Ben

Age at interview: 28

Brief Outline:

Ben lives with his partner and is making a gradual return to work as a data manager. He describes his ethnicity as white.

Ben has never been ill before. He was taken aback by the debilitating effects of Long Covid and the myriad of symptoms which have lasted for over a year. He has gradually begun to recover. He has found support from Long Covid groups and a structured fitness programme helpful. He has also built a strong relationship with his GP and has partially returned to work. Ben was interviewed in May 2021.

More about me...

Before Covid, Ben was healthy and active and he had never been ill before. In March 2020 he had mild virus-like symptoms which he thinks he picked up whilst traveling overseas for work. His partner was also ill but recovered quickly. After his initial illness, Ben developed aching joints, severe headaches, shortness of breath, and eventually struggled to walk more than a few steps. He was signed off work for 6 months before trying, unsuccessfully, to return.

He was diagnosed by his GP with post-viral fatigue. His symptoms have included loss of taste, phantom smells, broken sleep, visual disturbance, inability to control his body temperature, severe chest pains, a racing heart and dizziness. Ben has found the debilitating fatigue and brain fog the hardest to deal with and they have restricted his ability to lead a normal life: ‘it makes you feel almost kind of ga-ga, like you’ve gone mad’.

Ben has been very active in researching therapies and treatments for his symptoms. He has joined private online forums and a structured fitness programme for Long Covid. He has a very good relationship with his GP: ‘she’s been so responsive, supportive and flexible’. His experience with other health services, which included several emergency visits to the local A&E department, have been more mixed, and have sometimes left him feeling let down. He’s keen to get his Covid vaccination.

After 15 months since his first symptoms, Ben feels he’s ‘thirty or forty per cent of the way to getting better’, with the help of his partner. He is making a gradual return to work. His cardio fitness is better, but he still experiences brain fog.

Ben is an active member of his local online support group. Key for others starting on their journey to recovery include: learn to accept that you can’t do what you used to; accept support from others; be prepared to get involved in your own health; keep a personal journal; and do go to your GP and other health services but don’t expect them to have all the answers; try to find a local support group you can trust to share experiences and ideas about recovery with.

 

Ben had a higher heart rate than before. He felt like his heart was “working hard”. He went to A and E when he got chest pain “out of the blue”.

So, the next one is a fairly obvious one, it’s tachycardia, my heart rate is higher than it usually is, and even at rest, it’s now a good bit more than kind of where I was before. And particularly post-exercise and, and using exercise in the lightest of sense there, post walking round a single floor flat, it can be raised considerably. This can tie into interactions with medical staff, or kind of the medical side of it, at both points I ended up in A and E because of it, and my heart rate was kind of one sixty, one seventy, just resting and I think it combines a few different things. It’s a level of anxiety looking at your heart rate, your heart rate then goes up because you’ve looked at your heart rate, you’re in a hospital so you get white coat syndrome and it then goes up a bit, but this was on both occasions it was really quite a high increase compared to my resting heartrate. So that’s generally gone down. I would attribute that to, to what I’ve been doing with [named organisation], particularly. I can go into that detail of kind of what those are but certainly it was the initial impact, it’s now kind of stopped a little bit, but still even walking I would say stairs or any incline, you get quite a feeling that your heart is working hard.

The next one, and this again I’m sorry to bring it in later when it relates to something earlier, I was getting very prickly pain, a very sharp prickly pain. I can really only kind of link it to, if you imagine kind of the pain of sticking your finger in a bramble but almost like a circular version of that and it would move kind of across my ribs, under my arms on both sides, towards my back and at various times that came on, that was what triggered me to go to A and E. And a considerable chest pain out of the blue.

So you were worried that the kind of vice-like pain might be like angina or that kind of thing?

Correct, yes. Just something, something other than just what it was, and certainly on the first visit, I got told kind of, okay, there’s nothing much we can do, we think it’s chronic fatigue syndrome, just rest, but if you get any heart or chest pain, reattend for that, just given that it could be something else. And that has, and again I’ll link onto the medicine side of what helped resolve that, but it was a very uncomfortable pain which again in the anxiety side of it, is it something else than what it looks like? Especially the fact that the second time it presented, it was very linked to kind of heart and felt kind of middle of chest, starting kind of in the back, moving under arms and then moving to the chest so that as quite, quite concerning.

