Long Covid in Adults

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.

I’ve had a CT scan of my brain, and that came back normal. I done an ultrasound on my heart and that’s came back normal, as well. So, I mean, nobody really has the answers to tell me what it is.

So, it sounds like over the last year or so, you’ve had, like a whole suite of different tests?

Yeah, I have, yeah. I’ve had several blood tests, I’ve been to an ENT to look at my throat. I had a, I’ve been to a neurologist, I’ve also been to a cardiologist. And there’s nothing substantial shows up. Like I said to you before, the only physical thing that I can kind of prove is ulcers on my throat that I get.

And how does that make you feel with, you know, the kind of negative results coming, a whole series of negative results coming back?

I mean, it’s a kind of Catch twenty-two, because it’s really good that there’s nothing showing up wrong, but then it would be nice if there was, they could have kind of, they could get answers to what is causing me to feel like this. It’s really, it’s bizarre.

But like I say, it’s good in a way, but then it’s bad in a way, as well.

It’s very frustrating.

So OK, I then started researching Long Covid. On the notes I was reading other peoples accounts of it and everybody has had this slight, different experience. Some people had different complications and symptoms of varying severity. But there were one or two accounts, that sounded exactly like, I don’t know I think it was from the British Heart Foundation website where one person’s account of it, that almost mirrored mine exactly. In terms of like it might be six weeks after, six weeks after they first caught Covid. That’s when a lot of things started and what they’d also experienced symptoms to similar to mine. So, I was like, okay.
 
And in some ways that was a huge relief at first, because where earlier that day, I was worried about strokes and heart attacks and all sorts of nasty stuff like that. I’m not saying, Long Covid is pretty damn debilitating and, and yeah, a problem. But there was some big reassurance about just realising, okay, I’ve got this, and I am going to get better at some point. I don’t know how or how long ‘cos it was all just so new to me. But I will recover from this, and then yeah and that was I suppose while I was out there over the next 24 hours that led me into a ton of Google searches, reading other people’s accounts. I didn’t know anyone who had this. I don’t even know where to look and I was in another country. So, I just, I was just trying to read up on it and, it was and then I was put in, one of the accounts I’d read suggested I joined one of these Long Covid support group, which I’ve done through Facebook. And then, again, you know, I went in there and I suppose, at first, it’s just kind of reassuring to know that you’re not the only one going through this and other people are having symptoms like yours.
 
You know, there’s initial, there’s an initial reassurance and comfort from the fact that OK there are quite a few people going through this that reacting to Covid like this, ok cool. In the short term, that stabilised my mindset a little bit.
 
But actually, that tires you out like trying to process information and get better and stuff. I reckon it’s tiring just trying to walk and go do your shopping. The mental exhaustion is as debilitating as the physical wear-out that happens. You try and get your head around things and you’re quite tired and it’s a bit harder to process and then also like you just go into the long, you go into the support groups, which I was going to and reading up on different people’s accounts and responses to the questions. And you’ll see questions given by most, the most, certainly I felt a bit stronger and it's just the fatigue like the breathlessness I could sort of get around myself with the breathing exercises.
 
I spoke to the doctor from the British Heart Foundation and was really helpful and gave me a steer on that stuff. But then yeah, so you’re starting to look at questions on these support groups like, I’m still suffering from the fatigue 12 months in. If anything, it’s actually getting worse. And then, there’ll be like 30 replies saying, yeah, same here, same here. Yeah, 18 months in and still counting. Eleven months in and it’s getting worse. That just starts to freak you out because my natural, I’m an optimist naturally and I just think, alright well, I’m pretty sure I’ll be able to fast get over this, this recovering scale like hopefully six months in are now bish, bash, bosh. I’ll get better. I always do.
 
You start reading all of this stuff and you’re like, oh my God, what is, what if I never recover.
 
So many people are just writing, oh my God, I’m really starting to feel that I’m never gonna recover and, and just had a few days where all of that stuff is really starting to bring out of it. I thought, ‘oh my god, what if this is my life now, what if I’m not even able to work again, do the things I love, run, play football.’ And yeah, it’s quite, it is quite a difficult one because there are so many views on how you could or should get better. It’s hard to get your head around. There are all of these like scare stories. Not even just in support groups, by the way.
 
