With it being the fourth anniversary of the first COVID-19 lockdown, we spoke to busy working mum of two, Alicia, who found herself feeling completely lost and alone after developing long COVID. Thanks to Thistle – a National Lottery funded charity supporting people with long term health conditions, she is looking forward to the future again. Here she shares her story.

Developing long COVID

Being a mum of two and the CEO of an organisation that deals with innovation, Alicia’s life before the pandemic was pretty fast paced. She would often commute from Edinburgh to London for her high-pressured job and was used to exercising daily to stay active.

But all of that changed after a trip to London in December 2021, when she contracted COVID-19.

Alicia recalls, “I was really ill over Christmas, but at the time I thought I’d have two weeks of feeling rubbish then I’d be okay. I was very wrong.

“I tried to go back to work, but found I couldn’t structure a sentence. I kept thinking, ‘I just need a few more days’. It was affecting me physically, but the main impact was cognitive.”

“I was used to spending my days making complex decisions and being able to read, talk through and absorb a wide range of information, and suddenly I found myself standing outside my children’s bedrooms and not being able to tell which bedroom was which.

“I was finding it hard to drive, I couldn’t put the children to bed, I couldn’t cook, I couldn’t exercise. I was sleeping at least three times a day and then at night for 10 hours. It was absolutely terrifying and it seemed like there was no help at all.

“At one point my husband and I tried to go out to a friend’s birthday. Just taking the bus into town absolutely exhausted me. We left early and I was in bed for two days after.

“On days when I could absorb a bit of information, I was trying to understand what was happening to me. There was a recognition that there was this thing, long Covid, and that people were starting to look into it.

“But when I went to the GPs, the response was just ‘we’ll sign you off work’. I didn’t want to be signed off; I wanted to be helped. I was generally used to being listened to in life, at my job, but I was in this situation where nobody seemed to be believing me. I felt desperate and unheard.”

A glimmer of hope

Desperate for help, Alicia came across National Lottery funded Thistle on a long COVID website. She reached out asking for support.

“I spoke to a wellbeing practitioner on the phone and that conversation changed everything. Back then, it felt like being alone in a really cold, choppy sea, where the water’s coming out of your mouth and you’re thinking, ‘I’m never going to get out of here’. Speaking to the practitioner for the first time felt like somebody giving me something to hold on to. I started to think, ‘I can do this.’ My situation hadn’t changed, but someone was helping me and so I could start to see a way out of it.

“The recognition and validation I got from speaking with my practitioner was incredible. I couldn’t believe that finally, somebody actually believed what was happening to me, without me having to try and prove myself. I was being listened to and I knew someone really cared.”

Getting support

Alicia started on a Lifestyle Management Course at Thistle and was relieved to finally meet people facing the same challenges as herself.

“We were all in different situations, but we had this unity which felt like a life raft. It was really helpful, meeting and sharing experiences.

“The course was full of practical learnings around how to manage your day to find and experience joy and the things you love doing. When you live with a health condition, you can feel totally out of control. You don’t know what’s going to happen to you. So learning how to work around the harder parts of your day makes you feel like you have more control over your life.

“I’ve always loved being active, but initially, I didn’t want to get back on an exercise bike. But the gym practitioners were so encouraging, and the gradual approach was really helpful. By the end I was eager to get on an exercise bike again. I’d come out of Thistle every week and feel like someone had breathed life into me. I felt joyous and cared about, like I’d had a big hug.

“Through Thistle I found ways to accept my new reality a bit more. It helped me find value in my new circumstances, find a way to manage it and develop a real quality of life. During my journey with long Covid, I lost my identity and my confidence. Thistle’s support changed all that and made me find my worth and my value again.”

---

Thistle recently received £149,881 in National Lottery funding to continue delivering support to people like Alicia living with the effects of long COVID and other long term health conditions.