Frances

Brief Outline:

Frances is retired but has kept up some work for the NHS. She lives with her husband and has four adult children. She describes her ethnicity as white.
 
Frances is normally fit, well, active and a very positive person. She caught Covid in April 2020. After two years of having Long Covid, Frances now feels she has completely recovered from it. She feels ‘great’ and is doing all the things that she wants to do. 
 
She can now walk an average of 13,000 steps a day – whilst she was at her worst she may only walk 200 steps in a day - and can run around with her grandchildren again. Frances was relieved that she recovered quickly from getting Covid a second time in January 2022, even though she felt very unwell for 6 weeks. Frances was interviewed in May 2022.

 

More about me...

In April 2020, Frances experienced bad flu-like symptoms and a blinding headache. She has found it frustrating that she didn’t manage to get this confirmed as Covid, although tests excluded other things. After 5-6 days in bed and a week feeling exhausted, she felt better. A month later her symptoms returned. She was sleeping 18-20 hours a day, experienced brain fog, had a severe headache and felt really low. She had no enthusiasm or energy for anything. For months she might feel better for a couple of days and then the symptoms returned, which affected her mood. Her menopause symptoms returned for a while. 
 
Because she was working for the NHS, she was working more than she had expected to at that point in her life. In early 2021 things started to go downhill again. She had brain fog, very low energy and low mood. She stopped working and felt supported by her colleagues in this decision. Even though Frances caught Covid again in January 2022, she felt better again after about 6 weeks. After two years, she now feels she has completely recovered. 
 
Before she got Covid, Frances was active and played sport. She found the fatigue of Covid was completely different to normal tiredness. Even walking to the end of the drive or on an incline was exhausting and she couldn’t take a deep breath. A friend gave her some advice about managing her energy use. She started planning what she needed to do that day, prioritising what was important and asking others to do things she didn’t need to – “plan, prioritise and delegate”. She encouraged herself do this by thinking about how many ‘beanbags’ of energy she had each day. Daily tasks, like taking a shower, could feel like they used many more ‘bags’ of energy on some days than on other days. Recognising this helped her to understand how much or how little to push herself that day. She was anxious about pushing herself too hard in case it made her symptoms worse and she struggled with her very low mood. She has been well supported by her husband and friends who are health professionals. 
 
Frances initially felt like ‘a bit of a fraud’ because she hadn’t had a positive Covid test and hadn’t been ‘seriously’ unwell with Covid to begin with. She worried about using the NHS. She didn’t want to be a ‘burden’ whilst she knew the NHS was overwhelmed. When asking for help for her mood, she felt the GP was insensitive and didn’t really know what to do and was just reading off a mental health checklist. She felt that he didn’t take things seriously because she hadn’t been as unwell as some people with Covid. She was offered anti-depressants, which she didn’t think was the right thing for her. She left the appointment feeling that she had had no help. 
 
When Long Covid became more recognised, ‘a thing’, Frances felt reassured that she wasn’t alone in her experience. She clearly remembers the first time she heard someone talking about Long Covid on the radio. Frances feels that healthcare professionals’ knowledge and understanding about Long Covid is improving but is still limited, especially the impact of the overwhelming fatigue. 
 
She thinks that the general public haven’t recognised how long people’s Long Covid symptoms can last and how debilitating they can be. She is grateful that she had access to support and knowledge through her professional network and friends with medical knowledge and experience. They helped her to get information which others might not have had access to. She would advise others to be kind to themselves and not to be too impatient. She suggested they should try not to compare themselves to others, to listen to their body and manage their energy, to accept the highs and lows, and to find a support network. 
 
Her message to health professionals is that they should listen to and recognise people’s symptoms, including low mood, be reassuring and offer hope that things will get better and point people to resources or services that could help. 

 

Frances thought of her energy in terms of having a limited number of beanbags. Some days showering would use up six beanbags of energy and on other days it would only use up one.

