Family experiences of Long Covid

Yeah, when I'm off my medication it’s harder because like it’s like my brain’s sort of like, ‘oh my goodness, we need to do things for us to...’ but when I'm on my medication it’s a lot easier because like I can... my brain’s like a lot... like less active so I can figure these things out more, which is a lot helpful, like I know because like... there’s like the pain... like pain scale, but like between like one and 10 and I know when I need to...like and I know now because like... of like all the help I've been getting, but if I get to a five or six, I need to start thinking about, ‘can I do this?’ And that has helped a lot.

Harry: Yeah. ‘Cos she sort of gave the advice of cutting back the school days.

Interviewer: Yeah, okay. That’s good.

Mum: Why did she say that? What was the point of that?

Harry: Like the battery thing. So, like I have more like energy left in my battery to do sort of other things. So, it’s sort of levels it out, so I’m not doing like loads of activities during the week and then resting on the weekend. I’m sort of doing like things all the time. So, it’s not like a big difference over the different days of the week.

Interviewer: That sounds like a good way of thinking about it. It’s like almost how to manage your levels of energy.

Harry: Yeah.

Interviewer: And do you know when you’re getting tired? Does your body give you sort of signals of when you’re getting tired?

Harry: It’s mainly my legs that start aching.

Interviewer: Okay. Yeah and so what do you do when, when that happens?

Harry: I don’t know. I just, just stop doing stuff and just go and sit down or lie down.

Mum: What do we always say to you, what we always saying about your eyes?

Harry: I don't know.

Mum: You don’t know what we’re always saying. What do we say [laughs]?

Harry: I’ve grey stuff under my eyes.

Mum: We’re always telling you look, you look tired aren’t we?

Harry: Yeah.

Mum: ‘Cos we can always see it in your face, can’t we?

Harry: Yeah.

Interviewer: And I take it that’s something that wasn’t a thing before?

Mum: No. No. I mean with him you could always tell when he was ill, or he was going to be ill because you could see it in his eyes. And now we’ll see it maybe the end of the day. So, you have had friends over once or twice, haven't you. Do you wanna talk about that and sort of then how you felt afterwards?

Harry: Well, if I do sort of too much like I don't know just walk around a bit maybe like throw a ball to each other and stuff like that…I kind of feel alright during it. But then afterwards like the next day like I feel it more and I would get really tired and achy the next day.

Mum: Oh yeah, so he said sort of sleeping would be a blue activity. And then there’ll be green activities, which is like just sitting down and not even doing anything like not looking at a TV or anything like that, just sitting there, lying down. And then yellow activities would be like other playing with Lego and colouring and stuff like that. And then red activities was, so anything from watching TV upwards.

Interviewer: The walking and things like that?

Yeah.

Interviewer: And so was he trying to get you to sort of think about all of your activities and what they would—

Harry: Yeah. Yeah. About how many I’m doing a day. So I need to like, try and find some time to do yellow stuff and not do red stuff all day.

Interviewer: Have you been able, I know it’s not long since you had that appointment, but have you been able to use that information?

Harry: Yeah, I’ve done like a chart. So, I’m sort of doing two or three hours of yellow stuff a day.

And actually, we found that exercise made it worse. So, if he’d been particularly was something very vigorous it seemed to trigger everything and make the symptoms worse for days and weeks afterwards so lots of post exertion malaise going on.

Lots of boom and bursts and crashes after he’d done too much. And that applied to not just physical exercise but if he did a lot just talking to people or a lot of social interaction, too much noise. And if any kind of exertion tended to create a crash which is quite common in Long Covid. So, we were learning, that actually he needed to pace himself and that rest was his friend.

Yeah, yeah. So, it’s very up and down, it fluctuates. So, I think you know even day-to-day and if he’s having a good day, haircut and he’s had a shower, that was a lot for him in one day at the moment. So, yeah. So, the fluctuations, I think that’s quite a common experience in Long Covid as well and people can go months with feeling pretty well and then suddenly the symptoms will come back again.

I’m not sure for definite, but I think having sugar has, has kind of, I mean with the heart pains, I had like a decent intake of sugar that day compared to what I usually have, which is not really that much. And, and then my voice, and then, and then that night, or last night I developed these really strong heart pains which I, which in my head I’m looking to the, to the sugar, but I don’t know for a hundred percent cos I’ve been fine when I’ve had sugar before.

