Lyn

Age at interview: 45

Brief Outline:

Lyn is 45 years old and is Malaysian. She worked as a mental health worker before she caught Covid.
 
Lyn found the pandemic very difficult, as she was far from family and faced racial abuse. She thinks she contracted Covid at work even though she took extra precautions. Lyn's Covid was very severe, and she needed to be hospitalised. She now lives with Long Covid. Lyn was interviewed in May 2021.

 

More about me...

Lyn says that the pandemic was hard for her because her South East Asian ethnicity meant she often was the target of racial abuse. She says that this was made worse by people like the Donald Trump labelling Covid as the “Chinese virus.” She faced several racist attacks from people on the street, one of whom accused her of being “barbaric” and eating bats and dogs. She felt that she was “not in a position to challenge him” and felt isolated from people who could help. Another time Lyn was on the train coming home from work and a man came up to her and said, “you are not allowed in here, you have to get off the train.” In some cases, people stood up for her, which was a reminder that “there is still hope in this crazy pandemic”.
 
Lyn also struggled with being unable to see her family. Her Aunt who lived in Malaysia had passed away from Covid, and she was not allowed to attend the funeral due to the travel restrictions. Lyn is saddened that “nobody could say a proper goodbye”.
 
Lyn caught Covid in April 2020. She came home from work and started to feel like something was not right. She was unsure at the time if it was Covid because she was being extra careful to not catch it. For example, she would wear a mask at work and wash her clothes after work. However, her symptoms started to get worse. She developed a fever, and her chest became tight. Lyn phoned her GP who confirmed that she had symptoms of Covid and needed to stay home.
 
Lyn felt “terrified” to be alone while she was sick, and at points worried that she would die. She suffered several falls, but none were considered serious enough for her to be taken to the hospital. Lyn felt “there was no help” at the time, and she struggled to access food and medication. She was given a food box but found the contents unsuitable to her Asian diet. Lyn relied on help from a neighbour and from a Facebook group. After one of her falls, Lyn was admitted to the hospital for almost a month.
 
Lyn has had ongoing health issues since recovering from Covid, including fatigue and hormonal issues. As a result of her long-term symptoms, she has not returned to work and now requires care support. Accessing and receiving care services has been frustrating, and Lyn has needed to actively seek them out. She reflects that: “if you don’t go to them, you are just a number in the system”. Lyn has found adapting to her new lifestyle difficult and has been “grieving” being unable to continue in a job that she loved. She has found speaking to a Buddhist nun to be helpful and appreciates those helping her get better at her own pace.

See more of Lyn's story.

Having Long Covid had been life changing for Lyn. She is only able to wash and dress herself with the help of a good support worker.

Today I got dressed up like this is because my, the support worker took effort to dress me up. They put effort to help me, say, “Okay. You do your bit, I do my bit. We do it together.” She helped me say, I washed my hair today, “Right, let’s do this together. I’ll put the blower on you, hairdryer on you, you do this part, while I do this part, okay.” “You use the power and you try to rub to take out the wetness while I do this part. All right, let’s, shall we change?” “All right, you try to do this and I try to do this with you.” “Right, how do you feel?” “What else do you, shall, what else do we need to do?” Than rather like, “okay, that’s it”. It’s being a positive enabler and that really makes you feel that you are not useless. You are an able bodied person. It’s more client centred rather than just doing what you want because you just want to finish the job. And that helps you make a shift in your mental and physical aspect and that’s important.

Lyn described pacing herself by aiming to do no more than three tasks a day.

So I need to do pacing, resting and be compassionate to my body. I only do three things a day to accomplish myself and, if I want to, one big task, not two. I will collapse. Like today, I did my personal care. I did a small talk with my, with my, [Name] my well-being coach for about half an hour because I knew I’m going to have a long hot day. My big task today is to talk to you longer. Another small task is to get my meal sorted and that is all in the Tupperware because I get ladies in the morning cut my vegetables and put it there. So that is important so that is what I do. 

Lyn appreciated the support she had had to do things that made her feel more like herself and less of a “prisoner” in her own home.

