A British woman living her “dream life” in Spain woke one morning in agony and within weeks was completely paralysed.
Charlie Wilson, who had been fit and thriving overseas, says she would have chopped her legs off to escape the pain as doctors initially struggled to understand what was happening to her body.
The 38-year-old was diagnosed with extrapulmonary sarcoidosis, a rare condition that causes small patches of swollen tissue, to develop in the organs of the body, and has moved back to the UK where she relies on her family to help her with basic tasks.
“Swapping life from Mallorca to County Durham is already depressing enough. When it’s completely out of your control, it hurts a bit more,” Charlie, from Bishop Auckland, County Durham, told Need To Know.
“I had a lovely colourful life in Mallorca, a lot of independence, a great quality of life and freedom to do what I wanted, when I wanted.
“Nothing was different or out of the ordinary in the run-up, I randomly just woke up sore as if I’d done a gym workout out and each day it got worse.
“I went to the doctor about five days later, I was told I would get a routine blood test in around 10 days time.
“In the meantime, I went to the hospital because the pain was unbearable.
“I’d have chopped my legs off there and then if I could, the pain was that bad.
“The hospital didn’t do much for me then, checked me for an infection in my muscles, and rheumatoid arthritis and two hours later came back and said my bloods were perfect.
“So I was sent home with more pain meds.”
Her twin sister Victoria, 38, flew to Mallorca to care for her in March last year.
Once urgent blood results came back, she was rushed to hospital, where she saw two neurologists and underwent extensive testing, including brain scans, chest scans, a PET-TAC scan and countless blood tests.
As she worsened, lumps began forming all over her body.
Sarcoidosis is typically treated with steroids but she says they “didn’t touch the sides”.
Even morphine failed to control her pain.
Charlie, a social media manager, said: “I couldn’t move at all.
“I was completely wheelchair bound.
“Blood tests came back a few days later and my GP sent me to hospital urgently.
“I was deteriorating in front of their eyes and lumps were forming in front of them all over my body.
“They were speechless as they didn’t know what it could be.
“I was admitted to intensive care for 17 days and had countless tests done.
“The doctors told me it was an illness called sarcoidosis and when I researched it, I knew I didn’t have that but they were insisting I did and booked me for a biopsy.
“I know my body and I know I wasn’t having anything with my lungs.
“When they told me I have extrapulmonary sarcoidosis and I did research on that, it definitely made more sense.
“The version I have affects my limbs and joints.
“1.4% of people have this version.
“I felt relieved to be able to have a name but the challenge only just started. Because it’s so rare, no one knew how to help me in terms of medication.
“I was taking an insane amount of medication in the hospital.”
She is now receiving biologic injections of adalimumab, a prescription biological, anti-TNF medication used to treat chronic autoimmune inflammatory conditions.
During a flare-up, she loses mobility in almost all her limbs and joints.
Her sister and niece, Grace, 17, now help carry her up and down stairs, lift her out of bed, wash her hair and walk her dog.
She doesn’t know whether her condition will improve.
Charlie said: “During a flare-up, I lose mobility in all my limbs and joints except my right arm.
“I can’t lift my head, I can’t pick a bottle of water up with my left hand, I can’t sit, stand or walk.
“The pain is like something I’ve never experienced before.
“The fatigue is brutal, I am constantly exhausted and can’t do basic things alone.
“I’m home all day, every day,
“I’ve just had to leave my life in Spain and come back to the UK.
“On a really good day I might manage a trip to Tesco but that would wipe me out for three days after.
“It’s never-ending suffering.
“The hardest part to navigate is doing everything day things, showering, cleaning, eating.
“It’s so tiring.
“It’s sad that this is my life and I have absolutely no control over it, it’s not through any choices I’ve made and it’s unfair on others to have to put their life on hold to help me.
“I’m fiercely independent, so this has been very debilitating.
“From doing what I want, when I want to asking for help to go to the bathroom is heartbreaking.”
Charlie added: “I don’t know if this is my life forever and I just need to get used to it or if it will get better and no one really has answers.
“I want people to keep pushing for answers, I knew I didn’t have the regular version of sarcoidosis.
“It’s a scary and challenging road but someone out there can help. I am trying to share my story as much as I can because I’m struggling to find people with the same version of extrapulmonary sarcoidosis as me but we have a voice and we shouldn’t be worried to use it to help ourselves.
“I’d love to connect with people going through the same as me.”
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