Absolutely. I feel that if I hadn’t used the Ayurveda in my life, even past. Before Covid passed me. Before Covid and during Covid, I wouldn't be here. I wouldn't be here. I know that for the fact. So, I feel that the, if I hadn’t had that in my system or not relying on Ayurveda, I would, my symptoms would’ve been more worse than what I had. I could, I could feel that. So, during this I feel, I feel, some people may have thought that oh, you are a Ayurvedic doctor, and you still got ill. I don’t look at that. I, I tell myself and tell them that because I’m this, I’ve survived and I’m coming up and getting there. So, where I was that bad and now who I am, I had a life-long journey in terms of recovery I did better than comparatively somebody else. I feel that.

And what sort of things do you do or take now?

Yes, so I made immunity powder for myself and for the patients who wanted it. So, I take that in the morning. And then to manage also my sugar level, I’m taking that. And then for the energy also for fatigue I’m taking different herbs. So, ginger, I would add more ginger in my water. And amla which is like you know gooseberry, Indian gooseberry, yeah. So, that has got excellent Vitamin C in there. So, it helps with the immunity and so, yeah, I try Ayurvedic ways to recover, yeah. But one more thing that I would need lots and lots of rest that I, I probably not doing that much because two things that, I feel if I, whatever I’m eating, if I’m not getting it used and digested that my sugar level will go up. So, for that reason, but my Covid is telling me that you need a rest. So, not, my body is saying, no Covid, but my body is saying that you need a rest. So, I would, I will rest for immediately I’ll just kind of yeah, that’s enough. But my body is saying, have rest, have more rest like that. So, it’s just ‘Catch 22’ which is—

Do you find that quite hard to just rest and not be doing different things?

At some point, I find it okay because it, it’s my house and it’s, everything is coming in the way I want it. But another thing is that it’s hard because I’m doing so many tasks and helping so many family members and all. So, like yeah, like I said, taking mum for appointments and all that as well.

So, you’re doing quite a bit of caretaking of other family members while also having to care for yourself.

Yeah. Because I feel that because I don’t want to let go of too much. Although like the boys are older and so 27 and 24 and 17. But I want to be there for them because, because I feel that was, I’m around if I give up on my responsibility then it becomes harder later on. So, I am trying to be there now and then.

So yeah, it’s less now, but things are a little bit more controlled and we obviously as a family have taken into consideration that there is fatigue, there is you know the shortness of breath, the different things, so we’ve kind of adapted what we do as a family to support her needs, so in order for her not to get too fatigued, we’re putting things in place all the time to make sure that she has those [inaudible], she has that recharge, so that it impacts school less.

And then obviously having the inhaler to support, because... because when she’s getting shortness of breath, she’s then... there’s almost an anxiety around it with, [breathes in] ‘this is happening, ohh,’ where now she knows, ‘oh, OK, I can take my inhaler, it’s OK, I’m resilient, I’ve taken my inhaler, I can do this,’ she’s a very can-do attitude, so I think when you bring it altogether, she is able to kind of you know, not have as much time off, but that is a work in progress from different things that everyone’s putting in place. So school are more aware of it and what she can do and allowing her the times that she needs. We are very much aware of it, so we consider what we’re doing as a family, and you know with... with having the paediatrician support, her needs as well, so yeah, it’s steps in the right direction.

Yeah, generally we’re all... because it’s just us we are just like a little team, so yeah, suggest... you know, they make suggestions, we discuss how we can get around it, what... you know, how long can we be at such a place for, what will we need, how will we do that? So yeah, it’s just like we kind of team decision. But yeah, I think just being open and honest with each other about the difficulties that are there and you know having the kids be involved in that, because they had their own difficulties, if we share that together, then there’s more option of a solution, so if we didn’t include them, we wouldn't know what each other was thinking, you know, ‘oh no, I really don’t want to do that today, I don’t feel up to it, I don’t think that...’ you know, or... I don’t know, there’s... there’s lots of scenarios. But yeah, generally we just... we are... we’re a little team that kind of discuss it open and honestly together, just whatever we’re planning really.

Literally, I said to you, it’s like lectures, and that sort of gave us a lot of building up as well [inaudible] and that is healthy you know mentally-wise, so they started doing that and they... yeah, that was a big thing for them as well, then... yeah, it helped them a lot then, but it helped me more and then allowed to help the girls, so... because I think if you feel it more, you're going to feel yourself more down that’s what I felt that experience, so I needed to let the kids know this as well, ‘look girls, we need to get on, I know you've got symptoms, I know you're not well, your father’s passed away as well, I'm not say... because all of you are experiencing different... in your own way, so we need to be as a teamwork, help each other out and this is how we'll come out of it.’