But if you Google news articles on Long Covid like there was a good one in the financial times generally about what it is and you know, there are resources going into trying to work out how to help people with this stuff. But the examples they feature in there are all kind of the most shocking types. People in their 20s and 30s that were fit and healthy now unable to leave the house. You’re just, you’re surrounded by the virtue of just searching about how to deal with this and you’re just surrounded by all of these scary examples.
 
And I think, I had started to realise, after a week or so, but I think that in the narrative I was surrounded myself, I intuitively started to feel that okay, I actually need to start surrounding myself with some more positive stories and just creating a more positive narrative for myself around this like, it’s good to understand it, but it’s just making it feel overwhelmed and actually quite down and, I intuitively know that this is not going to help me recover like at all. Like I need that belief and that that positivity and hope.

What has been the biggest sort of challenges you’ve come across?

Getting clear information, because [coughs], it seems to be, I don’t know, it just seems like there’s so many different kinds of symptoms associated with [coughs], excuse me, Covid, so it’s hard to say, you know, like this symptom I’ve got just not, is that Covid related or is this something else? You know, there’s no sort of clear answers really to say, well, this is going to happen and then that’s going to happen. [coughs] And to expect that, you’re left kind of worried, thinking, oh, is this, this normal to be feeling like this, I need to find out if this is something that’s okay to feel like this if you’ve got or had Covid. So, I know that it’s okay, because it’s expected or has it damaged something, should this be investigated, I don’t know if this is normal, but there’s no real answers, really, for that, I’ve found, really.

At what point in time did you think to yourself, I think this is me, you know, the stories that other people are sharing about prolonged symptoms, and kind of how many weeks in, or months in, did you identify?

Hmm, that’s a good question. I think it was quite late, I think it was quite late. It was after I had seen the neurologist, so we’re probably talking about three months in, before I understood that other people were having the same thing, and that it was quite common. So those first few months were really difficult, because I couldn’t understand why I wasn’t getting better. You know, the Government had said, this illness will give you a bit of a cough for two weeks, you know, take two weeks off work, here’s your fourteen-day certificate. Then, there I was, you know, months down the line, with evolving symptoms, different systems affected, things that the news hadn’t spoken about, or the press conferences hadn’t spoken about. It was really confusing, and overwhelming, and worrying.

So, I guess I was expecting, a bit like when you have the flu, to wake up one day and for things just to be better, but that never really came. I would describe it as waves of feeling unwell, and those waves would actually start numerous times a day, when I was in the very acute. I would have moments where I'd think that it’s passing, I must be getting better, now, that was the, that was the bad bit. Actually, it all just recurred over a period of weeks. I don’t know if that was my fever spiking, or the virus replicating, and increasing in my system, I really don’t know. But that was a persistent feature, and really difficult, because every time I got worse, it made me feel a little bit let down.

That second acute phase, where I was a bit doolally, in honesty, that kind of petered out, into a more subtle phase, which lasted, gosh, probably about a year, a year or more, so until now, in varying degrees of intensity. So, I have had what they’re calling Long Covid, I’ve had ongoing symptoms, some have been cognitive, so even now, I'm struggling to do the job that I was doing before I got Covid. When I was in the thick of it, maybe eight months ago, I was struggling to do things like read anything, watch TV, follow recipes, you know, I just, I couldn’t really do anything, I couldn’t work out how to put stuff in the washing machine, or hang out clothes on the clothesline, I couldn’t organise the process in my head. Things definitely have got better, in terms of the cognitive, in that way.