Just as you’re talking about that pain moving around, is that like over seconds or over minutes or over hours?

Yeah, so this was kind of a rapid onset and then it was probably ten or fifteen minutes that it was sore for, got to A and E and it was still quite painful, so by the time I got seen that was kind of half an hour of, of kind of prickly chest pain. And then we looked at the heart rate, that was elevated, it was just attributed to, to that, but my GP actually thinks that that’s linked more to the costochondritis. And that’s linked into how we’ve treated that, and I think that’s actually been fairly accurately treated. I’m quite glad to get that one off.

Ben describes what having ‘brain fog’ is like for him.

The fatigue is very, very linked to what is known as brain fog. I often end up calling it brain frog, because it’s brain fog.

As soon as it is more than one thing I’m doing, all the plates just drop. It’s not like I can spin two plates. So, if I’m in a coffee shop and somebody asks me something and then somebody behind says to the person, oh, no, get me a latte or get me a cappuccino, I can literally go, like, why am, why am I with you again, what am I here for? So, it’s that kind of, it’s the, the brain, linking to that brain fog, can be really, really impact on my. Often I’m not somebody that usually has to think about what they were going to say. I am finding myself have to really plan, and this comes back to your point about planning. I have to plan the conversation out to think, okay, what, what are the options they’re going to ask me? Do I have, maybe they’re written down so I know what the question’s going to be, and it’s that kind of, if somebody says to me, okay, I’m ordering a coffee, can I have a latte, please? Or what syrup do you want? That would throw me entirely, and it’s, that’s not, that’s not me at all. So, I’m, yeah, that’s still there, kind of everything, physically and mentally, is a little bit harder than it needs to be.

And that’s, yeah, that’s something that I think, I feel like I’ve improved over the last month considerably with probably two things that I’ve been doing which we can go into. But certainly when I’m, if I have a relapse or if it’s just come on in those early stages, that was, that was the biggest thing because it has such a psychological impact on you as well in terms of its, I think that to make it really simple, it makes you feel stupid, it makes you feel almost kind of ga-ga, like you’ve gone mad, that you can’t just ask for something, like the, the brain fog and the brain frog thing is a really good example. Like the words that, I know fog is very different from a frog but my, my brain doesn’t know. I think that’s one of the [inaudible] into the brain fog and the [inaudible] it’s kind of an autopilot failure, that’s the easiest way that I can, I can explain it. I can go into the kitchen knowing I’m going to do something and reach into the cabinet to grab the item that I need, and like it happened the other day, I loaded the dishwasher, was ready to put the dishwasher on, and the dishwasher tab that you put in the dishwasher and my [inaudible]. I opened the fridge, to look in the fridge for the, the dishwasher tablets. I know they live in the cabinet because I put them in the cabinet but no, I was in the fridge looking for it, and that’s, that’s happened a few times with kind of you’re doing something by autopilot, and it just goes wrong [laughs].

There was a time when my partner found a bowl that had meant to go in the dishwasher had been put in the fridge. It’s that level of kind of you know you wouldn’t do it if you were thinking about it, but you don’t have that ability to stop yourself from doing it because you’re not thinking about doing it So that’s, that’s where it’s really kind of impacting on kind of memory, is the other side of it, that I can be told something in one room and then I literally go into the other room, and I’m like what was the answer to that, or I would say the opposite.

Ben now has to carefully plan every aspect of everyday tasks, like going to the supermarket, to make sure he can manage them.

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.

Ben was attending a gym programme tailored for people with Long Covid. After several weeks, he felt his fitness was slowly returning.

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 [audio distorted] 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.

Ben described himself as 30-40% of the way to being better.

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.

Ben said his GP had been ‘absolutely brilliant’. She had been very flexible. They have become ‘co-experts’ on his Long Covid symptoms.

