difficult to talk about because it took me ten years to become an interpreter. They say it takes a minimum of seven. And I’m not quite ready to admit or give up on the profession. But my cognitive dysfunction depends on how it does and not being able to process two languages at once. I have to really assess that at some point.

You know, do you have hope for the future that you’ll improve or how do you feel currently about that?
 
How do I feel about whether I’ll improve? …I mean of course I would like to be who I was before I had Long Covid, very much be the father I envisioned I would be. Whether I’m hopeful? To be honest, I try not to think about it because I don’t know how hopeful I am. I know some people have had Long Covid for a bit and then recovered. Some people have been more drawn out, like myself. We don’t know enough and that’s both a blessing and a curse in that regards, right? One of…and given that Covid is going to be more pervasive as a disease more generally, I actually had Covid again for a fortnight…no, sorry, a fortnight ago and I was, kind of like, maybe it will function similarly to a vaccine and it’s too early to tell but actually my health seems to be getting worse again, so I don’t know. I would say it’s not that I’m not hopeful for the future, but it’s that I’m not hopeful that there would be any substantial change in my condition because I don’t see any reason why it would change from theories or papers I read online.

So how’s your day-day family life different at the moment?
 
It’s not how we ever wanted it to be. I mean, our hopes and dreams are pretty much shattered, that would be how I would start by saying. I think we dreamed of travelling the world, and I know Covid has stopped that for everybody, but, you know, I… I dreamt of Vinnie learning to surf before he could walk kind of thing, and, you know, he loves swimming, he loves…he loves sport, he loves the water, he loves music, and we love art galleries, and we love history and we love…you know, that kind of stuff and we love learning about the world in the world. So to be cooped up in four walls is, kind of like, the worst nightmare for us.
 
It’s… it is tough, you know, we’ve been through some really, really difficult times and it’s been probably the hardest time of my life ever. Covid has literally rocked our world and I… you know, I say that I will recover but I don’t actually know if I will if I’m honest with you. My legs…every day I hope my legs will get better, but then I…I can’t walk to the car and I—I think, ‘Jesus, will… will my legs get better?’. And then I stumble for a word and I think ‘God, I thought I was over this’. So…

I think it’s difficult isn’t it because in terms of Covid I guess people’s responses when they get Covid and their recovery, seems so different doesn’t it. Everyone you talk to it’s so varied. So, I think it, it must be hard to have a clear idea of how to manage patients necessarily going forward. And I guess there was probably concerns about at that point particularly it was January, about NHS overload. So, they weren’t possibly that eager to get me in to, to assess me because they didn’t want me in there. So, this was obviously after I was my isolation period. They probably didn’t, they weren’t eager to get me in to assess me, but it probably just sounded like Long Covid, which it was. And I was probably quite like I need a signal, these are my symptoms, I need to just get on. So, I wasn’t really pushing for anything either because I was probably of the mindset where, you know, I just need to ride this storm.

So, I’m accepting of that, I didn’t really expect more. Maybe if I’d gone with a different, maybe if I was a bit more, sort of, hopeless and overwhelmed in the management of my symptoms, they might have responded to me differently in that initial phone consultation. I think I was quite accepting of I’ve just drawn a, a bad straw but I could have drawn a worse one.

But, you know, it’s, kind of, you’ve got to try and, I don’t know, hope, hope it comes back as well. I mean, yeah, I don’t know. I don’t know what you can do really. There’s not a lot you can do at the minute, is there?

No, I mean, you talked about this recipe book. Is that something that has been developed by somebody who has had similar symptoms themselves?

Yeah, I’ve just, I'll [inaudible]. It’s sponsored actually by, obviously, it’s just something my wife got online and they, the first sort of few, few copies, and it’s just purely for long Covid, sort of, symptoms. So, it’s just got about ten, twelve, thirteen different recipes in it. Which is a, just seems to be quite good to try out, so, I've tried a couple of them out and they're quite nice. There’s a good, like a, they call it an ‘Any Salad Dressing’ so basically, it’s a nice vinegary salty salad dressing that you can stick on stuff and it gives it a nice hit. But the trouble is it’s all, none of it’s real. None of it’s getting, none of it’s getting your taste and smell back. And it’s, kind of, like, looking for little ways around it and things like that. And the underlying thing that sits in you is the fact that all this stuff isn't, I'm not getting my taste and smell back basically [laugh]. You know, it’s, kind of, you know, you can look for other things that spark you a little bit but, it’s just a bit depressing [laugh] I suppose that you, you don’t, sort of, there doesn’t seem to be anything you can do about it. You don’t know how long it’s going to last. You don’t know whether it’s going to come back. You don’t whether it, you know, if it’s going to come back in part of not or, or what really. So, it’s, sort of, almost, sort of, just waiting really.