I also joined a, a group for doctors with Long Covid, which was super helpful for me, actually, because there was so much information. It was just so good to speak to other people who were going through the same thing. Because a lot of the symptoms that I had in that third phase, protracted Long Covid, were bizarre, and difficult for other people to believe, I think. And they affected just about every system going. So, headaches – if I start from the top and work my way down – headaches and migraines, I had ongoing visual disturbance, in terms of the scintillations, the flashing lights, for quite some time. A change in ability to focus my eyes, as well. postural headaches, so headaches when I would stand up. A lot of postural symptoms, so heartbeat absolutely racing, there were times just standing up. I remember feeling so unwell when I stood up to just go for a shower, so that’s moving from one room to another, really, my pulse went up to a hundred and forty something. And it felt as if, there were extra heartbeats as well, so ectopic heartbeats, and a definite feeling of the heartbeat in my chest. I would also feel dizzy, at the same time. And I came to understand through this group that I'd joined, that these symptoms fit with a condition I had never heard of before, called PoTS, postural orthostatic tachycardia syndrome

So, essentially, it’s the autonomic system that has gone a bit haywire, and is causing symptoms, like the tachycardia, like blood pressure dropping, people call it brain fog, the brain not being able to work properly, particularly when you're upright. All of these things could be accounted for by this, so it was really good to discover that, because then I could look at what the treatments for that might be. So that did represent a bit of a turning point.

And I think, you can probably get a sense that a lot of this illness, because it’s all been new, a lot of it has just been me trying to work out what on earth is going on. And as a doctor, that has been really, really difficult. I can’t imagine what it would be like as a lay person. The neuro stuff, I thought had gotten better, so you know, the phantom smells, the tinnitus, I'd had some strange nerve pain, like a poker in my ear, really bizarre, but it was very, very painful. Strange kind of scalp sensations, as well, but all, all such vague and strange things, I didn’t even mention them to my GP, because I thought she might think I was completely mad [laughs]. So, I'd thought all of that stuff was behind me, and then at, probably, month ten, I developed peripheral neuropathy. So, I started getting ice-cold, and burning hot pains in my lower leg, and my feet, which was really uncomfortable. I also got it in my right hand, and my fingers, with some pins and needles, as well. And in addition to that, the initial leg pain, and restless legs at night, that came back at month ten, as well. So, I'm not entirely sure why it did.

You mentioned before your dizziness, Jamie is that…?

Yeah, that’s been kind of scariest symptoms for me, to be honest. It’s not like vertigo where the room’s spinning, it started off when I went back to work a few weeks later. I kind of just got this, it’s like you’re going to pass out that’s how it started, and it was like a, kind of like a pressure around my neck, I thought it was to do with blood pressure, or something. And it just generally, it kind of gradually got better but it’s like your brain and your eyes aren’t working in unison, that’s the only way I can describe it. It’s not like vertigo where the room’s spinning, it’s just like, if you turn your head too quick, it’s like your brain and your eyes aren’t quite working together properly.

And has that affected what you’re able to do on a daily basis?

It just makes me really anxious. I mean, yeah, on a daily basis, it kind of, it just makes you lose your confidence in doing things. Because you do get dizzy. I mean, I can still drive, I don’t really get it when I'm driving, it’s more when I'm moving around. It’s like, it’s just a really horrible, your eyes and your brain aren’t working together properly, it kind of feels like. I mean, I’ve had a CT scan of my brain, and that came back normal. I did an ultrasound on my heart and that came back normal, as well. So, I mean, nobody really has the answers to tell me what it is.

I was very fearful of going to hospital because the hospitals were full.
 
At the same time, as I say, my wife became ill so the pair of us couldn’t…couldn’t look after each other. She was extremely sick. She had to go into hospital briefly and when I rang up sort of the first of January to on the advice of one-one-one, we rang for an ambulance, and we were told there’d be an eight-hour wait for an ambulance. So, I had to drive her with a temperature of something like a hundred and three to hospital and leave her in a queue outside in the freezing cold at A&E. It was a sort of, you know, like apocalyptic scene.
 
It was at the height of the Kent variation and the height of the problems with hospitals, and it was kind of you know, it was frightening. So apart from the symptoms, the other part of it that was very predominant was the fear because…the fear of the unknown, the fear of having to go into hospital and fear of dying. 
 