I mean, you, you’ve talked, mentioned a few times that you’ve seen your GP. has your GP been as responsive and helpful as you have, have hoped right from the beginning?

Yeah, so my GP’s been very, very good in terms of kind of supportiveness. It’s…initially it’s all been telephone which as somebody, I’m a people person, I like to be in person.

I like to see them in person. Some of the symptoms are easier to explain in person.

And actually my GP’s been extremely flexible recently with some of the other kind of…I had very sore limbs, I think it was a couple of months ago now, really, really sore legs again and kind of a feeling that I couldn’t move them correctly, so stiffness and kind of an odd stiffness that I hadn’t experienced before, and my GP said, “yeah, come down”, I live five minutes away, “come down, we’ll see you in person”. If it’s something that has a benefit to being seen in person, they’re doing that, which I’m a member of the Long Covid support group] and looking at other people’s experiences they have really not had great experiences there so I would say the doctor’s been absolutely stunning.

Yeah, building the connection to my current GP and, yeah, they were absolutely brilliant from the off.

That’s fantastic.

Refreshing to hear, I’m sure you…

Yeah, yeah.

…hear all sorts of, of horror stories, but that’s been, yeah, they have been absolutely brilliant in terms of responsiveness, supportive, kind of taking what I’m saying, and acting on it but also kind of if I’m asking for stuff to be considered, like I say, I’m on that group, [named website], if I see something else the doctor isn’t particularly aware of up to now and I propose that, she takes that away, validates it and, and comes back as well. So, yeah, really…and I know…I think you maybe feel [inaudible] as well you become an expert on your own health.

And you know…like you know which symptoms you need to speak about, you know which ones you don't, so, yeah, the doctor was absolutely brilliant in that respect, the kind of…

And it sounds as if you've felt…always felt believed by her and respected by her and as you presented your symptoms, would that be a fair…

Very much, yeah, very, very much kind of there was no…no need to convince her, like I explained honestly and frankly what I was experiencing. She could come back to me and say, yeah, this is what I've heard from you, do you agree, yes, this is…this is it. So, yeah, really kind of co-experting essentially, you're the expert on your own body, the doctor's the expert on what we can do about that.

Ben said he received excellent care on two visits to A&E. He felt let down and “dismissed” on another visit.

And when you say in hospital, are you referring to the A&E?

A&E.

Yeah, so you've not had any inpatient stays?

No overnights, literally an hour, "Let's do some tests" and…and you're away. Two…yeah, two of those were really good. Both, kind of listened to, understood, both doctors really good. Like, "Right, let's make sure this is nothing else. Let's do some bloods, let's check these other things". One of them…and I haven't counted it as a visit, I had the second bout of chest pain, I had really, really bad chest pain the day after that I'd been in A&E and their parting thing was, "Right, if you get chest pain again, if you get this again, come back". 

Came back in, presented with exactly the same symptoms and the team weren't quite sure what to do with me. So, I got sat in a chair for over an hour with nothing being done. And the result was, "Oh, we think it's all the other symptoms of long Covid, so just take some paracetamol". And that doctor was very dismissive. I felt very let down. The other time…and I'm not someone that wants attention, but every other time I've come in I've got a bed, done some bloods or we've put you on an ECG, this was, "Right, just sit in a chair for an hour", like I'd been forgotten, then when I did get it they took me to another bit of the hospital, because that was quieter, and just said, "Oh, there's nothing we can do, go away, take some paracetamol". "I'd just been taken off tramadol by your colleague yesterday, I have an acute pain requirement to have tramadol, paracetamol's not going to hit that”, and the parting, “Why are you here, if you get chest pain, come back". I said to him in the corridor, I was like, "I'm here because you told me that yesterday. Just take paracetamol and if you get chest pain come back. I'm not going to get stuck in this cycle, like that's why I'm here, because I have chest pain." 

So that wasn't great, but then speaking to the GP afterwards she's managed to solve the rest of it. So just about…that was the one time that I felt, hang on a minute, I think…that was the one time I thought, I don't feel believed, was that revisit at A&E. But the two other times were absolutely brilliant.

Ben describes how it can be difficult to decide if information online is accurate or a misleading ‘waste of time’.

