Iain

Brief Outline:

Iain lives with his wife and dog. He previously worked in two jobs but is not working at the moment. Iain describes his ethnicity as white. 

Iain’s life has changed from working in two jobs, keeping active through rugby and walking his dog before Covid. He now finds it difficult to go out due to worries about catching Covid again and his ongoing symptoms. He caught Covid early on, in the weekend before the first lock down in 2020. As well as the common symptoms, Iain is still badly affected by uncontrollable diarrhoea which has been ‘devastating’ for his life. He has had great support from his GP. Iain was interviewed in February 2022.

More about me...

Iain caught Covid early on, in the weekend before the first lockdown. He was working in two jobs, running his own small business whilst also working in a local pharmacy. He had set up this working arrangement after having a heart attack. Iain experienced all the common symptoms of Covid as well as gastrointestinal problems. He describes his severe diarrhoea as one of his worst symptoms. After his symptoms started, they never went away. Two years on, over about a 6-day cycle, he still experiences bone ache, mental and physical fatigue, breathlessness, brain fog and diarrhoea that vary in severity over this cycle. 

He has experienced a big change in his independence and physical stamina since having Covid. He no longer works and now relies on his wife to ensure he does not forget to take his heart medication. His brain fog means that he can forget to eat and how to do activities he likes. Iain was very active previously, playing rugby, but now he is extremely fatigued after up to 40 minutes of exercise.  He needs to rest to recover from the exhaustion caused by any kind of activity. He finds that normal aches and pains can be treated with paracetamol and ibuprofen, but the bone ache he has had since having Covid-19 doesn’t respond to this. 

One of his biggest concerns is catching Covid-19 again. This has made him very anxious about going out and seeing other people. He worries about what others might think about him avoiding them, but this worry also brings on his symptoms. Iain also worries that not being able to keep as fit as he did might worsen his heart condition. He feels like he is no longer himself, and feels that his life is ‘depleted’ and that he is becoming a recluse. He described his experience of Covid as being like having ‘broken a fuse box’ in his body which means he can no longer do even some simple things he used to be able to do.

Since having Long Covid, he has been unemployed for the first time after a long working life. He has found explaining the symptoms to organisations like the Department of Work and Pensions and trying to navigate the benefits system really difficult (‘tortuous’), even with support from the Citizens Advice Bureau. These problems have meant that he has lost out financially. Recently Iain has started thinking about retraining to go back into some kind of work. 

Iain has not had any treatment for Long Covid itself but has had lots of different medical investigations. He has had positive support from his GP who has gone through things carefully with him. He was diagnosed quickly within 3 months and has valued being able to speak to the same GP throughout his illness. Having this continuity has been really important for him. 

He has had treatment to help cope with some of his symptoms, including from an occupational therapist, a respiratory physiotherapist and a mental health physiotherapist who referred him onto a 26 week programme to help his anxiety. There have been delays in this starting but he hopes it will be helpful. He wants to be able to get to being able to some physical activity because of his previous heart attack. He is currently being seen by incontinence services, to try and work out the cause of his symptoms.

He has accessed some Facebook groups, but found them unhelpful. Because Iain previously served in the military he has accessed veterans’ services, some of which have been very helpful for emotional and psychological support, especially now they are starting to meet face-face. He has also found Wintergreen ointment helpful, not just for his pain but also for his brain fog. He encourages others to try it but to remember that different things work for different people. He suggests other people try to find the simple things that work for them, and not to rule anything out. 

Iain described the way he experienced his symptoms over six/seven-day cycles. He said, “I just go through that cycle continually”.

So, it’s quite a…it’s pretty severe. And if you imagine now, you know, it’ll be two years next year that I’ve been suffering. So, I’ve had diarrhoea for two years. So that in itself is madness. You know, I’ve… and it… you know, it’s not… the trouble is it’s not like diarrhoea. You know, you…people have a…you know, a certain, kind of…what they think a feeling like that is. You know, so you get a, sort of, dicky tummy, you get, sort of, butterflies in your tummy and then you need to…it’s not…it just comes. Just literally just comes.
 
