Long Covid in Adults

Do you want to talk a little bit about what you think about vaccination as somebody who’s had Long Covid?
 
Yeah, I would be very keen to, actually. So that was one of the things that, as I was suffering from Long Covid, especially in the early kind of June, July time last year, it was quite disheartening to see young people and, and some other groups in the media saying that kind of vaccinations shouldn’t be done, it’s not needed, this is just a cold. It was very hard when you’re on the side-lines with Long Covid to think I would not wish this on anyone. I would never…I could never think that this would happen to me or to anybody that I would know, like it’s that much of a change in their daily life you wouldn’t think this was possible, and it was very challenging to see it in the media played as it’s just the flu or it’s just like a bad cold.
 
So I was quite keen to see the vaccinations take off and it’s been quite frankly annoying to not have been able to get the vaccination now knowing that some people have had a very positive reaction that have had Long Covid to having that vaccine in terms of their kind of body system, be it homeostasis, I’m not quite sure which ones are, are triggered, but essentially your body is reset and your body can then actually fight Covid effectively. And a good number are seeing a reduction in symptoms. Hence was the reason that I pushed with my, my GP to try and get me up the list. I know there was a small group that had a worse response to having it, but actually particularly earlier this year, I was at rock bottom anyway so that there can’t, there can’t be anything worse than this, so it’s worth the risk if I can get better.
 
Even now, physically I’m starting to improve, I would still take the vaccine tomorrow if there was an option. So, yeah…
 
And do you feel that that’s a relatively common view amongst the other people that you know with Long Covid? 
 
Yeah, so I mean, those with Long Covid and I think even speaking to friends and family that are now aware of what Long Covid could be like, there’s more of a, an understanding, yeah, this is definitely something that we should, should be getting on board with. I think the…I think it all relates to…if you’ve seen somebody with it, if you’ve not seen anybody unwell with Covid, if you’ve not had family members unwell, maybe you would be able to think it’s just a…it’s just a bad cold.
 
But the minute you speak to somebody that has had Long Covid or…or has experience of Long Covid, I think you suddenly see a change of heart and think actually maybe, yeah, if there’s no risk to me and I know there’s the…the blood clot risk from the AstraZeneca, but it’s, it’s minute in the scale of, of Long Covid, and if people knew the true extent of Long Covid there would be a higher rate of, of uptake of the vaccine.
 
The uptake has been high so far in older groups, but do you think that preventing Long Covid as compared with preventing infection with Covid just generally, do you think that’s had enough emphasis in the vaccination campaign materials?
 
That’s a really good question. Actually, I don’t think it has. I think it’s still been very focused on the initial infection, when actually like you say that Long Covid element of it, we look at the percentages of those that have Covid that go on to have Long Covid after a period of time, it’s still ten to twenty per cent are having it twelve weeks after. If you look at how many people were going to get Covid, that’s a huge number.
 
And I don’t think that that’s, unless you live it, unless you have Long Covid and see it from that lens, I don’t think people see it from that kind of second lens of, okay, you might get this other, this other syndrome or condition that comes with having it.
 

But it was interesting when I was, you know, in hospital, because there were so many different people saying different things. I maybe should have left the Moderna for a later period, but because you were going back to teach, you were wanting to have the full protection, and I’d missed my booster because I got Covid in the November. And I was due my booster then from the May.

So the last thing I wanted to do was have Covid and then go back to teaching and not have had my booster, so I left it the four weeks that we’re supposed to, but then…I’ve heard other people say, oh no, you should have left it longer than that now, but I…you did what you thought was best at that time and what was…you know.

And when you went in for the vaccine, did they check all of those things? Did they ask you questions about whether you…

Yeah, but then when I ended up in A&E with the chest pains, I was told at that point in time, oh, I thought it’s supposed to be six months before you have it, and I thought, well, could somebody please tell…tell us what was right or not there, because you’re getting different information there [laughs].

Yeah, and I also can’t remember if you said you’d been vaccinated or not?
 
Me, I’m not able to at the moment simply because I was-, I’ve been too ill. I can’t, And I’ve discussed this with the consultant, which he agreed, I’m just coming from-, where I’m coming from at the moment: not yet, not, I’m not anti-vac, but not yet.
 
Yeah. Have other people in your family been vaccinated? 
 
Yes, they have, well, they’re carrying on out there, so.
 