So, we were dealing with two things: with the Long Covid symptom as well and then with my husband’s death as well, that’s the only thing I will... you know that came to my mind and like you know that we tried to sort of cope with this. And maybe my story would have been different with just Covid, coping with the Covid symptoms, our story would have been different, but because we're dealing with a loved one going as well so it was like a big mission for us, so we were dealing with like two different things the Long Covid and Covid, and then a person going, really because of the Covid as well, so yeah, that was...Yeah, like a mixed thing for us, like a big bundle of something for us that we had to overcome through doing... doing different things that we had to do as a teamwork. I said, ‘look, we have to do teamwork, I know you're not feeling well, [daughter],’ I know they're sat there, because they was stressing me out as well, because I thought, ‘oh my God, like you know...’ but then when the doctor said to me this happens and it will take a bit of while to go away, so we thought, ‘OK...’ when we found out you know this is what it is, we... because it was very hard to get appointments with the doctors as well in those times as well, so then we had to keep a monitor on [daughter] as well, write down everything that... when she’s getting it, and what’s happening, and what she’s doing, what activities she’s doing at that time, so we used to tell her to relax yourself, take time, don't rush your things, don't walk to school.

That this is a big point for us as well that you know your son’s passed away, my husband, back then, well, and I was like felt like we were alive now, you know we... we're fine, we've come out of it, you're fine, everything’s fine, you know, thank God for that as well I think, it’s going to be that now, and we’ll sort of... and I said this will be a teamwork and we have to look after each other, be there for each other, because you're feeling pain you know, the other girls feeling pain in her, so knowing that you're going through a pain as well you should know what pain feels, so yeah, be there for each other, that will give a big support, and that will help you mentally-wise as well. I think that was a really strong point for us as well, there is... we must be a teamwork, to be there for each other, because you see there for each other, you get that confidence I think you can get better soon, and that confidence turns into happiness then, so I think that was a really big key stage as well for us, you know the long symptoms?

And every now and then they do say to me I've got this, but I do... I do... I don't want them to let me see more down so I do give them confidence: ‘[Daughter], now give me five, you’re strong girls, just eat your veggies and fruits, yeah, come on babe, you can do this,’ if you just put it in their minds and not feel it more, because if you... because the lesser that you go through it and then make them feel it more, and that sort of drags you down. [youngest daughter] feels it, [daughter], you need to say these words to them, to build that confidence in them, even though they’re going through it, but then you need to give you that confidence and mentally-wise support with this sort of thinking, yeah, we're getting you better, we're get you back, you don't have –, so that’s what my experience was and that’s what I sort of felt throughout the day we got it and then till now.

I said to her, ‘[daughter], listen to me, the more you think about it, the more you think of that life, divert yourself, when it’s happening that time, don't... the more you think about it, the more you're going to feel it,’ so that helped a bit I think just went to the girls, ‘the more you feel it, the more you're going to feel it, and just sort of drag you down, so try... when that’s happening, try to distract your mind, go and watch a drama, go and do something else, if you love reading, go and try and read, I know it’s kind of hard not to focus, but try and divert your mind, go out a bit for a fresh air, so those things are fought...’ let me tell this to the girls, you know, to help them in any way I can. I know there’s still obstacle be there but we're diverting something... you know whatever we can from... from doing that obviously like... do you understand?

You've got to try and do that in life, I mean it’s like them losing hope, you can't really lose hope in life, can we? We need to go on. We need to go and do...and then thank God eventually slowly, slowly this will stop. Because there’s one thing that helped us also in the beginning, we was like we were crumbling, because of... obviously because my kids are going through this, and the husband, and everyone’s ill, then praying, that was big major key for me, praying, and that gave me a lot confidence and then starts eventually... you know when I said to you that I mentioned to you I need to sort of shake off because I need to bring the girls back with that confidence, mentally-wise, you know and confidence, so I started praying and I told the girls pray as well, that gave us a big massive sort of... it’s like a big massive push to us like you know to come... like we need to get on now, that was a really big huge... honest that was be the best thing for us mentally-wise, and I said before, if you're mentally-wise healthy, your body automatically sort of recovers quickly, so that was a big thing for us as well...Because, praying it gives you so much hope and that confidence in you, that’s what I sort of need to do for the girls, I need to sort of bring them back as well, and now they've lost their father I need to look after their health, you know, so that’s the end.