The thing I’m trying to avoid and this, well, it happens on social media, is somebody sharing, and it’s often either American or kind of international markets sharing information that’s not quite accurate, but it gains a huge following online. So, I’m a member of one of the long Covid groups on Facebook, on social media, and quite often we’re seeing the same video being shared and some of the information just isn’t…either isn’t applicable to us in the UK, it’s medicines and practices that aren’t approved, or it’s just based on very kind of weak footing in terms of the scientific background. So that’s one of the big concerns I have, especially now that I’m kind of moving on with my recovery, that I’m better than I was before. If you have a very poor attention span or you don’t have that much energy, you can’t differentiate between these and you could be wasting your time and going down paths that just aren’t going to be helpful.

So from that point of view then, it would be helpful if this site were to check back with people to find out which, the sources of information that we highlight are ones that people have found to be genuinely helpful and to have been verified…

Very much so, yeah, and kind of have verified sources that is the concern there. I think it’s…there is, there is these two… There’s kind of just listening to stuff and understanding people are having long Covid, I don’t think the source of that is too needing to be dug into, but when it’s to do with this helped me or this is what I asked my GP for, I think those are when we think actually this does need, does need vetted more.

And I think sometimes, particularly in social media, maybe in the print media, so papers, magazines, they have an obligation to do that research, whereas online I don’t often feel that that research is, is being done.

Ben is an active member of a Facebook group for people with Long Covid. He explains how 'long haulers’ with Long Covid can give useful advice. He says it is important for online group administrators to check no ‘misinformation’ is posted.

Yeah, so there is a group of admins on the page.

We haven’t moved to a point yet that we request permission from everyone before they post, but if anybody in the group sees something that they don’t agree with, that gets reported through Facebook’s process to the admins to review it and we discuss in the group do we think it’s a positive, do we think it’s valid to be in the group and do we think it has an impact positively on people’s recovery or is it just misinformation, which some of them quite often are, or just negative with no kind of benefit to the individuals in the group, bearing in mind that some people joining that group, they have just had the doctor say to them you’ve got long Covid, versus some of the [members], we’re kind of long-haulers in terms of twelve, fourteen months of having long Covid. So, we’re recovering to the point that we can help those that are newly diagnosed, people who don’t have the, the capacity or the energy to spend on being able to validate the sources.

So, you feel like those of you who have got more experience and are long-haulers can steer people towards the more validated sources of, of information?

Very much so, yeah. People, people come into the group and either they, they post their main symptoms and we can help signpost to either other discussions that people have had about kind of their symptoms or resources or if it’s generally I’ve got this resource, I’m sharing it, and then if the admins don’t think it’s of value, we obviously speak to the individual and say, look, I don’t think this post is bringing anything to the group, or we feel that this actually, given the mix of people in the group, this could have quite an impact on, on individuals, not in a positive way. But it’s, yeah, I think it’s…

That sounds like…

…pretty…

Sorry, sorry, on…please on you go.

I was just saying, yeah, it’s that kind of responsibility as the admins to think if I was as unwell as I was at the start, I didn’t have somebody able to think for me in that way so I…you need that, kind of you rely on that ability for people to think, actually, no, this is not helpful, this is not good to be kind of…and this happens in other conditions as well, people either providing misinformation such as some of the stuff that you see about vaccinations or some of the kind of, well, false information that is shared about those and I think that’s why the group is very conscious that we avoid that kind of discussion that comes with that. This information has not been validated medically, there is no source for that, it doesn’t have a place in the group.

That sounds like that’s potentially quite a lot of work for those of you who are involved in the [group].

It can be, yeah, it can be quite a lot of work both with validating who’s coming into the group, we’re being quite restrictive that this is Scotland, given the disparity between Scotland and England with long Covid clinics, I don’t think it’s particularly good for anybody in Scotland to be hearing of this great experience that England are having with clinics when Scotland have said we’re not proceeding with those.

Ben said his Long Covid Facebook group had been a good source of information on how to manage different symptoms. He recommended joining a private Facebook group.

So, are you able to articulate the ways in which you’ve found the Facebook group most helpful?

