Golda

Age at interview: 53

Brief Outline:

Golda is 53 and lives with her husband and 3 children. She has a further 5 children who have left home. Ethnicity: Jewish American.
 
Golda caught Covid in December 2020 and she says around this time she had no idea what Long Covid meant as not a lot was known about it. Golda says that her Covid and Long Covid experiences has affected her “tremendously mentally.”. Golda was interviewed in November 2021.

 

More about me...

Golda caught Covid in December 2020 and she says around this time she had no idea what Long Covid meant as not a lot was known about it then. When Golda was discharged from hospital after her oxygen levels improved she was told to rest for 4- 6 weeks in bed at home.
 
Golda says she feels “very blessed” to have such a supportive family and community and says that around this time, she didn’t have to do a thing – “I literally did not have to leave my room and I didn’t.”
 
Golda says she was surprised when the GP called a couple of weeks later and asked if she wanted to be referred to the Long Covid clinic. She had thought that you had to have symptoms for 8 weeks to be considered as having Long Covid and remembers saying to the GP at the time, “Don’t curse me.”
 
Golda describes experiencing multiple infections over the subsequent 11 months and regularly needing antibiotics. She’s had singing and breathing therapy and has tried various alternative and complementary therapies with little success – “I just cannot encourage my breathing pattern to change.” Golda suffers from ‘brain fog’, fatigue, memory loss and heart palpitations and believes this is linked to her inability to take in enough oxygen. She also experiences gastric issues and swollen optic nerves.
 
Golda had to go back to A&E after about 6 weeks being back at home and says she “wasn’t mentally prepared” for the traumatic experience of returning to the same hospital and had a “full blown panic attack.”
 
Golda says her experience with Covid has had a big effect on her family. She says that “they had to come to terms with this mother who’s so active and so like able to do everything…” to someone who became so weak and sick and who couldn’t do the things she used to do like buying in food and cooking. Golda says that her Covid and Long Covid experiences has affected her “tremendously mentally” particularly as she’s not felt able to return to work.
 
Over time, Golda has managed to grow mentally stronger and she says that she credits this to her faith and also the supportive team of family and friends she has around her. 

 

Golda explained how learning about ‘spoon theory’ had helped her understand more about energy levels and pacing.

Yes, so basically everybody’s given a certain amount energy and for simplistic things because I like to break everything down into simple, easy things and so did she and it’s really important to see it, this break down all your energy that you are given for the whole day into teaspoons of energy, okay. So a healthy, an all healthy person can have – you work out how much energy does it take you to turn over in your bed? How much energy does it take you to then after you’ve turned over to put your legs over the bed and how much energy does it take you to then stand up? How much energy does it take you to walk to your bathroom, to brush your teeth, to get ready, to shower…You figure out, imagine that you’re filling up your teaspoons with sugar, let’s say, so how much sugar will it take you to do each of those things. I know for me it takes a huge amount of effort to turn over, even to this day eleven months after Covid it takes me two teaspoons of sugar to turn over in bed, okay. Now it takes me one teaspoon to brush my teeth, it takes me three teaspoons to shower. It takes me two teaspoons to walk down the stairs. It takes me four teaspoons or five teaspoons sometimes to walk up the stairs, so I have a chart of how many teaspoons each activity that I have to do takes me and if it takes you X amount of teaspoons to drive to work…it takes me X amount of teaspoons at work, so you get the gist.
 
You figure out how many teaspoons it takes you each day to do, or tablespoons it takes you to do all the things that you need to do throughout the day and you know that you have, let’s say in total, you have 25 teaspoons of sugar and that’s it, that’s all you have for the day okay and you have to work out if it takes you two to turn over and one to put your feet over the bed and another one to walk to the bathroom, and another three to have a shower, you’re using up a lot of energy just to get out of bed and brush your teeth and walk downstairs and eat breakfast and then sit on the couch and then make a phone call and then you look and you’re running out of energy and there’s no, you have no other energy, there’s nowhere else to get the energy. Even if you have a nap, you cannot replenish that energy.
 
By the end of the day, you still only have that amount of energy, however many naps you’ve taken, however much you’ve done, that’s it, at a certain point, you run out, so you have to pace yourself. So basically, in the mor-, the night before I know what I have to do every day and I know how many-, I work out how many spoons it’s going to take me to do this. If I know I have to take my kids to an appointment, my daughter has a dentist appointment then I know that I will not be able to, I know I have to take everything downstairs with me when I first go downstairs in the morning because I will not be able to go back upstairs until much later on in the day because otherwise I’ve used up the energy I needed to take her to the dentist. That’s in simple terms. That helped me a lot, that helped me a lot because I wanted to run before I could walk.

 

Golda said she had to “push her way in” to a Long Covid clinic and the process had a negative impact on her mental health.

It’s been an 11-month journey and there’s so much, okay there’s my story of the Long Covid clinic which taught me that unless you advocate for yourself, you’re stuck in a rut and you’re out of the system. I don’t like talking badly about people or anything, I think the NHS is wonderful. I think that everybody is just trying to do the best they can, and I think that wherever you are in the world it’s all the same, you know, it’s swings and roundabouts and that’s my preface to what I’m going to say now. But basically, my GP referred me to the Long Covid clinic in February and they say there’s a six-week waiting list.
 
This is from July and, first of all, the only way I got into the clinic was to literally push my way in, advocate for myself. Then there was this whole thing, I was so upset, ‘patient no show.’ It said no show. Suddenly the appointment came back on and it said, ‘patient no show.’ I was so mad, I was so, so mad and like they’re just trying to cover their backs on the thing of somebody else’s mental health.

 

Golda appreciated a cardiologist being straightforward about not being able to have answers for her. She didn’t want doctors to make false promises in their efforts to be reassuring.

So, if I could tell the medical community one thing, it’s keep everything to your, to what you’re good at, don’t suddenly become an expert at something that you’re not an expert at and the other thing is, I saw cardiology two weeks ago and one thing that really impressed me with him was that he said, “Look,” he said, “this thing is two years old, we don’t know. You’re not gonna like what I’m gonna tell you but I can’t tell you. I don’t have answers for you.”
 
This is about my heart palpitations, and I actually turned to him, and I said, “Thank you so much, you’re the first doctor that is not telling me, most doctors say, ‘Look there is a solution’, I just, you know, ‘the good news there is a solution. The bad news is I can’t tell you when you’re gonna get better.’” Don’t tell me that. I don’t wanna hear that because guess what, how do you know there was a solution? Maybe I am gonna be like this the rest of my life. Don’t promise me something you don’t know.
 
Just because you’ve seen a million people get better from what I have, maybe I’m part of the other million that won’t actually get my lung capacity back or whatever it is. So, I said, to him, “Actually I’m really happy to hear what you have to say,” and he didn’t ask me about my mental health. First time, the first time I saw a doctor who didn’t say anything about my mental health.