Yeah, take each day as it goes by, but you know each day is like a new chapter for us. I said to the girls, ‘because we're going to be a teamwork now babes, you know each day’s going to be a new chapter for us, as the day goes... let’s take each day as it goes, health-wise, financially-wise,’ no, and as I said before I think it’s very important to be spiritually strong in these circumstances, so I prayed a lot, God honestly gave you that confidence. Because before when... when my husband passed away in the beginning it was like so much... it was like as well as it is man, you know? And so many people what’s going to happen to us next, but then hearing the message of the Quran and spiritually-wise, praying, it gave us so much strength and...and the confidence, that was amazing. I mean yes, ups and downs are there, the... that’s what life... life’s never going to be an easy road. And with spiritually-wise, I think it’s very important to be strong spiritually-wise to make you go through these aspects of life.

And what, we got a cat for them. We got two cats now. So, it’s like it’s a different activity now. So, they are after the cat all the time, you know. Running around with him. Playing with the cat. And it’s like giving them little, you know the mind is on different type like a different side, their mind is on different sides for the cat. They play with her all the time. Like a different, a different thing and maybe it’s their lifestyle is changing now. They’re taking the cat out in the garden. Bring him inside. Teaching him stuff. Playing with him. Making more fun and I think it’s their mind is in a different thing, like before, when they feel tired, oh, Tiger. We call him Tiger. Tiger is there, so they just after Tiger. They just sometimes they forget their pain.

Yeah, and he’s just after them all the time and, and he’s waiting all, all day, near the gate door. So, whenever they come he just, he’s so happy that they are here. He knows they, they going to give them treat. You know, one by one, he’s so clever. You know the cat’s there. He’s really clever. What he done, he go over to one of the, one of the child, he just stroke them and then they give him treat and he go to the next one, little child, but he give him treat. So, he’s after us for the treats, but he’s going around and around everybody’s giving him treats now. So, cat happy. My children is happy.

That’s very funny, yeah [laughs]. I think cats are very, very smart and they know how to get treats.

Yeah, yeah he knows and you know, my children they show him to raise a treat. And he, all day, he sits near the door. He knows that the treats are in there. Sometimes he starts opening the door that I need to take the treats out.

That’s very cute [laughs]. Do you think that having Tiger around has helped your children’s mental health?

Yes. It’s helping him, helping them a lot. Yeah.

How are they coping mentally do you think?

Because some of their mind is on there on Tiger and it’s like they do different thing. You know, sometimes it’s like I don’t prefer them to stay on the TV or playing the gadgets or go on the phone or go on the iPad, play the PlayStation. It’s like they’re naturally they are playing with the cat. Physically, they’re physically with the cat. They’re mentally with the cat like playing around like more socialising like, you know that as a, before they were socialising with their brother and sister, so now, in these days, they are as a, as a brother and sister, group wise, they are with the cat. And they are talking, they are talking with the cat. They are talking to the cat and it’s like you want this you want that and the children they are involving. I think, you know, some time we need to make changes in the, in the house, in the, in their lifestyle. You have to try. It’s like I, I tried, but I think it’s, it’s good for them.

Yes, it sounds really good for them. I agree. I think the change has probably been really good.

Yes, yeah. You know even me, you know, you know whenever I stroke my cat, he’s sitting with me next, all the time. So, when I were like stroking it was like releasing. You know, something is releasing from your body, releasing the stress. It’s like you feel calm, you know, after you, it’s like an animal, but it’s a main thing. It’s, it’s a part of our family now. Whenever I stroke the cat, I get stressed sometimes. I feel annoyed. So, whenever I catch my cat, I’ll stroke him and you know I feel really calm, really relaxed. It’s like cat is taking the stress, it’s the releasing of stress when you’re stroking the cat.

He makes me happy and stuff like when he’s with me, and the whole he makes me feel like happy, like he makes me feel not that scared and stuff when I'm with him.

That’s so nice.

Like... yeah.

Yeah, and what about if you're feeling unwell?

Like I stroke him and stuff, I stoke him so [inaudible], and I... he comes to me and like what’s it called? I... what’s it called? Like we will strokes... we... I stroke him a lot and then he... and... and I play with him.

Yeah, that’s so nice, do you think he knows when you're feeling unwell?

Yeah, yeah, yeah.

What about the rest of them, do you think he knows when your siblings are feeling unwell?

Nah.

Just you [chuckles]?

Because I just play with him some more.

Are you the favourite?

Yeah, most likely.

Mum: Excuse me.

Yeah, I'm not the favourite when my little brother’s around, or my parents.

Just of the cat?

Yeah, of the cat, yeah, 100% I am.