Razia

Brief Outline:

Razia is in her 30s and is Pakistani. She is married and has three children. She worked in government services and is setting up a business.
 
Razia found out she was pregnant early during the pandemic. She was concerned about the impact of Covid and the pandemic on her pregnancy. She caught Covid in January 2021 and was in extreme pain. Her baby also suffered from breathlessness. She is living with Long Covid symptoms, and finds the brain fog a particular challenge. Razia was interviewed in July 2021.

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Razia heard about Covid in early 2020, but ‘didn’t really pay much attention to it because it was happening on the other side of the world’. She found out she was pregnant with her third child soon after. She found the uncertainty around the impact the pandemic was going to have on her pregnancy care difficult. Two of her siblings also had babies during the pandemic, so they were able to share experiences.
 
When the first lockdown eased Razia and her husband decided to maintain a more cautious life, because they weren’t sure about the potential impact of Covid on Razia’s pregnancy or the baby. After she had the baby the country went into another lockdown. This was difficult because it meant she lost her social network – ‘everything around you changes, that support network can’t be there and you need them’.
 
Razia remembers that she and her husband felt ‘a bit under the weather’ in January 2021. A few days later she woke up in such pain that she felt like she’d been ‘battered with a baseball bat head to toe’. This lasted a few days and was like a ‘terrible flu’. Her baby also had some symptoms and was struggling to breathe. It was difficult to get professionals to take the baby’s symptoms seriously, but eventually a GP recognised that he might also have Covid and he was referred for further tests in hospital.
 
Razia’s husband recovered from Covid within ten days, but she was affected by longer term symptoms which lasted several months. Brain fog, breathlessness and fatigue were particularly challenging for Razia. The brain fog was worse than anything she had experienced before, saying ‘it’s not just forgetting why you’ve walked into a room or forgetting where you’ve put the keys, it’s actually bigger than that, it scared me’. She was frustrated with the difficulty of getting an appointment at the Long Covid clinic.
 
Though lots of life plans had to change because of the pandemic and the long-term effects of Covid, Razia was grateful that her children were healthy and happy. She took strength from her religion and listened to Islamic hymns to help her meditate and relax.

See more of Razia's story.

Razia said her brain fog meant “the most obvious thing just leaves the brain.” She wouldn’t allow her children to be in the kitchen with her when she was cooking because she was so anxious that they might get hurt.

And but I get major brain fog. I’m just going to bring my wrist in and quickly show you. I don’t know how clearly you can see that.
 
Yeah, yeah. I can see it.
 
Now anyone in their right mind would know that if you’ve put the kettle on, it’s going to get hot. Now but when I say brain fog, I don’t just mean that you can’t remember phone numbers, or you can’t remember whether you’ve done something, or you can’t remember why you came into the room. I get I get that anyway from having kids and, you know, like baby brain as I call it, but it would be those moments still, it’s getting less and less, thank God touch wood, but there’s moments still where the most obvious thing just leaves the brain.
 
And I remember when we had to take my daughter, my second, my middle baby, you know, [...], so we had an appointment last week in [city]. So, we decided to go there overnight so it was just easier, kids not fussing, what have you, easier if we’re already there and up and get a taxi to the hospital. So, we’re in the hotel, I put the kettle on, so I know it’s on, I put the kettle on and then I thought, okay, I’ll just put the tea bags in the cups, and it had just started the whistling stage, the kettle, and my brain didn’t function like nothing alerted me in my head and I literally, casually, just put my arm over the kettle.
 
And as soon as I, just to grab something from behind it, and as soon as I did it just squirted the hottest, boiling steam out and I spent all night with two buckets of ice on my wrist after I had had a long day with the children and my husband like, bless him, he could barely keep his eyes open but every, you know, twenty minutes or so he’d be like, “Okay?” I was like, “It’s all right. Go back to sleep. I’m fine.” No, I’m not fine, you know, but that’s just the most, the latest.
 
Over the last six months there’s been random moments where again, I’m cooking, I’m doing something and I, I’ll just be cooking and obviously when you’re cooking there’s hot things around you but my brain, the health and safety side of my brain, wouldn’t function. So, I burn myself, like I drop things, I hurt myself.
 
I’d forget how to do the basic things and so, when people talk about brain fog and then I tell, you know, it it’s like when you’re pregnant, when you’ve had a baby or when you’re a parent you might get it anyway, you’re, you know, even if you work long hours, you might be used to forgetting things. It’s not just why you’ve walked into a room or forgetting where you’ve put the keys.
 
