Tina shares her experiences of long covid
Transcript
like before. You OK? Um, before covid, um, I used to do a lot of swimming and a lot of walking. Um, I used to make a lot of, um themed cakes for people. Um, I used to do a lot of, um, cooking for people
We used to be very sociable, having people around food and days and a lot. A lot outside in the garden. I don't do them things
Now, Um, for what? I haven't got the energy to do it. Um, the thought of actually going back to swimming in a pool with a lot of other people, um, frightens me to death. It fills before the terror
Um, since I had covid, um, in March, April 2020. Um, I have constant headaches. Um, going upstairs is is just exhausting
Um, I have this cough. Uh um, it's all the time. Um, I still have no smell, no taste
And I get hot sweats like I'm going through the menopause again, which I think really weird, considering I was 40 when I went through the menopause. I'm nearly 60 now. Um, I'm so tired all the time
I don't sleep asleep. Maybe 2 to 3 hours a night. Um, and that is not continuous sleep
I wake up because I think back, I dream about how I was feeling when I had covid with the constant coughing and not being able to breathe. And, um, I have a lot of anxiety. No energy
My, um I was having C BT and occupational therapy and, um, physiotherapy. And because of my lack of sleep and my lack of energy because I'm not sleeping, they didn't feel they didn't feel as though they could help me because I couldn't participate correctly because I wasn't getting the sleep. I needed to participate in those things that they would try to do with me and for me
Um, so that's been now stopped. Um, I have dizziness when I'm lying down and getting up. Um, I haven't driven now for since the digitally started
That's about a year. Um, I have no strength. It really weird
I have to pass somebody a bottle to take the top off, because I I can't grip it properly anymore. It's I I thought that was just me until, um, I started speaking to people. Um, last week I thought it was just me because I haven't been out doing the things I used to do
I didn't realise that was a part of the symptoms of long covid. Um, I don't go out if I can help it. I seem to hide away
I seem to have become a recluse more than anything now, because I can't trust people, or I can't trust not getting a covid again because I know we can get it again. I don't know. No matter how many jobs we have, you can get it again
And that frightens me. Really frightens me to actually go through that again. Um, I've accepted really in my head that I'm not going to be the same as I was
What I've not accepted in my head is why or how these things are still happening two years down the line. Um, I find life pretty scary at the moment. Yeah, it's hard
Yeah. Do you Do you sleep in the day? No. I try and push through to try to sleep at night
Um, I found if I started sleeping in the day and I was up all night, um, which then I think the dark makes things worse. so being awake at night in the dark? Yes. Yeah, absolutely right
It makes you think, um, things that you don't want to think. Yeah, the that. If it if it helps you not sleep in the day is absolutely the advice of anyone that, um, run, you know, is in the world of managing fatigue
So that's that's a really positive thing. And everything you just said completely resonates with me because I feel it, too. And I've been in similar places
Um, yeah. What do you think you can do? I don't know. I don't say what
What are you doing today or what do you want to do tomorrow? Mhm. No, I Until I wake up in the morning. I don't know how I feel, so I don't make plans
Um, and that must be really frustrating for him. Um, well, also, that's a very it might be frustrating for him, but and it might not. As you said, it's frustrating for him
No, no. Um, well, maybe it isn't. Maybe it isn't
Maybe it's you just thinking it is. I mean, you know what? If you've got a condition where you w w where how you feel varies from day to day, then. Actually, the best thing you can do you've only got two options, haven't you? You either get up and then plan
Or what you say to people is that I will plan to do this with you. But if I'm not up to it, you've just got to respect that because I can't guarantee how I'm gonna feel. So it sounds to me like you've got a good approach to that, you know? I mean, you've got those
You I can't think what other options you. Well, the third option is you commit to doing something, you can do it and then guess what it breaks. You ruins the afternoon or whatever, and you're back to square one
That that doesn't sound very clever. So out of all the choices you've got sounds to me like you're making I think there's two routes you could possibly follow and you're you're choosing one of them. And you, you you do what I do
I what I different. What I do is the other one a lot. I do a combination, Actually, one is
I'll see how I feel. And the other one is that I'll put in a diary. But if I'm not up to it, I'm not up to it
And you just gotta accept that. Yeah, Um, that's difficult, though. With work
Um, no. Works different. Works absolutely different
What? You What What are you doing? I'm not working at the moment. I actually work for the NHS. Um, so I've been off
I've been off work since, um, May last year. Um, I was working from home, which I could cope with because it was at my pace. And I wasn't with people
Yes, yes. Um, and then they decided that, um, I no longer could work at home, and I had to go back into work. Um, yes, which I found very bizarre, because at the time, it was, uh, work at home, if you can
And I have been working at home for quite a while. Well, I think there are. I think there are different conversations we had with different people
And you know what? You can't say all the dragons at once. Can you? You You know, there are how can you make your home life more effective? And then there's and what do I do? And How do I engage with work and to crush them together and look at both of them at the same time? Must be very difficult. So maybe trying to, you know, split them apart and have different strategies for them