You know, each day at that point there were nearly a thousand people dying and something like thirty-eight thousand people in hospital and being one of those people and being surrounded by media talking about it meant the psychological impact of that was…was very, very frightening, and for someone such as myself who had never suffered serious illness, you know, I didn’t feel well equipped to deal with because I’d never been seriously ill and my wife having the same thing at the same time, there was no one able to come into the house to help us. Our teenage son also got it.
 
So just the practicalities of getting food and getting people to drop stuff off for us, it was…it was horrible, it was frightening.
 
Yeah, so…so I think a combination of the psychological impacts of uncertainty and death and fear and everything that’s around you and the fact that medical science at the moment doesn’t have all the answers to any of this, which compounds that. And having been physically fit for a long time in my life, to have that experience of feeling so vulnerable was very frightening and that…and that feels like that’s going to be a lasting impact, I think, you know? It’s been a big scare and I still don’t think I’m fully, you know, recovered from that…from that scare. I think it’s affected my physical confidence and my sense of being indestructible and all of those things that of course we’re not.

So, I was extremely relieved to finally have a diagnosis and I did ask him, “What does post-infectious Covid mean? I know what the words post-infectious are, I know what the word Covid is,” but I said, “put these two words together, what does this mean for me?” And he said, “Well it’s too har-, too difficult and impossible almost to determine because everybody’s an individual and everyone’s impacted differently but he said to me that, you know, “You need some time off work. You need, you know, the fatigue is extreme, and it will be for a while, and you need to take care of yourself.” He was very compassionate and very caring and like I said, I know a lot of people do not have that relationship with their GPs, I’m very lucky that I do.
 
He referred me to a Long Covid clinic. He explained to me that it’s very hard to get access to one. He said, “I’ve referred you.” He said, “I can’t tell you how long it’s gonna be.” I still have not received a referral from the Long Covid clinic.  This is now, we’re now in June.  I was diagnosed in January.
 
So, the symptoms continued. The fatigue was extreme. I was sleeping all the time. I was out I was just out of it all the time. I was tired, I was coughing I just felt extremely unwell. I wasn’t able to talk very much. For some people that’s a blessing, not to have to list, not to hear me talk but there you go. So I was, just, I was not able to engage much or do much. I mentally, my mental health crashed.
 
At the same time, at the beginning of the pandemic I lost a cousin in Pakistan to Covid. And in one particular week in the space of 72 hours, I heard of ten people who are connected to me who had passed away of Covid across the coun-, across the UK. It was having a detrimental impact on my physical and mental health.
 
One of my dad’s closest friends a very dear Uncle to us, he passed away with Covid. He spent eight weeks in the hospital in [city] battling his life and he didn’t make it. It’s been very distressing for me and my family personally as I know it has been for lots and lots of people across our country, it’s been devastating. And so, the reason why I raised this, is on top of my own personal battle there were these other battles that were going on and all, if you piece it all together it was having a profound detrimental impact on me.
 
The consequences have been that I had to take two months off work which has impacted my livelihood obviously. Again, I’m very fortunate that I was able to do that. A lot of people are not able to do it. I have no choice to be honest with you but the same time there was an element of choice involved. There’s a lot of people who are not able to do this. I have nothing but respect for them having managed to just get through the day with a little support available is really quite incredible.

Yeah, and I was feeling so weak, and I felt so like...and then also because I'm a mother and I'll see my...some of the children having long symptoms, I think mentally wise that was pulling me more down as well, and it was very hard. It’s like I felt so useless and like no I'm not capable of doing something, because I wasn't well myself, I couldn't be there for my children, that I noticed as well, you know I just felt so bad as well that you know, and my kids are sick as well and I'm not able to look after them. 
 
And everyone was trying their best, but obviously it was just not a very nice thing what happened.
 
I mean this is what I personally felt because if you're mentally wise strong, you can overcome anything, but then when... if you're getting sort of down from every aspect, from your kids and the husband, that sort of brings you down as well, dragging you down as well, mentally wise as well and physically wise.