And I think that one of the most helpful things, that a friend talked to me – I’ve got a GP friend who was working on the Covid one-one-one service advice, so she had read up a lot about these things – and it was this concept of, kind of, energy bags. So, every day you’ve got ten bags – ten beanbags full of energy – and you can’t make any more, so no matter what you do there aren’t any more ‘til tomorrow morning.
 
And I would wake up and instantly know whether it was a Covid day or not. And so, [my husband] was like, “Are you tired, you know, Covid tired or, you know, or exercise tired?” And it’s completely different, and I don’t know how to describe that feeling, which is just…it’s not like, you know, I’ve been rushing around playing tennis, going for long walks or whatever; it’s just complete lethargy, overwhelming fatigue and I would know that as soon as I woke up. So, then on bad days it’s like, well if I’ve got my ten beanbags and I…and today it feels like having a shower is going to take six of them that means I can’t, I really can’t do anything else by the time I’ve, you know, gone to the loo and eaten something. So, whereas other days you’d go ‘Oh that’s fine, you know, a shower’s only going to take one, so I’ve got some others.’ And that really helped me to manage.
 
And I think that reading and learning and understanding, I think a lot of the kind of previous post-viral advice had been, you know, ‘Push yourself, try and do a bit more every day.’ And I think that this time that the advice was really changing to say, ‘Do not—you know, listen to your body, do not overdo it because it is counterproductive.’ And that’s what I really felt. And that kind of gave me permission a bit to say, ‘You don’t have to…you know, come on, you know, get out of bed, you must try and do that.’ So, the beanbags concept really helped me.

 

Frances said it was “liberating” to able to say, “I don’t have Long Covid” but she thought a little bit of her would always wonder “Is this going to come back?”

So, you know, the gap between them will lengthen. The height or the depth of the trough, if that’s the way it is, will reduce. But it certainly went on an awful lot longer than I had hoped. And, and I don’t suppose…it’s only very recently so, you know, two years on I’m now well, you know. And people say, “How’s your Long Covid?” And I say, “I don’t have Long Covid.” And that’s a really liberating thing to be able to say now, because for a long time it would be ‘Yeah, it’s okay,’ because I always had a kind of anxiety or just kind of this gremlin is just sitting here waiting to come back again. So, you know, trying to book to do nice things or to go away or to do anything it’s like, ‘Oh I wonder if I’m going to be ill – will I be, you know, will I be up to it?’ So, a lot of the sort of enthusiasm, looking forward to stuff, you know, for two years was kind of tempered with, but what if I can’t do it?

Frances said she had very supportive friends and family but that her husband in particular had been “absolutely fantastic” when she was at her worst.

In case I don’t say it later, I think without my husband I’m not sure I’d be here at all actually [laughs]. He was absolutely fantastic. And it was really hard for him, because as well as being worried about me, it was just, you know, living with somebody who’s miserable as hell all the time is pretty debilitating and awful for him. So, you know, very supportive family, but particularly, [husband].
 
And also, for [husband], for my husband. So, I remember one point – we’ve got a veranda thing outside and it was quite a nice day, so I was lying there kind of asleep, you know, wrapped up in some rugs and then, and [my husband] came and then he suddenly was sort of sitting next to me. And I was going, “What are you doing?” And then after a little while he took my pulse. And I said, “What are you doing?” He said, “Oh I’m just doing some obs.” He’d been counting, you know, how often I was breathing and then doing…because he was just so worried about me so he’d rung [our friend], this very good GP friend of ours, and she’d said…because, you know, he’s sort of basically saying, you know, “She’s kind of flaking out and I don’t know what to do about it,” and I think he was really worried. So, she said, “Well, just, just quietly do some observations and check that she is actually breathing” you know [laughs]. So yeah, you know, I was really lucky that, you know, that we have access to people who have got those sorts of skills, knowledge and expertise.

 

Frances said she sometimes “felt like fraud” because her symptoms were intangible and not obvious to other people like a broken leg in a cast would be.

The other thing that I was really interested in you talking about was feeling a fraud. That’s again something fairly common that people talk about that we’ve interviewed, and you sort of said, you know, “People have been really ill, [participant name]” and I just wondered was that you talking to yourself or did anyone ever say that to you?
 