Yeah, certainly. So, for me, it’s a variety. It’s kind of purely on a symptoms basis as we discussed with the symptoms, Long Covid is very varied, and a new thing presents itself every week and you think what a gift Long Covid just keeps giving and it’s very helpful to see, okay, you’re not alone in that, somebody else has had that, somebody else has experienced it and somebody else may be able to advise what worked for them and what didn’t. I think that’s been really helpful when I think I mentioned yesterday as well you have to become the expert in your own health and sometimes you don’t want to trouble the GP with it. You, you spoke to them last week, something else has just popped up, is it something that I maybe need to deal with urgently or if in this case, okay, yeah, try and rest and that might go away, and I think it’s been really helpful to consolidate the symptoms as well. Often brain fog can really impact on your memory, so it’s often a case of, oh yeah, I’ve had that, I just, I just thought it was by the by and actually it helps you kind of build them into a list that you can actually share with people that you’re not speaking to about it every day.

And then again just kind of it’s all over Scotland, it’s nice to see that your health board isn’t the only one that’s not doing it the way that you kind of hoped they could do it. I know looking at the success of some English Long Covid clinics, it looks really great so why haven’t Scotland done that? Why haven’t they done that where I live? But you look at actually only the major cities have done it, so there’s a lot of other people that aren’t having it, and there’s that almost comfort in knowing it’s not just me. It’s not just my area, it’s not just where I live, there is a lot of other people in that situation.

And is that…I mean, are… do you get specific kind of medical or other…there’s, you know, specific advice for people on the group?

Yeah, so generally it’s been kind of people have put in a symptom or this is how they’re feeling,” Anybody got kind of any experience of managing that symptom?” Generally, it’s “Here’s what I’ve done”, but a lot of people generally say, “but it’s still worth raising that to, to your GP as well”. So, people are very keen not to overstep that mark and to be giving medical dispensing advice, but also at the same time, “Oh, I tried this”. Certainly, for myself with the chest pain that I spoke about, that kind of belt around the chest, that was quite a challenging one for me and somebody else replied and mentioned gabapentin, for nerve pain and that’s how I ended up getting onto my list of medicines.

So, it’s quite a good resource for information, it’s, I’d never treat it as the same as calling 111, or going to a GP, but I think it’s that early stage of, okay, this is something that I can just manage or is this something, okay, no one else has had that, this is probably worth treating more urgently.

So, it’s been…

And it’s been helpful as well then in hearing about some things and then being able to take those to your GP and discussing with her, yeah?

Yeah, very much so, different, even different medication options or just kind of certain tests that people have had or findings that they’ve had, and if you’re in a similar kind of age, gender, lifestyle group, it’s quite helpful to see actually a few other people have had this. It’s not empirical evidence, I can’t give a research paper, but I can say actually a few people have mentioned this, would you consider it or can you consider it? And I think Doctor…my GP’s been very open to that and very kind of willing to listen to anything that I provide. It’s not a case of, oh, it’s on social media? No, I’m not going to listen.

And then when you, when you feel like you can, and I know this can be quite a step for some people, when you feel like you can, join the groups on, on social media. Look out for a group either local to you, to your kind of NHS area or to the country you’re in or even the, the area that you’re in separate to that. What I find is I know when you’re tired, you’ve not got the energy, social media can be very draining, but when you’re at a point when you feel that you can, it has been hugely beneficial to my recovery, just to have that safe space, a sounding board, just a record, helping to have a record to look back and think, oh, what, what date was I suffering that symptom? Oh, yeah, I had it for that period, it went away because I then posted four weeks later to say I’ve solved it, and this is what I did.

So make sure that you understand joining it can be quite taxing if you have very little energy, and it can be quite draining socially but when you are able to join a group to get some other ideas or just other people that are in the same position as you.

And just within that, from what you were saying earlier, it’s not just any social media but finding the right form of social media, maybe a more protected form of social media?

Yeah, generally, so if you consider what you’re going to be discussing, this shouldn’t be on a public group. This should be on a private group, so you should be looking for a group that you need to request to join.