If somebody has looked at your lungs and they can tell they are not permanently damaged which is the case for me, so chest x-rays, everything, it’s all clear, it’s fine. There’s no fluid on there, you know, that’s all been checked, you know, once you’ve ruled out lung cancer, which is the slightly more terrifying kind of prospect, and then you have to think about, well, it’s damaged and affected me in a different way that nobody quite understands. And I mean, you know, I’m very aware of the importance of psychology in medicine, so, you know, I’m alive to the fact that some of this may be me things that would have happened to me anyway that I’m convincing myself are to do with Covid, that’s quite possible. But, you know, at the same time. So, for argument’s sake, I could have got late onset asthma anyway, but the fact really it kind of came seamlessly out of a set of chest problems that I had during Covid with no interruption to that, just slightly changing its form. It makes me believe that it is linked. So, it is tricky work because a lot of us who’ve been through it are traumatised by Covid, to a greater or lesser extent and so we may be attributing things that are nothing to do with it to it.

I say, five times, I felt almost five times, I could have died, and nobody would know about me. I could have died in the home, and nobody would find out about me in that. This is not the way to live and support somebody who is just alone with Covid at all. This can easily kill a person mentally and physically or you go the other way and come up as a stronger individual and in hospital, they have different people talking to me. Somebody told me, “You know what, it’s all in your head. You’re being a hypochondriac. You know, you go. You know, there’s nothing wrong with you.”
 
One of the person in the hospital, support staff, say, “You have no right to be here. You don’t have Covid because your Covid test came out that you are negative. You shouldn’t be here.” I say, “Look, don’t tell me why I should not be here. You do your job.” I say, “It’s not in my mind. Doctors thinks, it’s for doctors decide whether I am here or not. It’s not up to you to decide if I’m supposed to be here or not.”
 
That’s what I’m talking about and after I came out of hospital, last [inaudible], which I was, they found out I’ve fallen at home five times now. They were back very fast [laughs]. They put adaption in and then the hospital people, they put in the adaptation for me, and I’ve got push stool now. I’ve got a bath board, a couple of handles, in place to help me to get up. I’ve got the tray, Zimmer frame thing help me move around and walking stick to help me but then the community therapist came and because I could not do certain things, I was discharged, just like that. No more continuation. So, if I can’t do stairs, they can’t work with me. So, basically, means I’ve got no movement at all. The therapist in the hospital says since I can do those exercises, [great] exercise therapy because they gave me a lot of exercises and since I can’t do it and I get tired going to the hospital and that, they discharged me. So, basically, I’ve got no physio at all.
 
So how is that going to help to increase a person’s mobility? Seriously think about it. And I have to sort everything out myself and then, finally, I got because of this letter from my MP, they’re social prescribing someone. She got in touch with me. She was really helpful. So, for support and somebody calling me, a wellbeing officer is checking on me, make sure I’m alive, I don’t fall over. I’ve got a pendant alarm, which I press so in case of a fall, somebody will come and save me impact to help me feel secure at home. The social prescriber got in touch with Minds to check on me. And Age UK called to check on me. So, I got different people come and check on me, make sure I’m okay. And these are strategies that need to be in place if you’re looking at somebody with chronic illness and living alone.
 

Do you think that makes it more difficult, that you appear to be relatively normal to people, or some of the people that know you better, would they sort of be able to detect real differences?

I think people notice a difference in my attitude, a lot. I was usually a really upbeat kind of, bubbly, kind of up for a laugh guy, and I mean, I'm getting better now, [Interviewer's name] I feel. But the last year, 2020, I mean, I was just, I felt depressed. I was just constantly feeling not well.

And like, like people, the GPs, a lot of them were really great, and I think as they got drip-fed information about long Covid, they started to think, well these people are actually not well. I think a lot of them thought, I got told a lot of the time I was suffering from anxiety. Which I do think, I agree, I do have, I have got anxiety. But it’s the symptoms that are causing the anxiety, whereas they seem to think the anxiety is causing the symptoms, which is really frustrating.

And when you say people, is that the health care professionals you’ve been in touch with, or is that…?

