Helen

Age at interview: 38

Brief Outline:

Helen is certain she caught Covid in March 2020, but there was no testing available at the time to confirm this. Over time her symptoms fell into a “relaxing/remitting type thing,” where she would have some better days, but then experience flare ups. Helen was interviewed in October 2021.

Helen is 38 and lives with her husband and son. She works part-time as an Academic Researcher. Ethnicity: White English.

More about me...

Helen is certain she caught Covid in March 2020 (before the 1st lockdown), although there was no testing available at the time to confirm this. She says her symptoms started with a strange sensation “like there was a burning in my windpipe.” She attended a work event the next day and her symptoms persisted, although she wondered at the time if it was just indigestion. 

When Helen returned from the event she describes feeling “absolutely exhausted” but initially put this down to having been away with work. When her symptoms deteriorated further and she started coughing, experiencing an upset stomach and persistently high temperature, she thought “Okay, actually have I got Covid?” 

Helen describes the following weeks as like being in “this weird limbo” where her symptoms persisted. She says that although her sister and son  had similar symptoms around the same time, they got better. 

Helen tried to carry on with her daily activities and caring for her son, but found this more and more challenging when the 1st lockdown happened and once again her symptoms deteriorated, and she also developed nerve problems. She says “...our whole lives were just upended really” and describes the whole period as a “very anxiety-inducing time.” 

She initially took 4 weeks off work, but after returning she realised she would have to take a much longer period off due to her Long Covid symptoms. Around this time people started talking about what is now known as Long Covid and Helen describes this as being “like a light in the dark…this is something that happens to people, this is not just about me.”

Helen undertook various investigative tests to rule things out and says over time her symptoms fell into a “relaxing/remitting type thing,” where she would have some better days, but then experience flare ups. 

She says she had to get a lot of help and support from her family at the time as she was struggling to cope. She describes having had some cognitive behavioural therapy (CBT) which encouraged her to stop looking at online forums about Long Covid and helped her to develop some practical strategies to support her home life. 

More recently Helen’s been starting to feel much better and has been able to return to work part-time. Although she says she doesn’t feel completely better yet (and still has bad days), she says her family have adapted and adjusted to the situation. 
 

 

Helen has put practical strategies in place to ensure she is spending her energy on the things that matter most at home, including prioritising family meals and her son’s bedtimes.

So one of the things I was struggling with at the time was even just making sure we were all eating properly and that there was food in the cupboard and things and so we went through some practical strategies for making sure that there was and now we pretty much have it nailed in that there’s always food in the freezer so if I’m having a bad week and it probably sounds to your average person like, ‘why would you need help with sorting that out?’ but at that point at time, I was so, feeling so poorly and had so much brain fog that even just preparing meals felt too much so that was really helpful.

And also, just talking about activity so I walk my son to and from school and about ways to kind of build activity into my daily life so that, so that my life with my family was prioritised and it wasn’t someone saying, “Right you’re going to have to go and cycle for five minutes every day, find time for that.”

So, we all, we all manage to eat together during the week. So, I, obviously I was off si-, sick and then for the last year I’ve been working remotely predominantly which means that I’m in the house, so we’ve really prioritised kind of sitting down to eat as a family in the evening. Whereas before if one was running late from work we wouldn’t or me and my husband would eat after my son was asleep but now we make sure that we eat properly and I know it sounds silly but I found that I’ve had to really re-think the way I run my life and we’ve also, for me, I find it really helpful to make more of the kind of bedtime routine with my son because that’s an opportunity for me to rest.

So, one of the things I have to do is make sure I build in rest time. But sitting and reading books with him, sitting with him at bedtime counts as part of my rest time. So, whereas as before it was always like, ‘just get this bedtime out of the way’ tonight it’s my turn and I think ‘it’s okay because actually that’s good because it’s a good, because it will make me have a rest and just kind of relax,’ so there are some positive things [laughs]. But yeah, we’ve had to rethink things like we, we we’ve always had a cleaner, very fortunate to have a cleaner because we’ve got busy lives but now, you know, I let my cleaner do a lot more stuff than I did before. I let things go around the house that I wouldn’t have done before. I really need to clean my windows, but, you know, what, I’m not going to bother, I’m not going to bother until they’re absolutely desperate. You know, just adjusting expectations I think as a family and with, and I also found that so I’ve gone back to working slightly less than I was before so that I can prioritise family life because for me if everything’s smooth at home, if my son is okay then I can put what energy I have into my work but I have to make sure that is sorted out first or it just doesn’t, it doesn’t work.