No, nobody ever said it to me. But that’s what I, that’s what I felt. [Clears throat], and I think, yeah, because of, because of the kind of lack of, of, of kind of, physical symptoms and manifestations – and, and I think it is true of, of lots of psychological and mental health issues, isn’t it? And, and, you know, I’ve been passionate about this for a long time you know, if you break your leg or you have cancer then you get instant sympathy from people because you can see it. Well obviously people have got cancer people don’t like to mention it. But if you’ve got a broken leg, you know, that’s a ‘oh, poor you, what have you done?’ and here you are given a cast or whatever. 
 
If you just feel awful or worthless or, or…and can’t function then it’s really intangible. And there is still I think a lot of ‘well pull yourself together.’ And, and, and I probably, applied or, or made assumptions about how other people were feeling about me, which may or may not have been true. You know, but yeah. I, I did feel a fraud because it’s like, well I’ve, you know, I’d really like to have, you know, a piece of paper that said, ‘you’ve had Covid’, and go ‘there – told you so’ and you go all…you know. And so actually it was a relief when I was talking to, to GP chums, in the kind of summer of 2020 and they were saying, you know, it, it…’the, the tests are not pure science, you know, and actually all the diagnosis we’re doing now is, is based on symptoms,’ you know. So, you know, tick, tick, tick, you know, yeah, you’ve had Covid, you know. And that was quite helpful for me, because, particularly because, you know, it was a late test and then they sent it to America and lost it. You know, so I felt kind of, felt robbed of that, affirmation of ‘this is what you’ve got.’

 

Frances said the public didn’t “have the first idea” about Long Covid or just how long it could go on for unless they knew someone who had had it.

It would be interesting to find out to what extent you feel that Long Covid is well understood by the general public, by health professionals?
 
No, I don’t think it is at all. I think for the general public – unless you know somebody who’s had Long Covid – I don’t think people have the first idea what it is. And again, I think that the impression of ‘long’ would be something that goes on more than a week or ten days, which is called you know, having, having Covid. So, don’t think the public has any perception about how long Long Covid can be, and the range of symptoms and lack of pathology that goes with it. And again, for professionals really, just because I think it’s still a bit of a taboo subject, you know. Loads of people have had—I mean, it was astounding, when you look at the infection rates you think, everybody must have had it by now, haven’t they, or whatever [laughs]. But there are still lots of people who haven’t had it, and there are people like me who have had it, you know, twice and some people have had it three times. But I think it’s—I don’t think people understand how debilitating Long Covid can be because most people don’t know somebody who’s had it I don’t think.
 

 

Frances talked about being accepting, listening to your body and being kind to yourself. She also thought comparing yourself with other was unhelpful.

What would be your messages for others maybe, going through Long Covid?
 
Be kind to yourself, I think. Be more accepting. So, I think always wanting to, to believe that you will get better, but try not to be too impatient about making it happen. And how you feel is how you feel, and I think there’s the kind of comparisons with other people are probably unhelpful, you know: ‘oh well, this person had it at the same time and they’re better and I’m not better and I ought to be feeling better,’ you know. That; all that stuff doesn’t help. Really to find those coping mechanisms; and for me, you know, the energy bag, beanbags was a really helpful way of being able to at least get to the end of the day and think ‘well, I got through today and I have done whatever it was that I sort of thought that I might be able to do without being poleaxed.’
 
Yeah, listen to your body, you know; if you’re tired go to bed, you know. Don’t, don’t try and do too much. And it will get better. And I think if you don’t have a support network immediately within a family or within other health professionals then keep looking until you find one, you know. There will be – now that it is a thing, – there will be somebody that you can talk to that will be able to help. But yeah, I think be kind to yourself, you know; even if you haven’t got a piece of paper that says, ‘I’ve had Covid’, if you present with this motley array of symptoms [laughs]. And it goes on for what it does then, you know, in a sense it doesn’t matter what you call it, you know. Giving it, giving it a name, I think helps, you know. But if it feels real to you then it’s real.