And how’s that changed over the months? Did you feel like you were, sort of, anticipating every day, would it be back today, or…?

No, no, not, not really. I mean, I accepted that it was what it was and that’s what, that’s what it is until, until it changes basically. But always checking to see if it changes. but, yeah, it’s, not like a daily thing you wake up and go, oh I haven't got my sense of taste and smell. You, kind of, almost forget it because you’re not getting anything, any feedback in there. So after a while, it's just, there’s nothing making you go, oh I haven't got any sense of taste and smell, because it’s, you know, there’s no, sort of, spark in there. It’s not like you're smelling horrible things particularly or anything like that, so you kind of almost forget about it. And then go, oh gosh, yeah, I can't, and then when it comes down to something where you actually need to use it, you realise that it’s not there so much. But then I feel, I do feel like some days, I have, are better than others. So, I don’t feel like some days I can, it might be all the different food I'm cooking and stuff, but some days I feel like I can get it a bit more. And other days I feel like it’s just completely gone.

And it’s just, yeah, it’s a difficult one to have to, sort of, you don't know whether you have to, if I knew I was never going to get it back, then I, I would deal, or if I knew that I could probably get it back, that’ll be enough to get your head round it, I think, you know. You, if I know it’s never coming back, okay, you get your head round it and, you know, that’s, that’s the way it is, you, but if you, if you knew you were going to get it back, then again that, that would be nice. But it’s just the, kind of, this is what’s happened. You know, what’s going to happen now, you know, and what’s going to happen next week. Is it a, you know, it might, should I expect to have it come back, should, you know, is going to or not? And it’s, sort of, that, sort of, definition would be really nice. Because it could help you get on with it a bit more, if you know what I mean. 

So, living with the uncertainty of it all is a, an extra downside to it, is that what you’re saying? 

Yeah. Yeah. Because you can't, it’s harder to deal with what it is, if you know what I mean. Is it a temporary thing or is it a, yeah, is it going to be there forever. It, it’s, yeah. I mean, I’d rather it wasn’t there forever but if it is going to be there, there forever, I’d like to know. 

Very much, you know. It’d be like, right, okay, you know, if you’ve got, you’ve got, get on with it[laugh]. You know, you’ve got to try and work something out with this. Whereas if you know it’s coming back then it’s, kind of, well grin and bear it for a bit, you know, maybe or, or, you know, it’s not so bad. But, yeah, some, sort of like, indication would be good. 

So, I think over the ten months I’ve tried a few different things as the journey’s gone on, and yeah, some things have been sort of less and more effective [laughs]. One thing that’s been sort of helpful I think has been keeping a bit of a diary. So, I sort of started quite early on keeping and giving myself a mark out of ten for each day and keeping a record of that and just to sort of be able to monitor, you know, the ups and downs. And that was what I think that’s what helped me realise quite quickly that it really was a very up and down journey, a real rollercoaster [laughs]. So, I might have, you know, a day that I thought oh, that wasn’t too bad, my symptoms weren’t too bad, I feel okay, and give it a seven or eight out of ten, and then the next day could be a two, and then go back up to a six. And so yeah, so that was a bit of a crude measure but keeping a little bit of a diary of my symptoms and how I was feeling that’s been quite helpful. Less helpful definitely was me trying early on and realising that I couldn’t set myself targets or goals in the same way as I might do or might have done previously.
 
Do you think you’re better just now or are you somewhat the same? 
 
Yeah I don’t…I haven’t recently felt like I’m improving, which has been quite hard. So, I think over the summer I did feel a bit more hopeful that I was having a few more better days and things but it’s hard because obviously over the summer our timetable was different over the school summer holidays to normal so there wasn’t as much racing around as a taxi service for my children and so on. It was just like this, and obviously summer’s a bit nicer and warmer and lighter and, you know, cheerier generally. So, I’d say then that I’ve found it a bit more discouraging recently that I don’t feel I’ve really had more better days than I was having. And in fact, if anything I feel sort of more down about, about the fact of not getting better. As I say, I’m not sure how much of that is to do with the fact that it’s winter and darker nights and yeah, the fact we’re approaching obviously December. Next month will be the anniversary if you like, corona-versary as people call it [laughs]. And the fact that I’m approaching a year has made me feel a bit more despondent. It’s sometimes hard to separate out what is sort of me feeling emotionally better versus physically better sort of thing. But I wouldn’t say recently I feel like I’m on an uphill trajectory at the moment. So, yeah.