By allowing them slowly to go hand in hand to work with you, give them some level of accomplishment and view their self-esteem and moving forward. That is what we’re talking about and understanding, which is really important because now I could do a bit more than what I could do in April because I got the support. And I’ve been making people understand how to support me like in cooking, how to cut the vegetables, how to prepare my meals and telling social services what is the difference between putting a cold meal salad out or sandwich, to cutting the pak choi to carers? What’s the difference? In order for me to help with my meal prep because ready meals are all high, most of them, as you know, the sodium level is quite high and sugar content is not ideal, it’s Western food. But by eating a nutritious meal to help me, also allow me to lead a more meaningful life and that helps in recovery because when you have something to look forward to, you don’t feel like you are a prisoner in your own home and you have no control of your environment.

That is very important because I like dressing up. Dressing up make me feel better. Just putting on a simple dress than just stuck in a bathrobe all the time for weeks and weeks when my mum say, “You are the bathrobe queen.” I say, “Yes mum, sorry.” [laughs] It’s always the same colour. [laughs] So I mean these are things, simple things, even putting on a lipstick and lip gloss. I look pretty now. You know, it helps. I’m a girl, after all, you know. And it’s my, it’s my identify and that’s important and that’s why I said that I try to do thing with communication passport, helping them understand about my culture and don’t treat me like I’m a doll, you know. I’m not a doll. I’m a person.  Understanding how to make Chinese tea, you know. Many things in the way I like helps me and having a little control of my environment because that improve my mental health, communication, communicating with me and these are the three aspects and that’s very important for me, for person like me in chronic pain. It’s what I feel for me and because now putting things in more perspective, it helps me to see that there is hope. I have some control. I am not hopeless. I am not only a mere existence.

Lyn wanted a face-to-face appointment with her GP so he could see for himself how serious her symptoms were.

I talked, I have, I don’t get, my GP is all right because after I push him and at one time, I brought my friend and she is a biomedical scientist with me to see him to let him see her because I think from telephone he can’t judge how serious my condition is. So I’ve got to really make my friend, to take me for a consult, I say, “I want you to see me, look at me as a human.” Insists that he sees me so I walk through the door, when he saw me, then he really grasp the level of needs that I am having, how much I am struggling. I guess sometimes that makes a huge impact because a video call would be much better than a telephone call because you have more eye contact. You can see the persona, the person how it is.

So it’s like, yeah, you feel that more face to face would help people to understand your needs and

Yeah, yes.

And like, the extent of some of your difficulties. Yeah.

Yes, because now you see me, you know how I am, what I am like and how I am speaking and you can see that I get tired now, you can see that my breath.

And everything is getting more down.

Lyn’s home was fitted with equipment to stop her from falling but she was disappointed that she had no ongoing physiotherapy.

That’s what I’m talking about and after I came out of hospital, last [inaudible], which I was, they found out I’ve fallen at home five times now. They were back very fast [laughs]. They put adaption in and then the hospital people, they put in the adaptation for me and I’ve got push stool now. I’ve got a bath board, a couple of handles, in place to help me to get up. I’ve got the tray, zimmer tray thing help me move around and walking stick to help me but then the community therapist came and because I could not do certain things, I was discharged, just like that. No more continuation. So if I can’t do stairs, they can’t work with me. So, basically, means I’ve got no movement at all. The therapist in the hospital says I can do those exercises, [inaudible] exercise therapy because they gave me a lot of exercises and since I can’t do it and I get tired going to the hospital and that, they discharged me. So, basically, I’ve got no physio at all.

Lyn felt alone when she was so ill in hospital and people didn’t understand how terrible she was feeling. Having someone to check on her when she got home helped to ease her isolation.

I say, five times, I felt almost five times, I could have died, and nobody would know about me. I could have died in the home, and nobody would find out about me in that. This is not the way to live and support somebody who is just alone with Covid at all. This can easily kill a person mentally and physically or you go the other way and come up as a stronger individual and in hospital, they have different people talking to me. Somebody told me, “You know what, it’s all in your head. You’re being a hypochondriac. You know, you go. You know, there’s nothing wrong with you.”
 
One of the person in the hospital, support staff, say, “You have no right to be here. You don’t have Covid because your Covid test came out that you are negative. You shouldn’t be here.” I say, “Look, don’t tell me why I should not be here. You do your job.” I say, “It’s not in my mind. Doctors thinks, it’s for doctors decide whether I am here or not. It’s not up to you to decide if I’m supposed to be here or not.”
 
