Linka can only experience the outside world by looking at her garden through the window
A woman who used to travel the world is now housebound and can only get in or out of her home on a stretcher. Emily Swiatek, 38, from Toxteth, was diagnosed with hypermobile ehlers-danlos in 2018, but it was in 2020 after catching covid, when her health rapidly declined.
Before her diagnosis, Emily, known as Linka to her friends, was a “confident, happy and adventurous person” who powerlifted, travelled the world and climbed mountains. But since her diagnosis she has only been able to look at the outside world from a window.
Linka told the ECHO: “My whole life I had years and years of chronic pain but as I got older I was diagnosed with Ehlers-Danlos syndrome. That’s when I started using a wheelchair. At first I thought I’d have to use the wheelchair for a little while and I’d get back to how I was and it would be fine, but it got worse. In 2020 I got unwell with covid and developed ME [myalgic encephalomyelitis] and long covid. That gave me chronic levels of fatigue and I ended up bed bound.”
At first, Linka thought the only thing preventing her from enjoying the outside world was the stairs in her house – but in 2022, she moved into a wheelchair-accessible bungalow and not long after, she tried to take a trip to the park. That’s when she discovered that her current wheelchair is no longer suitable for her needs.
She said: “My wheelchair isn’t suitable for me anymore, it causes dislocations, pain and puts me at risk of injury. Due to my conditions it makes it hard for me to sit up for a long period of time so I need a very specialised wheelchair that has a 180° recline and it needs to be a powered wheelchair.”
After five years of being stuck inside her home with an unsuitable wheelchair, Linka has set up a GoFundMe to help raise money to help her buy a specialised wheelchair so she can leave the house again.
At the moment the only way she can leave her home is on a stretcher which means the simplest of tasks, like going to the hospital, is hard. She said: “When I have to go to the hospital on a stretcher it means an hour’s appointment can take up to six hours.”
She added: “I’ve waited for years, it’s embarrassing having to ask for help – I’m basically asking ‘can you pay for me to have legs, can you pay for me to leave my house’ – but after years of being stuck in the house I’ve decided to launch a crowd funder for a wheelchair that allows me to meet all my needs.
“Not having a suitable wheelchair affects every part of my life. I just want to be able to do simple things like reach the cupboards and help with cooking, which is one of my biggest passions. It’s things like popping to shops that you take for granted.
“At the moment I’m stuck in my bed most of the time, my only interaction with the real world is looking out of my window into the garden. And other things like there was a band I really wanted to see in Manchester and knowing that I missed out just because I had a wheelchair that isn’t suitable. Knowing there are so many things I miss out on like going to friends’ birthdays or when you’re feeling frustrated and wanting to just get out of the house, other people can just do that.
“It’s impacting my mental health in a severe way, I’m anxious, depressed. It’s lonely and isolating. I feel like I don’t deserve to live a life out of my house, it’s taken so much work to tell myself I am deserving.”