It’s actually it’s actually bigger than that because, when you’ve got three, because it scared me. I said to my husband, I’ve got three little ones at home and, you know, he’s going to work probably thinking, “Are they safe with her today? Is she going to be all right?” [laughs]. Yeah, no, he’s right to but then the anxiety starts kicking in because I think, before I do anything stupid get the kids out the kitchen and I literally, got to a point where I was like, I’m not having the kids in the kitchen.
 
Even when I’m not cooking, even when no oven is on, no nothing is on, nothing is boiling, my anxiety would kick in. I get so anxious, I’d be like, no. And I’d look around thinking, literally, like cooker’s off, hob’s off, oven’s off, kettle’s off, everything is off. Right. And then I’m like, what else could they hurt themselves, what have I not done? I then start looking for things I might have got wrong because it was happening that often.
 
So, it was a bit of, it was a longer break this time, but it happened, and my husband says to me, “And you did not think that steam was going to come out.” And I was like, “It just didn’t even occur to me.” I was just casually grabbing something whereas, normally, you would not, I would not to do that, you know.

 

Razia was close to having a major breakdown. She remembered advice she had been given as a teenager which really helped her, alongside her faith.

It is and if I didn’t have my spiritual side. I would have fallen apart. Every time, you know when I’ve mentioned I have, I was close to having a breakdown, I would have had a major breakdown. In November last year I actually remember speaking to my doctor and saying, “I can see myself spiralling to a dark place. Help me.” Were my exact words, I think. And this was November last year and October this year. Having been through all that, I’m still waiting for that help.
 
Bear in mind that I’ve been told that they’ve had some sort of suicide and self-harm watch stuff written on my notes because of past mental health issues. To still think that help hasn’t come, I just hate to think what someone who must be in a worse place than me might have had to suffer.
 
Yeah. It’s not right…could you say a bit more about the spiritual stuff like, what is it that’s been holding you together?
 
So, I trying to make up time for myself and meditate so I’ll listen to like Islamic sort of hymns. And maybe try and concentrate on breathing exercises. I can’t do physical and stuff I do like basic stretches. But, when I’m doing them, I do this thing that I picture in my head that the pain is moving with that. And I’m drawing away vibes like negatives energy, negative vibes. And so, I put the incense sticks on, and I’ll have that, you know, a few candles maybe.
 
And I did this regularly and I’d sort of have really quiet, the kids are asleep, you know, and I’ll focus. I’ll close my eyes and I’ll focus that okay, there’s a negative energy and it’s slowly moving down my body, and I put my head down to my toes, releasing from my toes, kind of thing. And years and years and years ago, a very, very, very good therapist who’s actually suffering from a lot of mental health herself now because of old age. Which is really sad, but she was amazing, when I was teenager, said to me, she said a few things that I’ll never forget.
 
She said, “When you’re feeling like this, Raz, just think of yourself standing on, like a platform of the train, train platform.” And she said, “You’re on a bridge and the train is coming, now it’s up to you if you stop that. Think of that train as either a bad thought, negative thought or pain, whatever is bothering you at the time.” So, she said, “Whatever is bothering you, if its pain bothering you, ache, and just think that is going to stop there as long as you let it stop there. If you decide that it’s now the time for it to go, as you’re, as that train starts leaving, that pain or that negative thought or that ache or that tiredness, just imagine it leaving with, like that train is taking it all away.” And that sounds really like childish, whatever, at the time I really, do you know what, I found that really worked.
 
Sometimes I have to keep trying to get myself in that zone and keep trying it and the other thing that she said to me is, she said that, she said, because she knew my family. She had worked with my brother before, she said, “He’s very, when he when he talks about his religion, I sense a lot of peace in him.” And she said, “And when you talk about it I see that same in you.” And she said, “What I want you to do is all the things you like, like when you talk about your religion spirituality, I want you to note it down and I want every day be consciously, be aware of what time you’re at peace.”
 
And when I started doing that, I started, okay, okay, I used to get really stressful when I try and pray because the kids won’t let me pray, as you can see. I get really stressful at x, y and z. At what time am I at peace and it’s when I’m not trying to figure things out. I just have my prayer, instead of trying to do it myself. I have it on in the background and let the kids be kids. Let the noise just happen. Remove yourself if you have to but just focus on that prayer, just listen to it.
 
And think of that is peace that’s coming into your body, removing all the bad energy and, do you know what, it took me a while and sometimes it’s still hard, but I just sit there, and I think, you know, he’s watching. Some believe in him, some don’t believe in him but I will be rewarded for this. For every difficulty that I have been through, he can see it. At some point I will be rewarded, and I look at my three kids and I think, you know, when they’re got good health, they’re fine, they’ve got big smiles. They’ve loving it, they’re happy, that’s my reward.
 