That’s what I’m talking about and after I came out of hospital, last [inaudible], which I was, they found out I’ve fallen at home five times now. They were back very fast [laughs]. They put adaption in and then the hospital people, they put in the adaptation for me, and I’ve got push stool now. I’ve got a bath board, a couple of handles, in place to help me to get up. I’ve got the tray, Zimmer frame thing help me move around and walking stick to help me but then the community therapist came and because I could not do certain things, I was discharged, just like that. No more continuation. So, if I can’t do stairs, they can’t work with me. So, basically, means I’ve got no movement at all. The therapist in the hospital says since I can do those exercises, [great] exercise therapy because they gave me a lot of exercises and since I can’t do it and I get tired going to the hospital and that, they discharged me. So, basically, I’ve got no physio at all.
 
So how is that going to help to increase a person’s mobility? Seriously think about it. And I have to sort everything out myself and then, finally, I got because of this letter from my MP, they’re social prescribing someone. She got in touch with me. She was really helpful. So, for support and somebody calling me, a wellbeing officer is checking on me, make sure I’m alive, I don’t fall over. I’ve got a pendant alarm, which I press so in case of a fall, somebody will come and save me impact to help me feel secure at home. The social prescriber got in touch with Minds to check on me. And Age UK called to check on me. So, I got different people come and check on me, make sure I’m okay. And these are strategies that need to be in place if you’re looking at somebody with chronic illness and living alone.
 

 

For Lyn, acceptance and taking things as slow as possible were important keys to her recovery.

I agree with you that it can be difficult to hope for like full recovery when there’s no full understanding of what that might look like.
 
Yes, that’s the reason why, even though I’m tired, once a month I do a video to show other people my journey. To hope to make a difference for that, you know, even though I am like this, it’s okay to not be okay. And I think the most important part is acceptance. Once you have accepted, then you have look at possibilities of moving forward in your life. It’s like the pigeon, you have a pigeon in a cage. Even though the cage door is open but if you are in fear, as the pigeon you will not fly out from the cage, even though the door of the cage is open. So, I’m hoping that I can give some motivation to people that, even, you are not alone. There’s a lot of us going through this and we will all support each other to get through this and there’s a lot of things you can do even though you are not in a good place and need help, there are things you can still do, and I hope that that will help others as well. It means taking things as slow as possible in life, yeah.
 

 

Lyn thought people expected her to look more disabled. Someone had said “I don’t see illness in you”.

People see you and say, “You look all right. I don’t see illness in you.” Because when people say disability, they expect a person to be always gloomy, in a wheelchair or basically, that’s what they look. If you say, “Okay, I lost my physical strength.” So, when they say illness, they say, “Okay, wheelchair, look gloomy, look unclean.”  That that kind of pigeon holing. So, when those people see me sometimes, they say, “What’s wrong with you?” But they don’t see me as me. They see, when they see the label, they only read the label and that’s very sad because I believe that even with fibromyalgia, I lose sixty to eight percent of my normal function level but, hopefully, in the first two years or three years, if I can prepare myself, engage myself, hopefully, I know I set a very high standard me being type-A Asian person, will hopefully get back fifty percent [laughs].

 

Lyn explained to her mum that managing her Long Covid was “all up to me.” She thought people couldn’t understand how ill she was because didn’t “look like a different person.”

So, basically, a year now I’m still not functional as much as I want to be and it just take time and she keeps saying, “There must be something else that can be done.” I say, “No, mum, it’s all up to me managing myself and me managing my medication and me being a part, we have limited capacity to do things and we have to accept that.” It’s very sad now because I am quite disabled. And I’m young. I’m not old. I don’t look like a different person. It’s like a hidden illness which, because when you see a person or a person like me, they will say, “How could possibly anything be wrong with you?” An expectation of the community of perception of how disabled or chronic person will be. They have to look miserable. They have to look not well dressed, you know, they must have maybe a wheelchair on or drips or something, I don’t know. You know, that’s the kind of look they are expecting but when they look like somebody like me, they can’t put it together that that’s how I am.