Graham talks about how life has slowed down and the impact of ptsd and long covid

um, how's life are you, um, coping with long covid? Um, it's been difficult. Um, just because, like, you don't know what you're gonna encounter from one day to the next. So some days you can get up and you can be feeling you can be feeling fine, but within, like, I don't know, a few minutes or a couple of hours, it can just change. So it's it makes it really difficult to plan things

And then you're also obviously you're waiting for support, and you sort of hoping that things get better, But you start realising that it's not at perhaps the pace that you thought it would be if you if that makes sense, yeah, sounds really difficult. So what are, um what are some of the support that you've been offered? Um, so I've got occupational help from Strafford, which has been really good. Um, and I've had some Is it? I can't remember what it's called

My memory isn't the best, is it? It's, um it's like coping, you know, like coping mechanisms. So I had, like, two sessions of that, but then I got diagnosed with PTSD. So then you've got to wait

Obviously, till somebody who deals with PTSD can see you. So I think losing as you know, it sounds weird. But losing that person that you were talking to, even though you were only talking to them for, like, two sessions, it felt like, Yeah, it felt like a bit of a blow

And then obviously you're left waiting for, You know, obviously you have fighting for the next support. Um, but yeah, And then I've had I can't do physio because of my heart rate. So I've got to wait for the cardiologist that has MRI

But one of the cardiologists left, so they're waiting for the new cardiologist to take over. So that's delayed, like, perhaps help with my heart. And the heart has been one of the things, because sometimes that can go like over 1 80

And if it does that, you've just got to sit down basically, and it can be quite scary. Um, so, yes, I think you You're also hoping that perhaps if they can sort out your heart rate, it might sort of ease some of the other symptoms that you're having. But I guess you won't know until until that solved or Can it be solved as the other thing that you think in your head? You know? So what What would you say? Um, so you've talked about that? There's a lot of waiting and and, you know, things aren't maybe very joined up

Um, and and you never know what your day is gonna be like. Um, what are some of the other challenges that you're experiencing? Um, in terms of, like, physical effects or whatever. Yeah, Um, it's difficult on the physical effects because obviously, I think sometimes the heart rate can take over, But then sometimes you can get, uh so I can get breathless

But I have inhalers help with that. But again, that seems to just come on and then want it. Can it'll lift? But it does seem when it comes on again, it's a bit scary because I didn't have any sort of breathing problems or anything before this or any sort of physical problems

But now it seems like everything that's going on is sort of like, I don't know, you sort of took I guess you took your help for granted really, before all this happened, whereas now it's trying to get in the mind frame that you're going to have sort of good days and bad days and, you know, work. So yeah, so it sort of And I think that's didn't has, like, a mental effect on you, where you sort of because you can't plan anything. I think you can get you down

So it's Yeah, I think it's Yeah, I guess there is some. There's a lot of mental effects as well to and also learning because I know one of the things that we're taught is that, um, we might not get back to where we were. And I think that's been really hard to accept as well, because you just you just think once you come out of hospital, you're just gonna get better and better until you're back to that place where you are

But now, like because it'll be two years in the end of April since I've come out of hospital. But it's like I wouldn't I wouldn't have thought that I'd still be where I am now, you know, from the effects of it, for I guess, Yeah, and I think I think as well it's probably it's difficult as well. I think for the health professionals because it's probably all new to them as well

So I think sometimes, yes, Yeah, well, in fairness, sometimes they will say that you know that it is new to them and, yeah, that they're learning as well. So I think it's, you know, I I guess it's I know it sounds probably selfish, but if other people had already been through it, they might not. You know what I mean? They might have

But I guess with being the first, you probably unfortunately, probably the getting I guess you've described so much change there and just so much to consider. So what does your day to day look like? Um, it depends because, obviously, if some day if it's if it's a bad day, like that's your day off. But then sometimes that can go on for a few days

But then, if you're having a good day, you might get a walk in. So but that's I think that's as well. What's find frustrating is so if you have a good day and you get a walk in and then the next day it might be a good day and you might get another little walk in

So you're thinking all right, it's heading in the right direction. But then, as soon as you've had a bad day, it's like you go back. It's like snakes and ladders

It's like you just you go right back to the start and anything that you've built up so you might have built up like, Oh, I was able to walk five minutes and then I built it up to 10 minutes, but it just sends you right back. It doesn't even it. It's like it like it's like if you had something else, you know that you can sort of when you go back

You might be slightly off where you were asked, but you'll easily get there. But with this it's just like you just pack at square one. And I think the beginning I found that really frustrating, whereas now I think I've sort of slightly got my head around it, that you are just if you have a bad day, you're back at square one

But I guess it's the uncertainty as well, then, because if you build up and you think you're doing well, you sort of I guess you're probably half expecting that you're going to have a bad period. And then, you know, you're just starting over again. But has there been anything that has helped you to manage that uncertainty and that and those difficulties? Um, I think obviously, the support that you get from occupational health, so to speak, um, to your occupational health officers helped

And I think my GP has been really good as well. So my GP will check in on me, so that's been good. Um, whereas at the beginning, I think I struggled with the GP because there wasn't much support

But the GP has been a lot more supportive lately, and I think that that has really helped as well. So like, if you can send a message to the GP and they might bring you back for a couple of days, But it's just the fact that they do ring you back and yeah, they are helping so that it has helped and in your family help, obviously. But that's another thing, I guess you sort of because before this, like you're out and you're working and you're doing things whereas now you can sort of feel like you perhaps a drain on people, you know? So it's Yeah, it's getting

I guess it's getting your head around that as well. So and, um, did you mention earlier that you were part of a group? Um, yes. So we're part of the so part of the IC U Group, Um, which I found out from the Occupational Health Therapist

And that was the one that was set up by the other person in our group. I don't know. Are you allowed to say names? I know

I think you you probably best to leave it out. So yeah. So, like, at the time, I was really struggling, and I think I was struggling so much because I didn't know anyone else that was in my situation, you know, I'd been tied to you and I come out, and I didn't know anyone

And then, um, just being tighter towards that group because it's not, it wasn't advertised. But then being part of that group really helped, because then it you were able to talk to people who've been through what you were through. Um, they might know all had the same symptoms as you, but some did

And then it was good then that you sort of found that people had symptoms similar to yours, but also that your fears that other people have the same fears as well. So I think it was It was good in that way because you did feel at the time you were sort of fighting the battle, perhaps on your own. But, um yeah, that group, it's definitely been like a lifeline

And then we get obviously, health professionals come on there and they'll talk to us. And that's been really good as well, because they'll explain what happened while we were in a coma. And what happens to your body, like in the prom positions and sort of what we're going through, sort of talking us through, Perhaps why it happened because, like, I've got no feeling in down on my right side

But they explain, you know, to you what's happened there and what's caused it, and then you're speaking to other people who have similar or maybe have Ed as well or a little bit of that. So that's been yeah, it has. That one's been an absolute life server, just in the fact being able to talk to other people that have been through that

And and then, um, because my partner, she, her friend's husband, ended up in IC u last year. But then when he come out, he's been able to join the group. But again, I don't know if he would have known about the group unless you knew somebody who was in the group

So I think that's it. But then it's obviously it's run by volunteers. So it isn't something that's everywhere, but I think it has been a life saver

So you do wonder how perhaps other people cope that maybe haven't got that group. Um, you've said loads of good things that you've touched over so many things is that is there anything else that you'd like to add? Um, on long covid or anything? Um, uh, no, I don't think that's thank you.