For Helen, meeting other mums at the school gate became an important part of her day.

I’m very lucky but then socially, it’s really funny actually, my social life pretty much became talking to the mums at the school gate, so I really got a lot of strength from just seeing them in the morning and seeing them in the afternoon and not every day because my son does various clubs after school and after school club but that really kind of kept me going during the worst days. And actually they knew a lot more about what was happening to me than a lot of my other friends because I saw them every day, their kids were playing with my son and that was just so lovely and things have changed again because my son’s now gone into juniors at school which means that in the morning you literally just throw them at the gate and they go running in so I don’t see the mums as much and I do miss that but I have developed I would say over the last year some really nice friendships with those people who I come into contact with. It’s probably been much harder actually with the people that I was already friends with.

So I’ve got a couple of really good friends who have been great and really supportive but then I’ve got other friends who I’ve known since I had my son who’s perhaps a bit more sceptical about the whole Covid thing and wants life to go back to normal and we’ve perhaps a had a bit of a clash and people say thoughtless things like, ‘Oh, you know, we’ve got to learn to live with it like the flu,” and I’ll think ‘yes but that’s fine for you but my life will probably never go back to how it was before.’ I’ve had to, I’ve had a lot of kind of internal wranglings about whether friendships are working for me.

Helen was unable to attend her cousin’s wedding as she knew she wouldn’t then be able to manage her work and caring for her son.

And then, for example, my, my cousin was getting married the other weekend and I didn’t go because I wasn’t, I didn’t want to be around lots of people because I was worried about the risk of Covid but also, because I knew that during term time I would really struggle to do my work, have my son at school with the various activities that he does after school and all the things, spend the weekend away and then come back and work again, it just wasn’t going to work. And so that was, that was just a real shame but just how it, how it is unfortunately.

Helen says she’s not being able to be the parent she wants to be. She talks about trying to find “workarounds” all the time.

Yeah, and in terms of family life and what I found really difficult when I was feeling really sick and to be honest even now when I have a bit of a dip is not being able to the parent that I want to be. So, I just really try and find workarounds for that, so I’ve been getting my dad to teach my son to ride his bike. My husband might take my son out to do things so when I can be there, I’m there but when I can’t, I’m trying to find workarounds all the time so that so that he’s getting a fuller childhood. And something I feel really sad about actually that before the pandemic we would also be going out on day trips, I would take him on my own to London on the train, you know, we’d do all these exciting things, and I can’t really do that now unless we sort of really plan ahead and I have some help, and he doesn’t remember any of the stuff before the pandemic.

He’s 7 now but he was 5 when that started, just about to turn 6 and I’ll say, “Do you remember when we did this?” He’s like, “No, I don’t remember that.” So, I’m getting photos out saying, “I did take you to places, I did.” [laughs]. And actually that’s more of a challenge now that things are opening up again because whilst everything was shut down, I didn’t need to feel guilty because no-one else was doing anything but I’m now navigating almost a new challenge in how we run our family life because I want to take him to London to the Natural History Museum again but I’m frightened of getting on the train because of Covid and there’s only so much energy I can devote to doing that kind of thing if I’m also working and all these factors that just didn’t apply before.

Helen initially used online forums which increased her anxiety; on the ‘really good advice’ of her cognitive behavioural therapy counsellor, she decided to stop using them.

So, I was spending an awful lot of time looking at forums, looking ‘What is wrong with me? Why is this happening?’ And the problem with the forums is that you get an awful lot of people who don’t really know what they’re talking about but are very confident that they do know what they’re talking about in amongst the people who are just sharing their experiences and everything. And I was kind of finding all these kind of like leads about, ‘Oh it could be this or it could be that…’ which as a researcher was actually quite stressful because I was thinking I understand this a little bit and maybe I don’t want to read this. Anyway I had CBT, and what was really helpful about that was that it encouraged me not to do that, not to go on the forums and that was fantastic, that was really good advice and I’m so glad that I didn’t, that I stopped going on those because yes, I didn’t maybe see some of the leads about what could be wrong with me but it made no difference at all to how I was being treated and then the other thing which is relevant to this conversation that we’re having is that we focused down on my family life.