A woman has had to relearn how to walk and talk after suffering a rare brain bug that sparked hallucinations of spiders climbing across her body.
When mum-of-two Aisling Tipping, 34, first felt low and fatigued, she was prescribed medication for postnatal depression.
But when she began developing physical symptoms, including agonising headaches, double vision, she knew something was really wrong.
She was taken to Royal Victoria Hospital in Belfast in October 2018, and, after a series of tests, doctors diagnosed her with a severe form of encephalitis – a serious inflammation of the brain, which occurs when the body attacks itself in error.
Aisling was hospitalised for two-and-a-half months, before being transferred to a rehabilitation unit, she is now back home in County Armagh, Northern Ireland, with her mum Ita McCrory, 58.
Aisling has lasting difficulties with her speech, as well as a tremor in her hands, and she was forced to leave her job as an insurance manager because of her illness.
‘It’s very hard to reflect on what I’ve been through. It almost feels like I have post-traumatic stress disorder,’ says Aisling.
‘Naturally, I’m devastated by what’s happened, but I have tried to keep my sense of humour. My motto is, “If you don’t laugh, you’ll cry.”
‘You have to just put on your big girl pants, get on with it and keep going.
‘It may not be the one I’d planned or imagined – but I want to show that there is a life after encephalitis.’
Aisling’s nightmare began with feelings of tiredness and low mood, which started shortly after having her second child.
But the tablets she was prescribed for postnatal depression had no effect and she soon developed other, worrying symptoms.
‘I was getting really bad headaches and struggling with my balance,’ she explains.
‘That was one of the scariest things – I was having to grip onto walls to steady myself.
‘I joked to my family that I felt like I was walking like John Wayne.’
As time went on, Aisling’s symptoms grew increasingly bizarre.
‘I started having hallucinations,’ she says. ‘On a few occasions, I jumped out of bed because I thought I could see spiders.
‘On another occasion, I had a panic attack in a beauty salon, where I’d gone to get a facial. The staff were so worried that they were going to ring an ambulance, but I managed to calm myself down.’
When she also started having double vision, Aisling wondered if the problem was linked to her eyesight, so saw an optician in late October 2018.
From there, she was referred for a CT scan and blood tests at her local hospital.
When they came back clear, she was told to go to eye casualty if her symptoms did not improve.
‘Things didn’t get better, so I went over to casualty, where they quickly realised it wasn’t my eyes – it was something neurological. I was admitted to hospital that same day,’ she says.
‘The day after I was admitted, my speech began to really slur. It felt like my tongue was too big for my mouth.’
After receiving the results of her numerous tests, consultants diagnosed her with autoimmune cerebellar rhombencepalitis, meaning the part of her brain responsible for motor skills, balance and coordination was being affected.
The charity Encephalitis Society, who have been a great help to Aisling and her family, estimate that there are just 6,000 cases of encephalitis in the UK each year.
The condition is caused by an infection, or by the immune system attacking the brain in error. While symptoms vary, they include confusion, hallucinations, memory loss, seizures, uncharacteristic behaviour, a high temperature and headaches.
During her extensive hospital stay, Aisling had to relearn basic skills like washing, dressing, walking and talking.
Then, in early 2019, she was transferred to Belfast’s Musgrave Park Hospital for specialist rehabilitation.
‘That was intense – like a bootcamp,’ she says. ‘I had occupational therapy, physiotherapy, art and music therapy.
‘The doctors and nurses were all lovely though. I felt very lucky to have got a bed there.’
Since then, Aisling has been persevering with her care, which includes physical therapy, speech therapy occupational therapy and psychology.
She returned to hospital for two months in March 2019, during which time she had a bone marrow biopsy, then again in January 2020, after experiencing double vision she feared was a relapse. She has now been home with her mum Ita and stepdad Mark since March last year.
Aisling is making progress, slowly reducing the amount of medication she requires and throwing herself into a number of community support groups.
She is also determined to raise awareness of encephalitis and offer hope to other survivors, saying: ‘Doctors have said I could improve, but for now, I am taking things day-by-day.
‘I know I need to have realistic expectations, but I am also determined to keep going and keep smiling.
‘I’m immersing myself in all sorts of different therapies, including a programme that gives vocational training, and I’m so thankful for the support of my loved ones and charities like Encephalitis Society.’
Meanwhile, Ita, who was by her daughter’s side throughout her ordeal, has seen firsthand the fantastic progress she has made.
‘Aisling’s speech in particular was badly affected. For a long time, she didn’t really want to talk because she was worried that people wouldn’t understand her,’ says Ita.
‘But now, her confidence is growing and she’s getting stronger all the time.
‘When she was first in hospital, she was very wary about who she let see her because she looked so physically different. The steroids had taken her from a size 10 to about an 18 and she just didn’t feel herself.
‘She went from being able-bodied to her life changing immensely in every single way.’
Ita also wants to encourage other families affected by encephalitis to be patient, reminding them that progress is a marathon, not a sprint.
‘Now, there will be no more physical damage to Aisling, so its more about picking things up from here and dealing with what the condition has left,’ she says.
‘In the early days, people would ask how long it would be before she was better – but it’s not something you can just get over quickly, like a typical bug.
‘It takes time and patience. It’s a long road, but Aisling is improving every day and we will never give up.’
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