If you compare yourself to before the pandemic, do you feel kind of, because for you being recovered is just still maybe going back to the same place where you started which still wasn’t great for you so.

Yeah. For me, I feel I’m in the same place that, like before corona where I am. More than that I’m down now because no smell, not no smell means I can hardly smell but not like, similar, you know the strong smell, I can’t [inaudible] or anything that and is affecting me a lot as well, my like when I talk a lot, it is affecting my talking everything and that’s like then feel tiredness. Still got the thing. It’s got similar but I feel like it’s gone bit more than yeah, anything interest not that much. I will do it. I will not said not do it but if not done, not feel that after okay, it’s gone it’s gone. So in my way I try to finish thing as early as possible, not wait for long so I feel that thing, so I feel it more tired, more everything, you know, more pain in the body. Still got the pain, you know, breathing and this pain. 

You’re in even more pain. It sounds like you had a lot of pain before. 
 
Yeah. It’s ongoing like more pain going on, more thing, more tiredness and like still not feel like you know, like what I can do enjoy before. Sometimes if I can’t, don’t do it, I don’t want to, sometimes, you know, want to take a jacket or sweater, I don’t want to take it as well, sit down but when I have to do something else I have to do it that time so like this.

So, I would say honestly well from mid-February onwards it started to improve slowly, and it was like intermittent days of feeling good and bad. And I would say it was the end of March when I started to think “okay I’m feeling like me again”. So, yeah, the worst of it was really. So, there was that intense period when we had Covid and we were isolating, where we felt really rotten physically as well with the aches and the pains. But for me I think the worse period was that January to mid-February because it scared me and, and that. So, that was probably, actually the symptoms in the first period were probably worse because it was more intense. But it felt like a discreet period, and I was just waiting for it to end.

I think I still have days where I’m tired out of, inexplicably and I still have sometimes where I need to catch my breath a bit more. But I would say actually I’m better now and I’m out running about doing stuff with the children. I didn’t exercise at all until May because I didn’t, so that was, yes, so in May because I didn’t feel like I was able to have the sort of, lung capacity to exercise. So actually, even though I’m saying I’m better by March, actually I still don’t feel like I could do any exercise because I didn’t have that strength in my body, and I didn’t feel like I could breathe properly to do it.

So, I also put a lot of weight on in the beginning of the year as well because I wasn’t exercising. But now I’m at the point where I feel like I can exercise again, I’m running around with the kids, I’m able to juggle. I mean, as much as anyone can, able to juggle work and the kids, before I just couldn’t comprehend it all. But I’m definitely better, there’s just the odd lingering thing that’s, kind of, there. But, yeah, I definitely feel like we’ve come out the other end of it.

How far do you feel like you are down a road to recovery at the moment, would you say? So, it sounds like the chest pains have largely subsided unless you do too much physically.

Mm-hmm.

The headaches have gone, is that right?

They’re subsided, unless you’re overly tired, but I mean we can all have headaches when we’re overly tired, so I’m trying to think that way more than they are like the Covid headaches. The cognitive side is improved, but it’s not when I’m tired. I’ll go backwards again, so that hasn’t gone [coughs]. My taste hasn’t come back properly yet.

So, what’s…can you…

Smell.

Can you describe a little bit where you’re at with the taste and smell? I think you said before you could taste…you could distinguish between sweet and sour, but that things didn’t…so do things taste as they used to?

I have been fortunate, I mean, again, when you talk to friends, I have a friend, close friend, and she had Covid, and after a few weeks, she kept smelling diesel in the house, right, to the point that she had people come out and check the house and all sorts for things, but it was probably one of the phantom things after Covid, that’s what we put it down to [laughs]. But I haven’t had any of that. So, I haven’t had the phantom smells that I’ve heard and I mean, she went on for a while with this, and she still does, I think, and that’s months after. Myself, as I say, I was probably about five or six days into having the Covid illness itself, and that’s when the taste and smell went, and it was just like bam, it just went with me. It wasn’t a subtle degeneration in taste and smell, I was literally eating something in the morning, and then lunchtime I couldn’t taste it. And I had breakfast, and that was a long time of nothing, just literally nothing, taste and smell. Now, we’re looking at from November, what are we looking at now, November, December, January, February, March…four, five months.

