A young woman has bravely opened up about her heartbreaking journey with rare condition that left her so low, she sadly tried to take her own life.
Amy Pohl, from Rugby in Warwickshire, was once a fit and health primary school teacher before a shocking health diagnosis changed her life forever. The 30-year-old, who is now a TikTok star with 3.7 million followers and has raked in over 253 million likes on her page, fell "gravely ill" before being admitted to hospital with croup - a virus that makes the body's airways swell.
Amy, a Hartlepool resident in County Durham, says she suffered an allergic reaction to anaesthetising spray and was rushed to intensive care. She claimed a doctor "failed to insert a cannula properly" and reinserted it multiple times, causing her hand and wrist to swell. This was the onset of Complex Regional Pain Syndrome which left her in excruciating pain and living with the poorly understood neurological condition.
Eventually she was unable to use her hand and her legs "stopped working" - leaving her medical team and family baffled. She now battles with basic every day tasks, such as entering restaurants or crossing roads. The now wheelchair user said: "I didn't know anyone with the same condition and I just thought 'that's it, I have no future'. I was in so much pain and I didn't think it would ever get any better or that I'd be able to live the life I'd dreamed of."
Explaining further what happened during early diagnosis in 2017, she added: "I did already have Ehlers-Danlos Syndromes (EDS), which means you have increased joint mobility, but it didn't really affect me much back then. I was just always very flexible and I did acrobatics.
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"Throughout this whole process I was also misdiagnosed with Functional Neurological Disorder, but doctors recently told me my body doesn’t absorb nutrients properly, which has caused the damage to my spine and that's why I need to use a wheelchair. But, it's still not fully known what happened to my body, it could've been from the infection I got in hospital."
In 2020 Amy was moved from a rehab facility in her hometown to one in the north east. Due to the ongoing coronavirus pandemic restrictions, she was unable to have visitors. She decided to spend her time sharing her journey on social media to "get her through the day", and soon enough millions of people were watching her videos.
Amy thought she had 'no future' because she was in 'so much pain' (Supplied)
Amy, 30, is thankful she no longer has to sleep in a hospital bed (Opera Beds)She said: "If I'd known there were other people with CRPS when I first got diagnosed and that their lives have improved like mine has, I probably wouldn't have tried to take my own life, I'd have seen there's hope."
Amy's life began to change dramatically and she soon realised how much of "an afterthought disabled people are in society". She now lives in her own home in Hartlepool where she has assistants who help her with daily tasks, including using a hoist to get her in and out of bed or the shower, getting her dressed, and making food. She even drives a car using push-pull hand controls which are fitted within reach of the steering wheel, allowing her to operate the accelerator and brake with her hands.
Amy added: "Everyday I still face obstacles as a wheelchair user. I'd love to say the UK or world is improving in terms of accessibility, but it's still pretty slow. People don't think about the fact that wheelchair users need space to pass. Sometimes I go to a restaurant and can't get in, which makes me feel like a burden because if I'm with family or friends, we can't eat there because of me."
Amy says she wants to be seen 'as a person' and not just as a wheelchair user (Supplied)She continued: "There's been times when I've had to enter through the back near the bins and it makes me feel like an afterthought. I would love disabled people not to be an afterthought when buildings are designed. People might be surprised to know I've found using buses inaccessible, you can get in on a wheelchair via a ramp, but only one wheelchair user can go on at a time.
"I've been stuck at the bus stop before waiting for another bus because there’s already a wheelchair user on board the first one. I've also got friends who use wheelchairs so we've had to travel apart, which is sad. We spend a lot of time doing research before going somewhere to make sure we can get in."
The influencer previously shared a about being unable to pass in her wheelchair on the pavement at night, because a van was parked on the curb. She couldn't cross the road because there was no drop curb either side, forcing her onto the busy road. "I wish people saw me as a person and not someone in a wheelchair," she added.
Amy is now celebrating life and has a passion for social media awareness (Supplied)
The TikTok star has raked in over a whopping 253 million likes on her video clips (Supplied)Amy said her social media popularity has also helped her understand her condition better, and she has gained tips from others. She says one thing that has made a huge difference to her day-to-day life is her bed - she was shocked to find one from that "doesn't look like a hospital bed".
She added: "My nurse said I'd need one. I went into a state of panic and said to my mum I didn't want a hospital-looking bed in my room. I'd had that for six years in hospital, and in rehab and care centres.
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"I had no clue where to look for a nice bed that still had all of the same functions as a hospital bed, so I asked my followers, and they recommended Opera Beds. I was shocked to see how much they looked like normal beds and now I'm actually excited to show people my bedroom. It’s definitely made a huge difference to my life."
Amy added: "If you watch my TikTok you'll know I'm constantly taking the mick out of myself. I realised eventually that instead of fighting myself I should fight for myself, and for a better future. Social media has been like therapy for me, I've connected with a lot of people who are going through their own struggles or have a similar diagnosis to me and it's helped a lot."
For more information on Complex Regional Pain Syndrome visit the NHS website or book an appointment with your GP.
*If you're struggling and need to talk, the Samaritans operate a free helpline open 24/7 on 116 123. Alternatively, you can email jo@samaritans.org or visit their site to find your local branch
Do you have a story? Get in touch via Lucy.Marshall@reachplc.com.
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