A teen has told the horrifying story of how a rare and debilitating disease “locked” her inside her own body for four months.
Rachael Bailey, 19, was getting ready to go out with her friends for the night when she started to feel a strange tingling sensation in her feet when she was putting her shoes on.
Putting it down to her new shoes, the UK university student continued dressing and went out with her friends. It was only when her legs started to feel “really heavy” whilst dancing that she thought something might be wrong.
“I came home to Nottingham for a reading week in late October, and arranged to go out with some friends on the Saturday,” Rachael told The Mail Online.
“As I was getting ready I felt this tingling in my toes, and, I was dancing that evening, my legs felt really heavy. But I just thought that it was my new high heels,” she said.
Rachael continued home and woke up the next day with severe back pain, feeling weak – something her mother put down to being hung-over.
She rested the rest of the day, refusing to come downstairs to eat dinner because of her sore legs.
The next day, things had become dramatically worse.
“I physically could not move my legs,” she recalled, “They had turned to lead.”
Ringing her mother, Rachael attempted to explain that her condition had worsened and she needed help, but thinking she was just being “dramatic”, her mother Karen told her to “deal with it” herself.
After being brushed off by her mother, Rachael rang emergency services, who sent an ambulance to collect her.
Once she was brought to Queen’s Medical Centre in Nottingham, doctors diagnosed Rachael almost immediately with Guillain–Barré syndrome, or GBS.
The doctors explained to Rachael that had contracted the rare and that she would quickly lose sensation and then movement in her body.
Talking to The Mail Online, Rachael revealed after just two days, things had gone from bad to worse.
“By Wednesday I was struggling to swallow. By Thursday I couldn’t even text. Then I started having trouble breathing, so they took me to critical care,” said Rachael.
One of the doctors commented: “She went from being normal to needing a ventilator within three days, which is very quick indeed. The quicker it comes on, the worse it tends to be. I have seen quicker and worse. But this is the worst I’ve seen when the patient has gone on to recover.”
Rachael Bailey. Image via The Mail Online.
After administering a dose of immune-boosting antibodies, called intravenous immunoglobulins, in the hope of boosting her immune system, Rachael unexpectedly suffered a devastating seizure as a side effect.
After getting the seizure under control, hospital staff discovered that her brain had swelled to a dangerous degree.
“Her eyes rolled back, she stopped breathing and all the machines went insane. All the staff started rushing around. Then she went completely grey, and I thought I was looking at a dead body,” wrote Rachael’s mother.
At that time, the doctors also realised that the seizure had almost completely paralysed her, taking away her movement of her arms, legs and upper body, until she was only able to move her eyes.
Rachael and her mother’s only form of communication was restricted to Rachael using her eyes to ‘point’ at letters on an alphabet board.
“We had fall-outs when she couldn’t even speak,” said Karen, “She had me in tears just using that letter board.”
“We literally watched her slowly deteriorate: it was like seeing someone slowly drown in front of you. And besides losing her ability to move, breathe and speak, she was also in an awful lot of pain,” said her father, Andrew.
Paralysed and in constant pain from her nerve endings being exposed, Rachael fell into a depressed state, telling her mother that she “wanted to die”.
“I never actually did want to die. I just didn’t want to be in pain,” said Rachael.
After four months, however, Rachael’s condition began to improve; she began to regain use of her facial movements and outer extremities and began to breathe and eat on her own.
From there, Rachael improved gradually, and through physiotherapy, was able to begin to walk and talk again after months of paralysis.
And now, after being discharged from the hospital and returning to university, Rachael says she’s grateful for her harrowing experience – “in a warped way”.
“In a warped way, I’m lucky it happened because it’s changed my outlook for the better. It’s made me value what I’ve got and I realise every day is a gift,” said Rachael.
Rachael Bailey and her mother, Karen. Image via The Mail Online.
Throughout the duration of her daughter’s illness, Rachael’s mother, Karen, kept a diary of the events, where she revealed the highs and lows of her 135 days in hospital. Via The Daily Mail.
October 2014
Sat 25: Rach went out.
Sun 26: Rach hung over. Tingly hands and feet. A lot of pain in legs. Unable to sit up or eat Sunday dinner. Then just dozed on sofa.
Mon 27: Rach called me at work saying she couldn’t walk – no sympathy. She called 111. Taken to hospital though. Diagnosed with ‘GBS’.
Wed 29: Rach very weak, but still able to use phone.
Thurs 30: Taken to intensive care as a precaution.
Fri 31: Rach weak. Frightened.
November 2014
Sat 1: Unable to use arms, breathing shallow. V distressing.
Sun 2: Seizure. Rach stopped breathing. Sedated and later had MRI. I’m in shock. I’ve never seen or felt anything like this. I feel numb and terrified. My body feels empty but full of energy… I feel scared and want to get away, but I shouldn’t feel like this. I’m running away when Rachael needs me most… She goes grey. Her eyes
are partially open. Her heart rate begins to drop quickly along with her oxygenation stats. I’m terrified. I’m not crying but I feel like the world is ending…
Mon 3: Rach communicating through a letter board now.
Fri 7: Tracheotomy.
Mon 10: Rachael depressed… stated she just wants to die.
Tues 11: Rach’s 20th birthday. Lots of pain.
Fri 14: Rachael’s in agony all day – screaming inside for 1.5 hours, but no voice so couldn’t be heard. I read her to sleep. She wiggled her fingers a little.
Mon 17: Rach can’t tell where her limbs are and can’t see them. Anxious, upset, and frustrated and in pain. But neurologist says she’s clinically improving – there’s more finger movement.
Tues 18: Docs say Rach won’t be returning to uni after Xmas as recovery linked to severity of syndrome and this is v severe. 3-6 months until she goes home.
Fri 21: Physio showed me how to massage hands – helps show the brain they’re still there.
Sun 23: Nurse painted Rachael’s nails. Heart rate lower today – 107 to 120.
Tues 25: Called in again, Rach v v v upset. Saying she can’t cope, wants to die, ‘Can’t do it any more’. Refusing oral meds. Referred to psychiatrist. She asked me to stay the night, to sleep in her bed and to take her home.
December 2014
Sat 6: Phlegm in throat causing heaving and nausea. Refused physio.
Tues 9: Really good day – positive mind-set. 2 x 3 hour spontaneous breathing sessions.
Fri 12: Rach sat on edge of bed, able to hold head up and, with support, upper body. Starting to chew, ate Wotsits and chocolate buttons.
Mon 15: Rach told psychiatrist how she will have changed as an individual and is looking forward to meeting that person.
Mon 22: Tracheotomy taken out!
Xmas Day: Rach happy & cheerful. Wrote her name on a piece of paper too.
January 2015
Sat 3: Rach went for a walk through hospital to south entrance and back.
Sun 18: Stood up unaided for first time.
March 2015
Wed 11: Rach home at last!