Yeah, okay. So, is it something you want to do in the future if you recover enough?
 
Oh, yes because it’s-, I’ve got mixed feelings about it. I think my antibodies, I’ve got antibodies to start with, so if I’ve got antibodies, it’s a, it’s something I’ve got to work out in my mind. I’ve got antibodies, so I do I need to be vaccinated? But if I haven’t got antibodies, you know? Will they know enough about it, about the vaccination? [inaudible] I will take it. But I’m not an anti-vax person.

So, I was very pleased to be offered a vaccine, I had the Pfizer one, so I it was very straight forward. I feel very relieved to know that I’ve been vaccinated. I feel very relieved that my mum’s been vaccinated, my brother, my sister-in-law. I’m, the children obviously in my family have not been vaccinated. There’s information swirling around that potentially some young children will be asked to be vaccinated. We don’t know, we don’t have enough information.
 
I feel that the, the entire vaccine rollout is really a testament to the NHS the NHS that the government has spent decades dismantling and de-funding and I think it’s quite shameful that this all been described as being, the governments doing a wonderful job with vaccinations when they’re actually, it’s got nothing to do with the government. It’s to do with scientists who have worked incredibly hard and all the teams working with them and then the NHS which has rolled this vaccination out in an incredible way. So, I feel that like that narrative needs to also be reset because the narrative that’s out there, is not a truthful one.
 
And I felt extremely relieved, and it was very easy, and I found it to be very an emotional experience actually to be able to go and to get a vaccination for Covid knowing that there are, the vast majority of people in the world do not have the same access to vaccinations. They are unlikely to get access to vaccinations any time soon and very horrifically you know, their life chances are being impacted so I found, I found it to be a very emotional experience.
 

Have you been offered your vaccine yet or not yet?
 
Yeah, I’ve had the, the, first one. We weren’t a special group or anything, it was just age, so yeah.
 
Did you mind saying how that experience was for you, how you felt afterwards?
 
Yeah, it was, it was, it was fine. I was…there was a lot of people saying they felt a lot better after the vaccines, so I had hopes I’d be miraculously cured [laughs]. But it hasn’t happened unfortunately. But I just felt like I had the flu. It was very much the flu, and that’s why it was very different to Covid. And people were saying to me, “Oh did you feel like you had Covid again?” And I said, “No, it was nothing like Covid.” I did feel shivery, and I did feel achy, and I had a day of that in bed, and then I had a couple of days of feeling tired, more tired than normal.
 
But like a different tired to the Covid tired, because the Covid tired is, it’s not like, it’s not like you’re tired with, with the illness; it’s just this fatigue that you can’t…It’s very hard to explain. It’s just an overwhelming, like I’ve said to people, it’s like a tsunami of…it just hits you. You cannot ignore it. It’s a wave that just comes over you, and if you resist it, you will make yourself very much worse.

Yeah, so I was vaccinated, and I had the first vaccination and I was OK, but then when I had the second vaccination...so my...the use of my legs and my right arm were OK. I had a set of symptoms from my Long Covid that were joint pains, the shortness of breath and all of the things that I had told you about previously, but then when I had the second vaccination I got really, really sick again with...I got Sinusitis first and then it spread down into my chest, I had to have antibiotics and I had to have two courses of steroids.
 
I was in bed for a...pretty much for about four weeks, but then when I did get up again, it was as if I’d had Covid but I couldn’t walk properly and I’d got...I lost the use of my right arm and it was as if I’d taken something out of the oven without oven gloves on and my right thumb was burnt, so something neurological had happened, so it was...literally it was as if I’d had some sort of reaction to the vaccination.

So, I would definitely say the symptoms were exacerbated from the time I took the vaccine because the Covid itself had drained me. Again, my family members some, some people bounced back within a couple of weeks, ten days, two weeks. It just felt that I was, I was always extremely tired, extremely tired. But it was not that long after that I actually had the vaccine when I was like, “Oh god. Now it’s instead of making me feel a little bit better in myself, this is awful.” Everything was exaggerated. And I did feel depressed, and I felt anxious. And I was constantly worried. And it, it, it was horrible. It was a horrible experience because I knew within myself it’s like, I, I don’t have anything to worry about that I have constantly have this worry. I constantly have this feeling. I was always anxious. My mood, like I said with my, in my marriage it affected, definitely affected my relationship with my children. I withdrew myself from social gatherings, meetings. It really changed the person I was.
 
