Lucy
Lucy is 32 years old and a sign language interpreter. She had to return home to live with her mother after her symptoms made it difficult to live independently. Ethnicity: White British.
Lucy became unwell in March 2020, when she began experiencing a fever, shallow breathing and gastrointestinal (stomach) issues. Due to her symptoms, she had to seek medical help and return home to live with her mother. Lucy was interviewed in May 2022.
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Lucy began to feel unwell in March 2020, when she began experiencing a fever, shallow breathing and gastrointestinal (stomach) issues. Lucy’s symptoms were so bad her mother rang the paramedics, but she chose not to be admitted after a family friend had passed away alone in hospital. These symptoms lasted 7 weeks before Lucy was able to get on her feet again. However, three weeks after feeling better Lucy had to be admitted to hospital because her appendix had ruptured and had to undergo an appendectomy (removal of the appendix). Unfortunately, Lucy’s wound became infected which left her with an open wound for 11 weeks.
Alongside, her other medical issues Lucy also sought medical attention for her Long Covid symptoms from her GP. Her GP also has Long Covid so while she understood Lucy’s symptoms, she was often off unwell herself. This has meant Lucy has regularly had to relay her symptoms and diagnoses to other health professionals when seeking care. Lucy became particularly frustrated when she was questioned why she used a wheelchair despite her PoTS (Postural tachycardia syndrome - an abnormal increase in heart rate that occurs after sitting up or standing) diagnosis being well known. Lucy found what she referred to as medical admin was often frustrating.
Due to her symptoms, Lucy had to return home to be cared for by her mother. She had previously been living independently in a flat with her housemates but became unable to leave her flat, shop and cook for herself because of her persistent symptoms. Her family were concerned she would get stuck in the flat, which is up three flights of stairs so encouraged her to move back home. After a few months, Lucy returned to her flat in an attempt to live independently again but when she got shingles, she realised that “something’s got to give”. She was also financially unable to continue to afford her flat when her symptoms forced her to stop working, resulting in Lucy returning home to live with her mother.
While ill, Lucy recalls her mother having to do everything for her including bath and wash her hair. Her mother began teaching online so she could shield while caring for her. Her brothers and nephew also took precautions to protect Lucy from getting Covid again. Although Lucy has been able to regain some of her independence as her Long Covid symptoms have improved, she often feels frustrated that she isn’t able to help round the house more.
Lucy doesn’t like to talk about the future because she doesn’t know what it will look like. She’s taking things day-by-day.
Lucy doesn’t like to talk about the future because she doesn’t know what it will look like. She’s taking things day-by-day.
I don’t know whether you’re comfortable about me asking your thoughts about the future. I realise it’s a challenge.
It’s interesting, me and mum discussed this yesterday because I think up until recently, I had a lot of hope with it being this Long Covid, but I would slowly improve, but now I’ve got different diagnosis such as POTS and EDS which are lifelong syndromes. My outlook has changed, and I feel like it’s not, life sentence sounds really dramatic, but it’s a lifelong, they’re lifelong syndromes, so, although I kind get stronger, I hope, I’m going to have to get used to this changed way of living. But it was funny, mum said yesterday, quite a while over the last two years, I just wouldn't talk about the future, and I found it really difficult to plan anything.
Sorry, can I clarify, did she say she wouldn't talk about the future, or you wouldn’t talk about it?
I wouldn’t. I don’t talk about the future. I would shut down the conversation just because I was so fearful of what the future would bring and still am. I can’t imagine what my future will look like at the moment. I just try to take it day by day because I think I’m quite a logistical person and on a day-to-day basis, I still need lots of help and I know what the social services are like, and I know what the council is like because I used to work with deaf people and deaf people that have additional disabilities. And I know how hard it is to get carers and things like that. And I obviously think it’s one thing relying on your family but having to have someone else come in is a completely different scenario to get my head around. Yeah, so at the moment, I’m taking it day-by-day, can’t really answer that one. I know where I live it would have to be ground floor, I know that much [laughs]. And an adapted bathroom because it’s really difficult washing with the temperature and with standing. And career wise, I find that incredibly difficult to talk about because it took me ten years to become an interpreter. They say it takes a minimum of seven. And I’m not quite ready to admit or give up on the profession. But my cognitive dysfunction depends on how it does and not being able to process two languages at once. I have to really assess that at some point.