And they’re going to have rules, they’re going to have kind of rules about how they engage, what’s allowed to be discussed. Make sure you’re looking at those before you either join or before you contribute to anything on those pages. Just make sure that you’ve done your, your checks.

And like you say, if you’re ever looking at them and you’re not sure, you can reach out to the admin on the pages and they can discuss and answer questions before you’ve even, joined the pages as well.

Because somebody who was less experienced with social media could potentially wander into a situation where they’re much more public about some very private…

Correct, yeah.

…feelings and…

Yeah, it’s it could be that their responses to questions or it could be stuff they post, we are a private group, nothing is shared beyond the group, and even if you look on Facebook, you would only find the name of the group you wouldn’t find any content discussed, unless you were a member.

So…

That is because I have…

So when you were recommending that people reached out to use social media when they felt able to, it’s, you’re particularly recommending those private protected groups?

Yeah, definitely private groups on, on Facebook, rather than public groups. There is both an element of their private information being open to all, these private groups are very much this is for people with Long Covid and this is not shared. Part of the rules is that it’s not shared with others that aren’t as well.

But again it’s something that maybe if somebody is not particularly able to think for themselves at that point or not able to even bring themselves to doing it, I would say nearly all these groups are very aware and very responsible in that way that somebody can join on behalf of somebody if they need that support if they’re supporting somebody even in a caring position or even just as a kind of a supporter of somebody, we often have parents joining on behalf of their children or, or carers joining on behalf of their, their responsible people that they’re responsible for.

So yeah, it’s very common to see, my partner has it, he’s not able to join, he’s not well enough to join, but I want to join to see these conversations, to understand what conversations I should be having with them, with their GP, and to just help me in terms of building up my knowledge base.

 

Ben felt that people with Long Covid began to get somewhere when they had a term to say “that’s what I’ve got.” Without a label for the illness it was difficult to access support.

So, you’re caught in this kind of middle ground, and you think, okay, either this has to last a year and I get one badge, or it clears up and they put another badge on it, and it was just a long bout of Covid. So yeah, it was… I pushed quite hard with my GP to get a clarity on what it was, and in the end, we put post-viral fatigue syndrome, likely to be Long Covid due to Covid infection at a time, it wasn’t for sure at the time. But again, that particular element of it has been really challenging in terms of accessing some of the support. There’s been a lot of you need to have a positive Covid diagnosis. At the time Scotland wasn’t doing widespread Covid testing. It was, did you match the symptoms, you had Covid. That became a slight stumbling block in terms of getting it recognised, but there was…I think the first time it was on the news, I was, like, okay, like now we’re getting somewhere, now we actually have a term that we can all group under and say that’s, that’s what I’ve got. 

 

Ben thought ‘Long Covid’ was a useful catchphrase but saw some advantages in using the term ‘post-Covid syndrome’ in the future.

Do you feel that Long Covid itself is a good description for the condition?
 
The more I think about the other names that are out there for it, I think post-Covid, post-Covid syndrome, PCS, yeah, PCS, I think post-Covid is actually better than Long Covid. I think Long Covid, and it could just be my association with the word long, it means your initial infection has lasted a long time, whereas actually post-Covid syndrome, you were unwell with Covid, you…and certainly for me I returned to health for a month and then everything else kind of went downhill from there. So I think there’s still a better name to be found. I think it’s more towards the post, if you consider post-viral fatigue is the normal terming, you had the virus, you recovered, got the fatigue afterwards. I think Long Covid, while it was a good tagline and where it did help connect to having had Covid, I think there can be a misunderstanding that you still have all of your traditional Covid symptoms which I don’t. I don’t have some of the, the kind of text mark Covid ones, I just have these kind of fatigue syndrome condition symptoms.
 
But I think it’s been, it’s been helpful as a, a catchphrase. It’s been helpful as a…I know often when you start having to kind of use acronyms and stuff like that, it can get very confusing, so Long Covid has been helpful for a, a buzzword headlines…
 
You’re filtering through a newspaper or a book, oh, there it is, you know, you know where it is, whereas if it was I think chronic fatigue is, hmm…S…CFS is often initialised to that, and sometimes you can miss that when you’re reading through it, so I think Long Covid has helped get us to a point where we’re now having the discussions, I think there is a better terminology longer term, a bit along the lines of post-viral or post-Covid those might be more suitable.