And so that’s really been my worst symptom, so what happens with me is I get, like, a six-day cycle sort of, seven day, six/seven-day cycle. So, I start off you know, and you have these symptoms all the time. It’s just that… these are, like, the more predominant ones on the daily basis. So basically, get bone ache, I get muscle fatigue, I get, brain fog. Then I get, sort of, mental, kind of, fatigue, you know, general fatigue and then I have, like, a mini episode of Covid. And then it starts again. And I just go through that cycle continually.
 
And depending on what I'm doing, you know, the brain fog could come and go, you know, …to the extent, you know, I’ve had the occupational therapist down, you know, my wife has to take responsibility for me taking my heart medication. You know, I can remember to take it, but I might…but I might not, you know, or I might forget or…you know, whatever. So, that’s quite a big…quite a big thing for me.
 
So, in that cycle, I’ve yet to receive any actual treatment for it. I’ve had lots of investigations into what it’s not, you know, if you…if you're…just look at the…you know, the diarrhoea. So, I’ve had everything up to a colonoscopy to find out what it’s not. And they can't find out what it is. You know, so it’s just what it’s not. And that’s the same with everything.
 

 

Iain felt both relieved and frustrated when he received numerous negative test results.

So, I’ve had, you know, bloods done for lots of things, you know, so if you imagine every blood test, you know, liver function test and…right up to, you know, being a celiac and…you know, the amount of oxygen in your blood. You know, and stuff like that. So, I’ve had all…lots of blood tests, I've had lots …away for the GI things, I’ve had a lot of respiratory tests, you know…
 
CT things and my heart particularly……part of my lungs and then going up and, like, you know, you put a tube in and you do these things and they measure your output. So, that sort of test.
 
And they’ve all been inconclusive, so they’ve…
 
Yeah.
 
…ruled out certain things but not…?
 
Yeah. So, you’ve not got this, you’ve not…yeah, you’ve not…you know, so you’ve not got asthma, you know, so it’s almost what it’s not…
 
Not.
 
You know, not…yeah.
 
Yeah. Rather than helping you to…
 
You know, that, I have…you know, I haven't got lung cancer and that. I haven’t got heart disease and I have…yeah.
 
How do you feel when the test results come back?
 
I just…I mean, you’ve obviously got to be relieved…but you’ve not… you know, in then comes this frustration, you know, and when I go, you…you know, I have…I see the…you know, I see the question, like, so after the bowel thing it’s like, no you…you know, we’ll need to treat it as generic IBS. You know, but I haven't got generic IBS. You know, I didn't have IBS before I started this journey, so…can you tell me how Covid…you know, it’s the same question, why is Covid doing this to me? You know, the residue of Covid or what…or whatever it is, why it’s doing it to me. Because it’s whatever, it’s affecting every bit of me. So…yeah, it’s nice to know that I haven’t got, you know, pancreatic cancer or whatever they’ve tested me for. But it’s still…still not an answer to how I feel.

 

Iain had to stop his part-time job and part-time business because of his Long Covid symptoms. He found it difficult to navigate the benefits system, even with support from the Citizens Advice Bureau.

And the other major problem I've had is with the benefits. You know, the benefits side of things. So obviously I'm now unemployed. I am in receipt of my service pension which negates a lot of the basic benefit. You know, because its income related, but obviously you get your National Insurance paid. So, I went to the Citizens Advice Bureau to get—bear in mind, you know, I don’t know anything about this. You know, this is…I’ve worked all my life, you know, forty-two years I’ve worked this…you know, this…well not now, but, you know, forty-two years, you know, I always say that, you know, when I left school…you know, we left school on the Thursday and I started at the local cement works on the Monday, as you did.
 
And so, the benefit system is just…I don’t, you know, I don’t understand it. So anyway…so I went to the Citizens Advice Bureau who helped me complete the forms. Sent them off obviously to DWP. So DWP obviously actioned that and sent some electronic message to the Inland Revenue. The Inland Revenue assessed that I was going to get paid nearly six thousand pound in benefit and taxed my pension. So, I lost a hundred and fourteen pounds that month without receiving any benefit. So, it was crazy. So obviously, you know, in this brain fog, kind of, tired, so I'm on… and this is right in the middle of Covid as you might imagine, so you’re waiting fifty minutes on the phone to get an answer. You know, more than fifty minutes. And as I say, at the time when I needed it most, I lost a hundred and fourteen pounds.
 