I’ve got a taste of minimum, so I can taste sweet things and I can taste spicy things, so anything else though that’s a plainer taste like this Easter, you know, with chocolate, I couldn’t really taste chocolate. It was there and it kind of had a nice texture, but I couldn’t really particularly taste the chocolate per se. Same with things like cheese, I can’t…I love cheese, and I can’t really taste it, so I’m buying blue cheese all the time, or I’m buying the strongest one you possibly can think [laughs]. I was never a great one for oranges, I found them too sharp, for example. Now I like an orange, because I can just about taste it [laughs], which is probably not a bad thing, and when it comes to meals, it’s more spicy things, so I’m trying to eat more…make my own stuff as much as possible, so spicy curry things or adding a chilli in. I definitely can have a higher threshold to like chillies and things like that than I ever, ever had before [laughs]. Because a lot of other things, a bit bland, and smelling, I could smell bits now more than I could, but not much. I can smell perfume now, which I couldn’t.

And does it smell like perfume, if that is not a silly question?

Yeah. Yeah, it does, but it’s more like it’s taken…it’s as if you’ve taken the…you’ve dumbed it down, it’s duller. So, I have to probably be careful if I put it on, because I probably put too much on, but it’s taken the edge of it [laughs]. It’s just a duller sense, so it’s coming through, but it’s smaller, but it’s not everything I can smell, so lots of things you just can’t smell properly yet that you would have done, so…

And again, do you feel there’s a gradual improvement in that, or is it just a little bit hard to say?

It’s hard to say. You think you’ve probably got some of it back, and you think, is this it? I’ve got a bit back, so it’s better than where it was. And I can taste a few things now, which is better than nothing. But is it going to improve any further, I don’t know, I don’t…I hope so.

Do you want to just kind of reflect on where you feel you’re at, you know, at this point?

Yeah, certainly, so when I look back over kind of since June, July time, I was quite unwell at the time, really pretty unwell… the combination of the pain, the tiredness, the brain fog, just everything, there’s a lot of interactions, there’s a lot of kind of the pain prevents you sleeping, the sleep makes the brain fog worse, there’s so many kinds of interconnections. I think I’m at the point now where I feel kind of, I would say, I don’t want to be swayed by something, I read yesterday that talked about kind of how me having kind of structure can kind of have a really marked impact, I feel considerably better, I think I’m at kind of thirty or forty per cent of the way to being better. I think for me, I was very, very lucky that I didn’t get the, the chest infection side of the, the Long Covid symptoms. The only thing was the shortness of breath linked to kind of activity.

If I feel, like I said, a couple of days ago, I was able to do most of the day out of the house without having to be too rigid in my planning, and that’s, that’s the first time that’s happened in quite a while. So yeah, starting to, to at least feel like I can start making decisions that have a positive impact on what I’m doing, and could set me on a course to recovery.

That must feel like a major milestone.

It’s, I’m still pinching myself. I’m still thinking am I having a lucid dream that I’ve actually managed to get somewhere with it. It’s quite cathartic to finally get there, and you pinch yourself and you think, okay, as long as there’s no huge relapse miles out there, I feel like I am finally on a, a good trajectory to recover, which has taken, well, kind of twelve, thirteen months to get myself to that point. 

That’s fantastic to hear that you feel like that’s where you are.

It is, yeah. It’s taken its time but I am, yeah, I’m finally somewhere that I think, okay, I can, I can see the light at the end of the tunnel now. It’s not, at the early days it was very much a, we are down the coal chute, there is no light, there is no, this will be me forever.

Whereas now recently I’m like, okay, I managed to do that five hundred metres, I actually managed to do four times that. I can set reasonable smart goals with support to get this recovery on its, on its way, but I think it’s certainly been a learning experience for me to have to be so involved with that.

So, to begin, if I go back to the very early days of it, I would say that, you know, kind of physical exercise and mental, mental exercise were both on a par with regards to how they triggered it. Today, the physical, I need to do more physical activity to trigger it now, than I used to. But the level of mental activity requires the same. Basically, the physical side is getting better, the mental side isn’t, or not getting better perhaps, but improving. So, if I think back to kind of the dark days of December, so, from home into town is less than, into the centre of town, is less than half an hour’s walk. So in December, if I walked into town, I couldn’t have walked, I just couldn’t have walked back again. And even going for like a twenty minute, half hour walk, I'd have to, I'd be home and I'd be lying down, and you probably wouldn’t get me, out of a horizontal position for, for hours. 