Yeah, yeah. Um I just I When I actually think of actually going out to work and travelling to work and sitting in work and being with people my mind just I I I can't fathom in my head No, no, and and And somehow, you know, I I I've felt not the same But I felt very similar to that. And I guess I I think that journey for me
When people first told me I had anxiety, I completely pushed against that because I just that wasn't me. You know, that was something that it just wasn't me. And and over the last two years, I've understood actually what that means, and I totally accept now that I do have anxiety and it's taking me and I'm not trying to talk about me over 18
I'm just trying to share the experience, but it's taken me 20 months to understand that actually, one of the biggest issues I've got to deal with is the anxiety, because that's actually driving my fatigue, driving everything else. That's negative. Not entirely, but to a degree
And it's taken me 20 months just to be able to work that one out, partly because I wasn't in a place to work it out And partly because, you know, it was something I was rejecting as a concept. So I don't know if that's got any resonance for you, because I think you need to. It's hard to accept, you know, we have You've got all these roles, haven't you? You've been this worker
You've been this, you know, partner to your husband and other roles you have in your life. And you know what you're going through now challenges all of those, doesn't it? From what you said? Yeah. I mean, mentally, I'm not even strong enough to to go in a room with people, or I I just can't It it just feels in full of fear
It really doesn't it? Yes, yes, yes. Well, maybe, you know, may maybe you need to just, You know, I just wonder if for all of us if we look at what the things we are suffering from, and rather than group them together, you know, can we separate them? And what's the biggest thing that influences all of them? And how might we deal with that? Because, you know, it's This is a long, hard journey. You know, it sounds like you've had it really hard and, you know, I don't know
That's it. There's no ending. So it's not like you have a cold
You think, Yeah, I'll be over that in a couple of weeks. Um, I I it's that there's no he's like you can't so good you have That feeling is this is me now and I can't help that anymore. But I don't want to be with me now
I want to be what I was before, and I know I can't. Can you change? You know that no end in sight. Can you change that view that you have? I actually don't think I can, right
And at this moment, I just I don't know. No, I I know how I had I had the same to you. And I can quickly get reengaged to that same view
I try not to think of it that way anymore. I try to think of it a different way. And, uh, what I try and do is just think about today and do my best in this day because I find that looking back makes me depressed about what I've lost and looking forward fills me with anxiety because I think I'm not getting better
But actually, I am getting better. It's just that it's way slower and I'm too close to the tree, so I can't see it, you know, Are you? I mean, if you were to concretely look at how you are now to how you were a year ago. Do you think you're better or not in any way? No
I think that that I'm exactly the same, right? OK, mean, it's really weird because, um, I was having a conversation with, um, a health professional. And it's about I still can't taste and still can't smell. I'm like, what? Does that bother you? Well, yeah, because if I have a gas leak, I can't smell it
And if I'm cooking, I can't taste it. So I don't know what it's like for everybody else. I'm making a curry
I can taste it when it's really really hot, really hot. It's got to be. It does bother you, isn't it? And I was thinking, What questions? To ask somebody
Does it bother you? Well, you know, maybe it's not a stupid question, because maybe, you know, in the list of all the things that we all have wrong with us, it's about prioritising what you start with. Is it? It May was maybe her objective, you know, because I don't think you can slay all the dragons in one go. I think you can pick on one thing and say so
In my case, I'm trying to build my muscle back still by walking, and I'm trying to manage my anxiety a bit as well. Um, because I recognise that gets in the way for me, and it's a completely new experience to me to even feel that you know so but there's a whole host of other things that bother me, but I've just chosen to leave with those two things to get to go to the biggest bonfire. First, I think, is what I'm trying to do
And I just wonder if you know, I wonder if that was she was suggesting, and I wonder if that's something that might work for you. Provided you, you know, you get the right information. Because, of course, getting the right information is hard, isn't it? And then it's hard to actually
I was told this by an occupational therapist 18 months ago, and all I did for the first three months was reject it entirely until it wasn't me. I didn't want to listen. Really
You know? Yeah. Anything else you want to say, Tina? Um, I don't think so. Um, it's just like you said
Just put things in your head. It's like you got to worry about work. When are they going to turn on and say Right? That's it
You know, you can't come. You can't come into work because of your illness. But we can't keep paying you because of and it's out of things that way down on your head
They do. They do. Um, I mean, worrying takes away from all of us, doesn't it? Um, I think if you if you're able to get some in, are you part of the, uh, maybe if you were able to get some information from an independent body, then maybe you could start to planning around the detail rather than worrying about what they might do
Maybe that would put you in more control. Yeah. I mean, I've got the the union, um, supporting me, which I need to have a conversation with her on my own instead of only with work
Yeah, So I think that that's got to be my next step. OK, well, that's good. That's good
Anything else or should I stop recording? Um, I don't think there's anything else. Um, no, I don't think so. Not at this moment
No. OK, I will stop.