You know, it’s bizarre, isn't it. You know, off my service pension. You know, that obviously gives me quite a nice standard…you know, if you imagine when I'm working at [pharmacy], you know, and I'm doing a bit of [business type] and I’ve got my service pension, I’ve got a really nice wee life. You know, I'm buying a new truck, you know, I'm going to Lanzarote, you know, I'm having weekends away, you know, going away to the rugby, all that kind of stuff. And then, you know, to lose that and then to lose the hundred and fourteen pound that tax on a benefit that I wasn’t getting was crazy. So eventually I phoned them up, you know, so the passageway through DWP was torturous. Absolutely torturous. Not so bad with the Revenue because…
 
So, I know what to say to them. But…so basically they say that…obviously the…the Inland Revenue said, right, we’ve worked it out, we’ll repay you your money back. But then I fill in another form for the additional bit of the benefits. So again, I do that through the Citizens Advice Bureau. So that then goes through. So, the same thing happens again the next month. And but because it’s a month down the line, it’s not a hundred and fourteen pounds. They take a hundred and eight pounds off me. So, you know, it was just…and that went on for four months. So, I ended up, you know, losing nearly five hundred and fifty pounds on the tax that they were saying that I was…when I…you know, and that’s a lot of money. That’s a lot of money when I’ve got reduced income and that sort of stuff.
 
And then eventually, I get the additional benefit, you know, extra…canna mind what it is, but I'm a special case, so I basically get thirty pounds a week. So, I’ve lost five hundred and fifty pounds and I'm getting thirty, nearly thirty-one pounds a week, which is taxed, you know, off my pension, but I’ve not made…I mean, I have had the five hundred and fifty pound back, if you like. You know, the Revenue have paid that back. But if you look at the loss that that caused when I when I needed it, to get thirty pound a week. You know, it’s… I’ve not had five hundred and fifty pounds in benefits yet. You know, it’s crazy [laughs]. Absolutely…absolutely crazy. Absolutely crazy.
 

 

Iain felt he had changed from someone “having a nice life” to being a “recluse”. He avoided people in the street to try not to pick up any illnesses and panicked on public transport, but was pleased he had managed a recent trip.

You know, this…this…this person who doesn’t…who doesn’t even want to speak to the kids on the street because he thinks they’re going to kill him, you know, by giving…by giving him the cold and…and that obviously…I just…I just must look very strange, I think. You know, as I…as I cross the road to avoid people and…and, you know, there’s a little path that goes on to, like, a bigger path where there’s fields round it and that. And I obviously have…the…it’s, kind of, a bit congested to start with so I…I just avoid that. You know, I stand and I wait until people…if there’s somebody coming up, I wait until they come down and, you know, they say good morning and I'm not…I'm not really interested, I just want to…just want to get going. So, I’ve, kind of…I’ll…you know…yeah, I must look like a strange, kind of, recluse, I think, which I…which effects how I think I'm viewed.
 
So, I’ve…I’ve just become this, kind of…not me. You know, it’s really…it’s really made me not me. And, …so the…yeah, that’s the, sort of, medical, sort of, passageway that this… and where I feel.
 
But I went up to [City] the other day to have a face-to-face meeting and that was the first…again the first time that I’d been on a train, you know, and…and a bus or that kind of thing and gone in to the middle of [City] to meet somebody in the past…you know, the past two years. That’s the first time that I’ve…I would have to do that.
 
And it was…it was scary for me. But at the end of it, I did feel quite good, you know, because I…because I managed to do it, you know, particularly the train. You know, I gauged…I gauged the train. And what happened was, it was after the storm…you know, the storm that we just had. So, a lot of…on the way back a lot of trains were cancelled. So, I then had to get a bus, you know, had to change my plan, get a bus to go to the…where I’d left the car. And, so that was quite…you know, quite an achievement for me, but just as I say that now, you know, when I think about, that shouldn’t be quite an achievement for me. You know, that should just be an everyday, you know, an everyday occurrence that I would be able to cope with that.
 