 

While in A&E with her baby, Razia’s own symptoms caused staff to be concerned. An immediate CT scan was arranged and the specialist said it showed that “Covid has left its mark”.

But in the hospital, they were like, I walked in, again, I carried him in. Oh, we were in the room and she was, “Can we go in the corridor, I just want to weigh him.” And the corridor was literally, you open the room and it’s like five steps and then we brought him back and she was like, “See, you know, there’s been weight gain from the first visit. So again, we’re not worried about that.” And I was like, [whisper] [laughs]. And she’s like, “My god, you’re out of breath. Like five steps there and back.” And my chest was in so much pain. I was grey in the face, and she was like, “Okay, I know you’re here for baby but is anyone following this through? Has anyone seen you?’.
 
I was like, “Well, the doctor originally who sent my baby here did.” And while I was sitting there, she phoned me and she said, “I’ve spoken to the specialist, and they want to do a CT scan. Are you still at the hospital?” [Laughs]. I was like, “Yeah.” So, because they had by then, they had, I was just waiting for the discharge note for my little one, I then we brought little one home and then I went back and done my CT and he said to me, he said, “I can see that Covid has left its mark. It shows moderate.” And he was the first person to explain to me the different levels of Covid and he said, “So, you know, I think I believe, at this point, you should have been seen.”

 

Razia’s Long Covid clinic referral had not been a smooth process and due to misunderstandings in communication she missed her first assessment appointment.

In sort of March, they said, “We will do a referral to the Long Covid clinic.” That came through in June and again, it’s not going to be face to face. It’s going to be, it was a phone call, but it was a very brief phone call because some of the logistics, the referral, again the surgery wasn’t really a hundred percent sure what they needed to be doing and I think certain staff members, some people are struggling to get into work. So, the wrong referral was made so I’m now waiting for the actual appointment. Still haven’t had the initial assessment for Long Covid.
 
And then I got a phone call to say, your appointment will be on this day. We will send you a link, like you do, like yourself, and the doctor will do a video call with you. I said, “Fine.” I didn’t get that email. I didn’t get that email and so, in my head, I’m thinking, well, doesn’t have to be a video call. Maybe they might just phone me. Maybe I misunderstood, you know. So come the day, my husband has taken the morning off work and he’s at home with the kids so I can have this one-hour consultation. Come ten o’clock, nothing. I’m checking my emails. I checked my messages. My husband checked for me, nothing. And then about, so I carried on. I thought, surely, they’ll call me, you know. They’ll call me with the chap. Two and a half hours later I get a phone call saying, “We waited for you on the video call. You missed your appointment.” I was like, and you thought of ringing me two and a half…Why not ring me during my appointment and we could have had the chat? And I said, “I don’t have the email.” And she went, “Right.” So, she was like, “What’s your email address?” And she must have checked the outbox or something, I don’t know, items. She said, “I’ll get my secretary to do an urgent rebooking.” This was in June.
 
You still haven’t had it. Oh, I’m so sorry. Have you chased them up?
 
I don’t have a number to chase.
 
Oh really.
 
And I did speak to my doctor again. I said, “Look.” I spoke to her about something else and she said, “Is there anything else?” And I said, “I’m still waiting.” And she went, “Well, you know.” Nothing [laughs].

 

Razia was frustrated because she felt that her assessment had been made on the basis of what she can manage on a “good day.”

I done all the assessment and because there’s, “Oh we don’t focus on your illness, we focus on how it affects you.” “And you are.” When she asked me, she was like, “Oh, so are you still having Long Covid symptoms?” And I said, “It’s like waves, you know.” She said, “Tell me about a good day compared to a bad day.” And they based the entire decision on my good day. I mean I was set up with some of the questions where she was like, you know, “Or how else have you been having your appointments?” And I was like, you know, Teams, Zoom whatever and so she was like, “Oh so do you have Wi-Fi, are you able to use Zoom?” I was like, “Yeah.” And then the notes she put like well, you know, she complains about brain fog, she seems to be able to have consultations and she’s clearly telling them something and for, when you read that and you think, I just went through answering your questions, honestly, it’s difficult because I have had to do this a million times for a million different people. I live this day in and day out, to read that basically she’s kind of written there, yeah, well, you know, she uses the internet. She’s able to do Zoom meetings so she’s not that doolally, kind of thing.
 
It’s just, it must be demoralising, you put so much effort in.
 
And she put in there, she put, well, you seem to have been, you seem to be able to answer all my questions.