A Lancashire mum was suddenly struck by a rare condition which led to her body shutting down leaving her paralysed for weeks.
Haidee Wilson tells AASMA DAY about how a simple ear infection almost killed her – and her amazing recovery.
Haidee Wilson firmly believes she owes her life to a trip to London to celebrate her daughter’s birthday.
Her jaunt to the Big City resulted in her being in the right place at the right time when she was suddenly struck by a rare and life threatening condition leading to prompt diagnosis and treatment by medics.
Haidee, 56, who has daughter Rachel, 33 and son Chris, 30, admits: “It happened to me right on the doorstep of a world renowned neurological hospital.
“I honestly believe if I had been taken ill anywhere else, my symptoms might not have been recognised as it is such a rare condition.”
I honestly believe if I had been taken ill anywhere else, my symptoms might not have been recognised as it is such a rare condition.
Haidee, who lives in Ansdell, was suddenly taken ill with Guillain-Barre sydrome, a rare and serious condition which brings on rapid onset muscle weakness.
Haidee recalls how she had been perfectly fine and healthy when she went to London, apart from an ear infection that had been bothering her.
She recalls: “I had been to the doctors a couple of times with the ear infection. The first time, I was given ear drops which were useless and when I went back a second time, I was given antibiotics.
“In hindsight, I realise the fact I had been to the doctors in the first place meant the ear infection must have been really bad and I should have pushed for antibiotics on my first visit.
“It is only now I realise everything was triggered off by the ear infection as it caused my body to over-react and everything started shutting down.
“By the time I was given the antibiotics, it was too little, too late.”
Haidee, a former journalist who worked at the The Gazette for 20 years, went to London in January last year to celebrate her daughter Rachel’s 32nd birthday.
Mother and daughter enjoyed a museum exhibition and dinner before going to watch Dame Judi Dench in A Winter’s Tale.
Haidee remembers: “We did all that and it was fine, but I did feel a bit funny and odd and as if I needed to sit down and have a cup of tea.
“Looking back, I should have recognised I had never felt like that before.
“But at the time, I just put it down to the ear infection.”
After watching the play, Haidee headed back to her hotel room and says she still felt slightly odd, but not enough to set alarm bells ringing.
It was the following morning that things escalated rapidly.
Haidee says: “When I woke up the following morning, I went into the bathroom and immediately felt weird.
“The bathroom looked ‘swimmy’ and I felt like I was in a special effects film. Everything looked like someone had stirred it up.
“When I moved my head, my vision did not marry up with what my head was doing.
“My feet also felt funny and I had a pins and needles sensation.
“I felt very strange and knew I could not ignore this and that I needed to deal with it now.”
Haidee went to the hotel reception and told them she needed a doctor and she was directed to a nearby walk-in medical centre.
Doctors there carried out basic tests and told Haidee they could not help her but that she needed to go to a hospital and gave her directions and paperwork.
Haidee says: “They must have recognised how serious my symptoms were as they sent me to the National Hospital for Neurology and Neurosurgery on Queen Square London which is a world renowned neurological hospital.
“When I got there, I went to a kiosk and handed in the paperwork the walk-in centre had given me and two minutes later, someone came out and took me into a room.
“She asked me a question and all of a sudden, I could not control my mouth and couldn’t speak.
“I thought I was having a stroke and she grabbed the phone and within seconds, a team of medics raced into the room.
“I was still conscious at this point and can remember this happening.”
Haidee’s body was shutting down and her chest cavity collapsed so she could not breathe.
Doctors incubated her and cut through her windpipe to insert a tracheotomy as Haidee was no longer breathing for herself.
She was taken to intensive care where she spent the next nine weeks.
Haidee could not move anything and was effectively paralysed and could not see as her eye muscles had collapsed and could not even hear because of the ear infection.
She was in an induced coma for two weeks and was on a ventilator with a feeding tube.
Haidee explains: “I suddenly went from being a normal and high functioning person to effectively being locked in.
“I could not move anything and I was surrounded by tubes.
“For the first five weeks, I was completely paralysed.
“The first thing I can remember is after I came out of the induced coma, my friend Sally standing there saying: ‘You will get better than this.’
“That was as positive as anyone could be as the degree of improvement is impossible to predict for a long time.”
Haidee was diagnosed with Guillain-Barre syndrome which is thought to be caused by a problem with the immune system, the body’s natural defence against illness and infection.
Normally the immune system attacks any germs that get into the body. But in people with Guillain-Barré syndrome, something goes wrong and it mistakenly attacks and damages the nerves and Haidee’s case is believed to have been triggered by her ear infection.
The specialist hospital immediately recognised Haidee’s symptoms and even before tests confirmed it, they gave her an immunoglobulin tranfer to help bring her immune system under control.
Without this speedy intervention, Haidee is convinced she would not have made such a great recovery.
She was diagnosed with the Miller Fisher variant of Guillain-Barre which particularly affected her core stability. She says: “My brain felt totally fine, sharp and alert.
“It was just my body that was totally gone.”
Haidee could not speak for about six weeks as she was on a ventilator to get oxygen to her lungs.
After five weeks, doctors and nurses started moving Haidee with a hoist.
Haidee explains: “Even getting me into a hoist and into a chair was a military operation requiring five people.
“As I was on very strong drugs, one of the side effects was very vivid nightmares and I thought at times the medical staff were trying to kill me.
“The care I received was absolutely fantastic.
“Each patient had their own dedicated nurse and all the doctors and nurses were wonderful and so dedicated and focused on your recovery.
“There was never a time I felt anyone took their eye off the ball and I never felt like just a number.
“Everyone there celebrated every milestone with you.”
After nine weeks in intensive care, Haidee was moved to an acute neurological ward before being transferred to Blackpool Victoria Hospital.
She spent 10 days there before getting a place at Royal Preston Hospital’s neurological rehabilitation unit Fellview under the care of consultant David Shakespeare.
Haidee spent about five months in there re-learning how to do everything from walking, talking and eating.
She had daily physiotherapy and occupational therapy and says she can’t praise her physiotherapist and occupational therapist highly enough for the care and support they provided.
Slowly, Haidee began to recover and progressed to learning how to multi-task and cook simple meals.
After being discharged from the rehabilitation unit last July, Haidee began balance classes and has recently finished her last class.
Haidee says: “The last 14 months have all been about recovering and I feel like the luckiest person in the world to have come through the other side.
“It was a very frightening time for my children and my mum and my friends and family as they did not know if I was going to get better.
“It is frightening to think it was all triggered by an ear infection.
“Because the ear infection went untreated, my body thought it would fight it.
“Instead of just dealing with the infection, your body over-reacts and shuts your whole body down instead.
“After a period of time, your body wakes up to varying degrees.
“Nobody looks ahead very far and it is all about the next stage of your recovery.
“I have made an amazing recovery and the luckiest thing for me was that I was in London on the doorstep of the best hospital for this condition when it happened.
“If it had not been for that, the chances of my symptoms being recognised so quickly and me getting the treatment I needed so speedily would have been low.
“Fate was on my side and I was in exactly the right place at the right time.
“I was supposed to have been driving back home the next day.
“I almost certainly would have died if it had happened on my way back from London.”
Haidee is now planning to write a book about her experience to raise awareness and education people about the condition.
She explains: “I want to be an ambassador for other people whose lack of bodily movement has no bearing on their mental capacity.
“I would not change what happened to me as itbrought people and emotions into my life that I would never have experienced.
“The capacity for human kindness and empathy amazed me from the people who cared for me to the scores of people who visited me every single day.
“I feel like the luckiest person alive.”