And through, kind of November, December, January, there’s, we’ve got a couch downstairs, that has got a fantastic mark in the arm now, which is all the oils from my hair, because I just lived, pretty much, lying on, lying on that couch for large chunks of the day. And physically, you know, twenty minutes, half an hour’s physical exercise, that would wipe me out. Today, so for example, yesterday, I did, I had yesterday off work, went through to [City in Scotland]. So, half an hour’s walk to the train station, train into [City in Scotland] three hours walking around [City in Scotland], with lots of breaks, train home, walk home, I was tired, but not wiped out. Now, if I rewind a year and a half ago, that would have, I would have been neither up nor down with that, that would have had no impact on me at all. Whereas, when I got home, you know, I had to sit down, l had to, I had to rest, but I didn’t have to lie down and go to sleep. 

Whereas, on Friday, Friday was actually meant to be a day off as well, it was a colleague who was stuck with a project, so I jumped on to help them out. I started about eight o’clock in the morning, and by half past eleven, and it was quite intense, again there was a lot of thought involved, I had to, you know, figure out how all the moving parts would fit together. By half past eleven, I was done, I couldn’t keep going, so that was three and a half hours of that, that kind of, you know, lots of mental exercise, totally wiped me out. And that was me for, I was wiped out for most of the rest of the day. 

So, I’m beginning to find myself. I am doing much, much, much better. I think, for me, Ramadan was, I remember standing washing up and I was like, “I’m back.” Oh my god, she’s back like I love it. I know who I am. This is what I was trying to find. I’ve found it. I went up to a friend and I saw her because she had one, you know, we opened our fast at her house and I said, “I think I’m back.” I started laughing and she goes to me, “You will be tested again. Come on you’re in this whole rut. We all are. We’ll go back to normal.” And all of a sudden she goes, “Just try and do one or two things and try and keep to them, consistently. Whatever it is that’s going to pick you up. Whatever it’s going to give you that boost. But keep to it.” For example, as I mentioned earlier, I went to the Friday prayer today, that’s who I am. And I go, I reset myself and I try and find the energy for the rest of the day.
 
Yeah, I’m still exerted. Yeah, I’m still exhausted and shattered. Probably am going to nap later. I probably will snap up. But knowing I’m so much better than doing that then from being in bed all day every day, being miserable and headachy and a completely different person. So, yes, it’s having a conversation with you it’s like you don’t know how much miles I’ve come away from that. Am I 100 percent, no. I’m not 100 percent. But, again, I do know the tools to try and pick myself up. Try and go back to the gym. Try and, you know, watch my diet and all the external factors that would help me. I’m definitely looking into that. I’m hopeful that it’s going to be slow, but I’m going to get there. I’m going to get there [laughs]. [Pause] But you won’t find me queuing up for a vaccine [laughs].

I agree with you that it can be difficult to hope for like full recovery when there’s no full understanding of what that might look like.
 
Yes, that’s the reason why, even though I’m tired, once a month I do a video to show other people my journey. To hope to make a difference for that, you know, even though I am like this, it’s okay to not be okay. And I think the most important part is acceptance. Once you have accepted, then you have look at possibilities of moving forward in your life. It’s like the pigeon, you have a pigeon in a cage. Even though the cage door is open but if you are in fear, as the pigeon you will not fly out from the cage, even though the door of the cage is open. So, I’m hoping that I can give some motivation to people that, even, you are not alone. There’s a lot of us going through this and we will all support each other to get through this and there’s a lot of things you can do even though you are not in a good place and need help, there are things you can still do, and I hope that that will help others as well. It means taking things as slow as possible in life, yeah.
 

I think I feel optimistic about the future at the moment because I think I am getting better. I think things are improving. So, at the moment, I’m feeling that I will get better and I will still be able to do a lot of things that I want to do. Whether that’s denial, I don't know. But I think it’s just optimism at the moment. I feel like I’ve accepted where I’m at. A big part of it initially was just having to accept that you've got this and it’s not going to go quickly, but you know, just hang on in there. So, I suppose every month that I can look back and think, okay, I did just a tiny bit more that month. I feel, okay, that’s good. It’s all going in the right direction. 
 
The difficult thing is when you have the blips and sort of horrible relapses and they happen quite a lot when you think, oh, actually I am getting better and then one of those kicks in. And that’s really quite depressing. It’s quite hard to hold onto the days when you’re feeling that bit better. Thoughts I’m never going to get better. Just going to be with me for life. Lots of negative thinking around it. But generally, I think I will get better. So, I think there are things to be hopeful for in the future. Definitely.