Yeah, some of the GPs seem to think it’s all down to anxiety. And I’ll be honest [Interviewer's name], I think anxiety does play a part. But a hundred per cent, it’s the symptoms that cause the anxiety, which, maybe first, but it’s definitely not anxiety that’s causing the symptoms.

If you were meeting somebody who hadn’t really heard about Long Covid, or didn’t really believe in Long Covid, what would you most want them to know about the experience, Jamie?
 
Just how frustrating it is, Kate [name of interviewer]. Just, it is a real thing, and a lot of people are struggling with it. And it’s, it’s not just physical, it’s emotional, and it’s putting a lot of 
strain on relationships. Just that.
 
Yeah, so it sounds like it’s affecting all aspects, all aspects of your life.
 
Yeah. Yeah, it affects all, all aspects of your life, it’s not just the physical. I mean, that’s the worst part, I would say, definitely, it’s the feeling rubbish all the time. But it’s emotional, you start to feel better and then you feel rubbish again, and then you feel better, you feel rubbish again. It’s also the, the strain it puts on relationships with your family, because it makes you a different, I think it kind of changes your personality a bit, because you’re…constantly feeling down, and you’re not your usual self, and people, people in your family pick up on that, and it causes a lot of strain that, they ways, as well.
 
And are there times when you feel your old self coming back, or…?
 
I, like I said, at the weekend there, I was feeling a lot better. I feel like, I felt like my old self was coming back, and it, it just felt like it lifted everybody’s mood, a wee bit. And it was just like, this strain on everybody. It just, I think it just affects your whole family. It’s not just you, it’s, I think everybody picks up on it.

One thing that I haven’t spoken about is, I suppose the psychological effects of Covid. So, I do so with a little bit of trepidation, because one of the things that has been really difficult, about this illness, is that a lot of people have wanted to pigeon-hole it as psychological, Long Covid in particular. And when you're experiencing symptoms, when you’ve got a palpable tachycardia, you know, when you have raised inflammatory markers, when you have palpably sore joints, it’s really difficult to think that people might think that there’s more of a psychological element to it.
 
In saying that…I do understand there’s a psychological element to everything [laugh]. What, what I would say is, because the autonomic system is affected, for months and months, I felt like I was anxious, I felt like I was on edge, I felt like I was full of adrenaline, and I didn’t understand it at all. I now know that that can be secondary to PoTS, and that can be secondary to the dysautonomic symptoms, which gives me a bit more understanding, because logically, I wasn’t, I was trying to think, why am I feeling anxious about things, but I couldn’t give a good answer to that. I didn’t really understand why I would feel anxious, really, particularly when things were getting better.
 
It was only when I read more about, PoTS, and the dysautonomic side of things that, it made more sense. It’s just adrenal, overload, really, in saying that, I had tried to go back to work about six months into my illness, I'd had a good period of a couple of weeks, and I thought, well I was pretty desperate to get back and have some normalcy, for a really long time, and also felt very guilty about the fact that my colleagues were working really hard, during a pandemic, and I wasn’t contributing, so I, I tried to go back to work, and I just couldn’t do it, I felt ill, and my brain wasn’t working properly.
 
When I look back, I was still far, far too early, because I know that now from the symptoms that came after, that had a very negative effect on me, it made me worry about what the future was going to look like, was I going to get better. It made me worry, did I have permanent damage that was causing this, why, six months down the line, was I not able to do something that I would have done, really easily before. It made me feel like a failure, really, to be honest. I guess I put a lot of pressure on myself to feeling well, so to go back to work and not manage things, was really difficult for me. So, at that point, I did become depressed, because I felt so, upset, and guilty about the fact that I wasn’t back at work.

I’m trying to think of the other symptoms that I had; joints, fatigue, smell, taste, thyroid function, my hair; my hair sounds really vain, me mean moaning about it, but actually, in term of imp-, impact psychologically I am always wearing exten-, like a clip-in extensions now because my hair has just dropped. I’ve always had thick long hair. My hair is now non-existent, it’s awful. And that’s probably one, the most, vain impact but actually psychologically, that’s been a huge thing for me. I found it very depressing. And I think with the general fatigue and lack of movement, I think the weight gain, I have gained weight, and also, with the thyroid, obviously, the weight gain comes hand-in-hand with that. But, yeah, they are my main symptoms.
 