 

To manage his many symptoms, Ben was taking six types of medication daily. He filled a pill box for the week ahead and his partner checked it for him.

Brilliant. And that must be quite a job in itself just to keep track of all of the medication and take it at the right times and…
 
I’ve ended up getting a pill box and I have to, yeah, I have to, I do it every week, put them all out for every day, I check it, my other half checks it, again it’s back to this confusion stuff. I have to make sure that nothing’s been doubled and thankfully none of the tablets I’m on do I take more than one tablet, so even though they might not know what the tablets are, they can look through and go, hang on a minute, why have you got two white circles or why have you got two blue pills?
 
So again that’s…it links back to that, that brain fog of can you just check that, and there’s been a few occasions I would never…I don’t think that I’m that confused I would ever take them, I would spot it when I put them in my hand to take them, there was a double codeine in one, and there was two omeprazole in one of the other ones, and we’ve caught them by that check.
 
But it’s, like you say, it’s, it’s a lot to manage. It’s a lot to, to make sure you’re doing correctly.

 

Ben said it was disheartening to see people saying in the media that Covid is “just a cold”. He thought vaccine campaigns should also highlight the true extent of Long Covid.

Do you want to talk a little bit about what you think about vaccination as somebody who’s had Long Covid?
 
Yeah, I would be very keen to, actually. So that was one of the things that, as I was suffering from Long Covid, especially in the early kind of June, July time last year, it was quite disheartening to see young people and, and some other groups in the media saying that kind of vaccinations shouldn’t be done, it’s not needed, this is just a cold. It was very hard when you’re on the side-lines with Long Covid to think I would not wish this on anyone. I would never…I could never think that this would happen to me or to anybody that I would know, like it’s that much of a change in their daily life you wouldn’t think this was possible, and it was very challenging to see it in the media played as it’s just the flu or it’s just like a bad cold.
 
So I was quite keen to see the vaccinations take off and it’s been quite frankly annoying to not have been able to get the vaccination now knowing that some people have had a very positive reaction that have had Long Covid to having that vaccine in terms of their kind of body system, be it homeostasis, I’m not quite sure which ones are, are triggered, but essentially your body is reset and your body can then actually fight Covid effectively. And a good number are seeing a reduction in symptoms. Hence was the reason that I pushed with my, my GP to try and get me up the list. I know there was a small group that had a worse response to having it, but actually particularly earlier this year, I was at rock bottom anyway so that there can’t, there can’t be anything worse than this, so it’s worth the risk if I can get better.
 
Even now, physically I’m starting to improve, I would still take the vaccine tomorrow if there was an option. So, yeah…
 
And do you feel that that’s a relatively common view amongst the other people that you know with Long Covid? 
 
Yeah, so I mean, those with Long Covid and I think even speaking to friends and family that are now aware of what Long Covid could be like, there’s more of a, an understanding, yeah, this is definitely something that we should, should be getting on board with. I think the…I think it all relates to…if you’ve seen somebody with it, if you’ve not seen anybody unwell with Covid, if you’ve not had family members unwell, maybe you would be able to think it’s just a…it’s just a bad cold.
 
But the minute you speak to somebody that has had Long Covid or…or has experience of Long Covid, I think you suddenly see a change of heart and think actually maybe, yeah, if there’s no risk to me and I know there’s the…the blood clot risk from the AstraZeneca, but it’s, it’s minute in the scale of, of Long Covid, and if people knew the true extent of Long Covid there would be a higher rate of, of uptake of the vaccine.
 
The uptake has been high so far in older groups, but do you think that preventing Long Covid as compared with preventing infection with Covid just generally, do you think that’s had enough emphasis in the vaccination campaign materials?
 