But, you know, I found…I did find myself panicking getting the bus. The bus was obviously more crowded. And, I had to deal with roadworks in [City], so the… where the bus stop wasn’t where it usually was because it was on the [area], so I had to walk away up the [area], you know, to get the temporary bus. And again it’s, sort of, stuff that I would…you know, normally wouldn’t faze but it…I was really agitated, you know, by the time I got home. So, that was…that was quite a strange feeling. You know, that bit of pride that I’d managed to do it but yet, you know, another reminder of what I wasn’t again, sort of thing. So it was, quite a…aye, you know, very…very good and very bad in the same kind of breath, sort of stuff.

 

Iain appreciated people being respectful and giving him space but thought some people’s attitude was “strange” when they acted as if they were going to get infected.

What kind of responses do you get when you tell people about, you know…?
 
Most people think it’s still infectious. So, they draw away from you. So, it’s like, oh you know, and that can be anybody that’s gathering berries, you know, -on the walks that I go. You know, if I go, “Can you just give me a bit of space?” “Oh…oh what for?” “You know, I've Long Covid.” And they’re like, “Oh.” You know, and they think that they’re going to get infected and then it’s this…and people’s attitude to it is, kind of, strange. You know, I’ve now…a wee while back I thought, I would just explain to people, you know, people that I would normally meet on my dog walk and stuff like that… “Look, I have got Long Covid.” You know, if they move, I’d go, “That’s very respectful, you know, I have got Long Covid and it’s nice, thank you very much.” But even, you know, that attitude can change depending who they’re with. You know, so there’s like a dad who does the kids, if I meet him and his dog, he’s quite respectful. But when he’s out with the other mums and dads walking down the school – I live right on the school run, you know, you go down my road and the park, and the school’s in the park, sort of thing. He’ll just bash on past you. You know, and it seems to be quite, kind of a bit, kind of, strange, you know, how people react to that. I'm not—yeah, so when you tell them, you know, the response is usually that of, “Oh are you still infectious,” kind of thing. And then you kind of go through that.

 

Iain said that what worked for one person might not work for another because “it might be a different fuse box that’s broken.”

So, I don’t think that you can, you know… what helps somebody else might not help you. You know, other people swear by paracetamol and ibuprofen, and that’s fine, if it helps them, it helps them. But, you know, you need to…you need to find your own way. And I don’t think…you know, absolutely don’t rule anything out. You know, absolutely don’t. You know, it could be a change in diet. It could…it could be, you know, change in…lack of…because I…I think, you know, because…you know, the way I described the fuse box inside me…
 
I think…somebody else, it might be a different fuse box that’s broken. You know, so what necessarily works for me on a different system that’s blocked or clogged or whatever, right. So, I think the answer is just…you know, I think if it…if it looks reasonable, you know, so try paracetamol, if it works, it works, you know. Try Deep Heat. If it works, it works. You know, try…you know, because we could all say we could eat more vegetables, eat less meat, you know, drink more.

 

Iain felt that his GP was knowledgeable on Long Covid. He kept up to date with research studies and professional guidelines. He went through a flowchart with Iain to diagnose Long Covid.

So, what happened was…I mean, my GP’s quite… the surgery’s quite small…so there’s basically one…one full-time doctor and a couple of part time doctors. So, …I think just because I was phoning up on the day that I required a sicknote to start with…I spoke to the same GP so by the time I’ve, kind of, needed them, you know, they already had, kind of three months’ contact with him.
 
And I decided just to always ask for him so, you know, I found him very supportive. He was very good…there was a…I think a local… another local [area] GP became the lead because of the…her effects…you know, the effect it had on her with the Long Covid. So, he read up on a lot of her studies because, you know, he was quite good I think at looking at the, sort of, professional, sort of guidelines on that. And there was…there was various, kind of, flowcharts and stuff that came out to help with the diagnosis, so he did very quickly diagnose me with Long Covid, despite never having a test. You know, I was in it… you know, before the test and everything. So, he very quickly I think, correctly diagnosed me. Whereas that doesn’t always seem to be the case.
 
When would that have been roughly? What point of time would he have given you that diagnosis?
 
About three months in.
 
Three months in.
 
Yeah. He got…he got a flowchart but… and he was mulling over…he’d be mulling over, you know, the, sort of…what’s the other condition that’s chronic tiredness? You know…
 
ME?
 
ME type of thing…yeah. Then I think some guidance came out and he was able to work…he worked through…he actually worked through the flowchart with me…So that…you know, if you’re looking for what I think…what was…for me it was keeping the contact with the same GP.