You mentioned a couple of times about your hair, it’s just not what it was. Is that something you’ve been able to have a conversation with your GP or anyone else about?
 
Yeah, I’ve obviously raised my hair, saying that, you know, alongside the…how I feel that my hair’s an issue for me. And it is, I mean, there are…I’ve got like a clip-in extensions in. My hair, if I take it out, looks like I’ve been fried or electrocuted. And it’s about two…between two and four inches long maybe, from my head. It’s like terrible. It’s awful. But, yeah, nothing.
 
I went to a trichologist and she said there’s nothing wrong with my follicles and the follicles are fine. But it just…I have it trimmed, you know, it’s trimmed regularly to, you know, cut away any split ends so that was why they did my bloods. But there’s no [pause]…there doesn’t seem to be any real acknowledgement of…or interest, I think is what I feel like. It’s not that interesting.
 
And actually, why are you just moaning about your hair? And like, it’s hair. That’s how I feel, like they’re…but actually to me it’s really important.

Do you feel kind of isolated from your life?
 
Yeah, massively. I’m on some strong antidepressants. I were, in the summer holidays I were suicidal. I were really and I didn't, I’d never experienced it. I’d worked with people who’ve suffered with their mental health, as a nurse. And thoughts were coming into my head, telling me, there’s no point in me being here anymore. And I thought, I need to tell somebody about this. And I didn't have any control of them. So, I started on antidepressant which helped and then, after a bit, it came, they came back again, and I were like thinking of ways that for it.
 
We’ve got a swing set in the garden that’s got ropes and stuff and I were imagining thinking, when they all go, I’m gonna strap myself up on there. I couldn't have done it anyway because I couldn't’ve even got there you know, I wouldn't have had the strength, but I knew that both feelings were not normal and so then they upped my antidepressants. And at the minute, I would just say, I’m numb. I’m numb. Until I talk about it like this, I don’t think about it.

Yeah, in a bad place. I mean, I never had any bad thoughts or anything like that. I was just, I just didn't want to do anything. I just wanted to be in my own little bubble where I could, if I wanted to be sad, I, I could just be sad without sort of explaining because I didn't know how to explain it. I just wanted to be on my own, if that makes sense.
 
Oh, it was like I wasn’t myself. It was like, I was a completely different person like I, I couldn't bring myself to talk because if I talked, I’d, I’d start to tremble, my lips would start to tremble and like my eyes would well up and I, I wouldn't know why. It just became-, it’s starting to happen now [laughs].
 
Oh, I’m sorry.
 
It, it was weird. I just felt, I felt like I just wanted to hide. I wanted to crawl under my duvet and be in like a black room and just hide from everything. It was not, not nice. But normally I’m really happy myself. I can speak to anyone—
 
Some days, yeah I fel-, well like I genuinely thought I was either going insane or I don’t know. I thought my brain was either shutting down or I was going mental or some days I was like ‘do I need to go to a psychiatric unit, like [laughs] what is wrong with me?’
 
Because it wasn’t a couple of tears, it was days of just non-stop, couldn't control crying and it was, I had these tears, and I had no idea, why these tears were coming out, if that makes sense. So, it was definitely, definitely unusual and I’ve definitely never felt anything like it before – ever.

It is and if I didn’t have my spiritual side. I would have fallen apart. Every time, you know when I’ve mentioned I have, I was close to having a breakdown, I would have had a major breakdown. In November last year I actually remember speaking to my doctor and saying, “I can see myself spiralling to a dark place. Help me.” Were my exact words, I think. And this was November last year and October this year. Having been through all that, I’m still waiting for that help.
 
Bear in mind that I’ve been told that they’ve had some sort of suicide and self-harm watch stuff written on my notes because of past mental health issues. To still think that help hasn’t come, I just hate to think what someone who must be in a worse place than me might have had to suffer.
 
Yeah. It’s not right…could you say a bit more about the spiritual stuff like, what is it that’s been holding you together?
 