That’s a really good question. Actually, I don’t think it has. I think it’s still been very focused on the initial infection, when actually like you say that Long Covid element of it, we look at the percentages of those that have Covid that go on to have Long Covid after a period of time, it’s still ten to twenty per cent are having it twelve weeks after. If you look at how many people were going to get Covid, that’s a huge number.
 
And I don’t think that that’s, unless you live it, unless you have Long Covid and see it from that lens, I don’t think people see it from that kind of second lens of, okay, you might get this other, this other syndrome or condition that comes with having it.
 

 

Ben described the trial gym programme which helped him to make progress with some of his physical symptoms. He benefitted from the one-to-one support and individualised goal setting.

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 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 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 that via YouTube link on Friday.
 
You went…the sound went a tiny bit again then. So, you were just saying 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 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 to increasing the movements and increasing the intensity.
 
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.

 

Ben’s messages for healthcare professionals included the importance of seeing people as individuals, having good communication between healthcare professionals, and explaining to patients why particular decisions were made.

So how about any messages that you might have for a range of healthcare professionals, so that could include GP or hospital specialists or it could include pharmacists or physios or…?
 
Yeah, so these are…I’ve got, I’ve got a few but there’s, I think there’s a few other kind of points to discuss around it as well, so my first one is don’t allow this to be the same as what’s happened with, with ME or chronic fatigue syndrome, that took far too long to be agreed as, as a concept and even now the diagnosis is still a challenge for a lot of people to, to get diagnosed with that, so learn the lessons that we’ve learned with ME, and get to a, an agreed this is the condition, this is the prerequisites, this is the treatment, and this is the prognosis. I think we’re getting there with Long Covid, and I hope the timeline is far less than it was for ME but learn those lessons that we learned there.
 
Remember as well when you’re looking at somebody with a condition, remember the person that’s in front of you, even though the textbooks may say that it’s generally eighty per cent of cases are in this group or in this group, try to take that out of the discussion and think are these symptoms matching it? Because I think that’s been occasionally with the Long Covid side of it, there’s been a couple of times when you think I know I’ve got this, I’ve got all these symptoms but the other person I’m speaking to doesn’t think that’s possible because I don’t fit into the, the risk group or the risk category. So, remember you’re dealing with an individual in front of you with those, those symptoms.
 
And then I think the other one is just being connected, to make sure that notes are being updated on, on the page of notes, make sure that anything that’s discussed is on there. I myself have had a few experiences where there’s been kind of miscommunications between what’s written in the notes and what’s dispensed and it’s caused challenges with either getting sufficient medicine or getting it quick enough. The pharmacy thinks we’ve issued that recently based on his, his prescription, he shouldn’t have used all of that. Actually, it was changed two weeks ago, I’ve probably used half the medicine by the end of that week. So, it’s that kind of just make sure that we’re more connected than usual. This is a longer-term condition, and as I said yesterday, my pillbox makes quite a rattle every day. There is a lot going on. Just make sure that we’re… when we’re making decisions about pain relief how much to give, understand for certainly for me and for other people with my condition, for us to come to a GP, for us to come and explain our symptoms can be draining enough.
 
But then having to deal with having not enough medicine, to try and argue is not the right word… try and discuss with as much energy as we can to those that are either on reception or in the pharmacy that we need this medicine, this is what’s keeping us from being in quite intolerable pain can take quite a lot of effort, so just understand in terms of when you decide how much of a medicine to give or if you’re declining, why you can’t give, for example, codeine, you can’t give a huge amount of that, just so you don’t have to visit a pharmacy every month.
 
I understand the reason for that because it’s a controlled drug but it’s just making sure that you’re informing the individual and I think it’s that kind of making sure that we see the person that you’re dealing with there and you’re helping them, because that’s, I think, as I mentioned in the, the messages to the individual side, also on the, the kind of medical professional side, be aware that these are people that have probably never had a long-term condition. This isn’t someone that is familiar with having to get referrals or getting appointments and a prescription too, so just help us understand the process. If something’s going to be a while, help us understand why you have to go down that, that route or why a medicine that has worked for so many other people can’t be considered for, for you. And just understand these aren’t people that are used to having that kind of discussion or, or terminology. I think that’s all of those, I can come back if I come up with any others.