And now I feel I was just so vulnerable, and I was just so, all of a sudden, I felt, god, it’s like I’m not, I’ve not been known to be an ill person, but that’s how I feel, I constantly feel ill. I think then when I had my booster in September if I remember correctly oh dear lord, it only got worse. It got worse. And then come wintertime which is generally a time where people might get depressed in winter anyway. It was awful. I would, I wouldn't get out of bed. I would just about greet my kids. Give them their food. Come back up. My husband was doing all of, you know, trying to watch the kids and to kind of run the house. And I normally go and see my parents at least once a month or what have you, you know, outside of Covid restrictions anyway. And they were like, “Come on, Ada, you’re always on it. You’re always meeting up and you know, we want to hear.” It was just, “No, no, don’t answer calls. Don’t want to speak to anyone. I don’t want to; I don’t want to talk.” It just felt like a place where I’m like, I don’t understand what this is.
 
Again, I tried to go to my doctor, “You have Long Covid.” “Okay, what shall I do about it? Where do I go? What do I do?” And I’m not one of those people who were looking into all of these, you know, is it real? Is it not? I’m 100% that Covid is real. And I was definitely, you know, go for vaccine. Go for it. Absolutely fine. Didn’t look into all of these, you know, online theories that oh god, it might be. And then it came to a point where I felt, actually I don’t know if it’s in my head, but I do feel worse when I had the vaccine. Each time I have it, it messes me up. Maybe it doesn't sit right with my balances. I don’t know if it’s hormonal or the way I feel. It just doesn't sit right with me whatsoever. But equally, medically, I was advised that because you have Long Covid, you are now registered as Long Covid. You need to take it and you will feel worse before you get better.

This would’ve been at the beginning of March, I finally had a referral to the cardiac clinic, prescribed me ivabradine, and I had my first vaccine. I went straight from the cardiac clinic to have my first vaccine. First vaccine felt like going through the whole thing, my entire year. And then suddenly I thought ‘oh, hang on.’ It was like the sun had come out like the cloud had gone from my brain. And I suddenly felt like myself again.
 
Stayed on the Ivabradine but I still felt you know something, there was a very concrete gear change, when I had, when I got the vaccine, first vaccine. Then it took about 6 weeks, then the vaccine bounce stopped, but by the time the second one came around again, and I had the second one in June, the same thing happened. And I was able to come off the ivabradine. And my heart rate is now normal, my blood… and I am able to do you know, kind of 5/6000 steps in a day, maybe even more. Cognitive effort still exhausts me, and I have a much lower threshold for becoming cognitively overwhelmed.

I think, then, a vaccine became available. So, I had, because I'm a healthcare worker, I got the vaccination, fairly early. I felt terrible for about a week, and then, started noticing things get better. The dysautonomic symptoms got a lot better, so the postural tachycardia got better, I didn’t feel unwell, and dizzy on my feet so much, I felt like I could think more clearly. Peripheral neuropathy seemed to get a bit better, as well. So, I was just delighted. And, unfortunately with this second vaccine, I had that period of, oh I think it was probably two to three weeks of not feeling great after it, in all honesty. But it really did trigger off the peripheral neuropathy, again. So, the first vaccine seemed to help things, the second vaccine, possibly less so. It could all be incidental, and coincidence, it’s really not clear. But on the whole, I would say I have steadily been getting better since that time, so that’s December, so five months ago. There have been blips, they’re probably not a linear thing.

But the first vaccine that I had was the best I think I’ve ever felt with Long Covid. I don’t think I’ve felt that good since I was able to get up and do, you know, I did this tentatively. I didn't just jump straight into it. But I was able to go for walks with my girlfriend and feel completely fine. No post exertion malaise at all. I was able to get up and do an hour deep cleaning. Not just, you know, surfaces, a deep clean. You know, and then with like rest just to make sure I was okay, no pain. Alright, let’s do it again. I, I didn't do that when I was healthy. You know, that idea of like you know, let’s really get stuck in. Let’s really sort of get this place sorted. Yeah, I, the first, after the first jab, especially the first couple of months after that was the best I’ve ever felt. But I think I assumed that was me basically well. I’m healthy now. I’m almost back and I can start behaving normally.