So, I trying to make up time for myself and meditate so I’ll listen to like Islamic sort of hymns. And maybe try and concentrate on breathing exercises. I can’t do physical and stuff I do like basic stretches. But, when I’m doing them, I do this thing that I picture in my head that the pain is moving with that. And I’m drawing away vibes like negatives energy, negative vibes. And so, I put the incense sticks on, and I’ll have that, you know, a few candles maybe.
 
And I did this regularly and I’d sort of have really quiet, the kids are asleep, you know, and I’ll focus. I’ll close my eyes and I’ll focus that okay, there’s a negative energy and it’s slowly moving down my body, and I put my head down to my toes, releasing from my toes, kind of thing. And years and years and years ago, a very, very, very good therapist who’s actually suffering from a lot of mental health herself now because of old age. Which is really sad, but she was amazing, when I was teenager, said to me, she said a few things that I’ll never forget.
 
She said, “When you’re feeling like this, Raz, just think of yourself standing on, like a platform of the train, train platform.” And she said, “You’re on a bridge and the train is coming, now it’s up to you if you stop that. Think of that train as either a bad thought, negative thought or pain, whatever is bothering you at the time.” So, she said, “Whatever is bothering you, if its pain bothering you, ache, and just think that is going to stop there as long as you let it stop there. If you decide that it’s now the time for it to go, as you’re, as that train starts leaving, that pain or that negative thought or that ache or that tiredness, just imagine it leaving with, like that train is taking it all away.” And that sounds really like childish, whatever, at the time I really, do you know what, I found that really worked.
 
Sometimes I have to keep trying to get myself in that zone and keep trying it and the other thing that she said to me is, she said that, she said, because she knew my family. She had worked with my brother before, she said, “He’s very, when he when he talks about his religion, I sense a lot of peace in him.” And she said, “And when you talk about it I see that same in you.” And she said, “What I want you to do is all the things you like, like when you talk about your religion spirituality, I want you to note it down and I want every day be consciously, be aware of what time you’re at peace.”
 
And when I started doing that, I started, okay, okay, I used to get really stressful when I try and pray because the kids won’t let me pray, as you can see. I get really stressful at x, y and z. At what time am I at peace and it’s when I’m not trying to figure things out. I just have my prayer, instead of trying to do it myself. I have it on in the background and let the kids be kids. Let the noise just happen. Remove yourself if you have to but just focus on that prayer, just listen to it.
 
And think of that is peace that’s coming into your body, removing all the bad energy and, do you know what, it took me a while and sometimes it’s still hard, but I just sit there, and I think, you know, he’s watching. Some believe in him, some don’t believe in him but I will be rewarded for this. For every difficulty that I have been through, he can see it. At some point I will be rewarded, and I look at my three kids and I think, you know, when they’re got good health, they’re fine, they’ve got big smiles. They’ve loving it, they’re happy, that’s my reward.
 

So, kind of we...it’s like me and my wife, she cares for him and then I’ll kind of care for her where I can. So, you know hospital appointments and you know there’s too much going on with everybody with...within us, you know in the family, health issues from...from when my son was born, which was 23 years ago. So, you know it is distressing when you know you're suffering as well as everybody else is suffering, and it’s getting worse, affecting you know mainly the pain and the sleep.
 
For me it’s... it’s very hard, sometime you do get depressed about it but then I think when I work, the... you know when you're working, busy working or doing something, your mind is away from pain, yeah, or...or...or kind of worrying about your...what you're going through, and I think it is very important if you obviously are not able to work, I’d say that you volunteer somewhere. And I have been volunteering... and in...as an additional thing since we started Covid in 2020, we opened a foodbank locally.
 
So I’ve been helping with...you know, we’ve helped like thousands of families and you know whatnot, and until today, that foodbank now it’s actually...has become a community hub for the local people, so you know...so that...these thing keeps your mind you know away from... you could call it depression, but I don’t really call it depression, to be...well, to me depression it... it shouldn’t be there, it’s the worry basically. So yeah, so that...that...that’s what’s been happening at the moment.