Greater Manchester NHS supported by Aqua, and People’s Voice Media have been developing approaches to supporting people with Long Covid. 

To help inform this work, our team have been working with people experiencing Long Covid as part of a series of Community Reporting sessions in which people have shared what it is like to live with the illness. We believe that stories are great ways of learning from one another and can be powerful ways of communicating. The stories people have shared with us has shed light on how Long Covid impacts on people's lives and what support would help people through it. 

This short film summarises some of the key learning and recommendations from the stories. 

frightens me to death. It feels 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. Um, it 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, um, I have dizziness when I'm lying down and getting up

Um, I haven't driven now for since the digital started. That's about a year. Um, I have no strength

It's 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, OK, 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. It was kind of a completely integrated, multidisciplinary team

They had all, you know, speech and language therapists who came and, um, taught to me about, Well, help me with speaking and would swallow in And, you know, that kind of thing. Occupational therapists who came and and worked with, uh, one of the things I I suffered with was really bad pains in my arms. Um, So they were with me with that physiotherapist coming in two or three times a day to exercise and get me standing and walking

Um, so, yes, Um, a psychologist came to to, you know, to talk through what? What had gone on and and whatever else. Um, So So, yes, that was, um that was fantastic. Um, sometimes it was kind of, like, just really can't be bothered

Um, but, um, you know, I improved. Um, Now I look back, I improved fairly quickly, um, under their help and guidance. And whenever I was walking down to the end of the ward, um, you know, within a couple of weeks, um, in actual fact, um, the so the end of the second week in January, um, I was well enough to be able to to come home

I would like to For someone to be able to say, Yeah, well, that's OK. That's normal. This is what you would expect

But I think I don't think they, you know, anybody really knows exactly. Um, how long this can take to to recover from? I don't know. I suppose it is very difficult

It's something that the new, um, and things are still developing, and a lot of people are out developing differently. I mean, even having a shower would send you back to bed trying to shower, Couldn't do my hair, uh, couldn't do anything. I wasn't who I was

Let me just remind you all that before covid I was working full time driving 20 miles to work 20 miles back, doing overtime. I used to work with two screens in front of me and talk over the phone. So, you know, like an account manager for telecommunication company, Um, and one of the best sellers in the company, too

I was, um, volunteering. Going to, um Her Majesty's prison and praying for with with inmates. I was singing in a choir

I was, uh, a traveller. Loved cruising and running the home. You know, it was absolutely gorgeous baking cooking, looking after her family and grandchildren as well

And now I'm a fraction of who I used to be. Um, at one stage, we just had a grandchild who was one years old at the time. When Covid came, he thought my way of communicating was coughing

Yeah, he thought when he saw me and I was coughing, it was a way of communicating with him cos he's never You can't remember me talking without a cough. 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 told 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 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 you probably getting, I guess


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