Burnley woman's rare brain condition meant she lost her memory every day for six months

A Burnley woman whose world was turned upside down by a deadly brain condition that robbed her of her memories is preparing for an inspiring Christmas charity challenge.

Friday, 13th December 2019, 11:57 am
Updated Friday, 13th December 2019, 11:58 am

Professional dancer Claire Rhodes (29), who had been working as a fitness instructor at Crow Wood, was rushed to hospital in April 2018 with what doctors thought was meningitis after her flu-like symptoms worsened.

It in fact turned out to be viral encephalitis – a rare and devastating neurological condition that causes inflammation of the brain.

Overnight, Claire went from being fit, healthy and active to having to learn how to crawl and walk again, and that was only the start of her life-changing journey. "I was diagnosed through process of elimination really," said Claire, who lives in the Ightenhill area. "The symptoms are very random; they're a bit flu-like, but it can also feel like you're getting run down.

"I took myself to bed at 7-30pm that night with what I thought was a migraine. It was only when I started to lose feeling in my left arm and my head felt like it was about to burst, I thought something wasn't right. Then I realised I couldn't really move. My mum and dad came in the morning when they realised I hadn't been to work. They checked my body and rang 111.

"From that point I don't remember anything. I came around 10 hours later in a dark room. They couldn't work out what was wrong with me. They said, 'We don't think it's bacterial meningitis, we think it's viral meningitis but there's nothing we can do'. We went home and I spent the next 10 days to two weeks in bed because I couldn't move.

"The more I started to learn how to crawl and walk again; and started getting my physical side back, the more confident I became in my ability to function as a human. That's when my parents started to notice that my mind was going."

From the beginning of May 2018, until the beginning of this year, Claire has no memories. She can't remember her brother's wedding, her own birthday or going on holiday with a friend.

Her life became a series of Post-it note reminders as she struggled day-to-day trying to piece together what was going on around her.

"Once my physical side started to get better my mental side started to deteriorate," said the former St Hilda's pupil. "I couldn't remember anything, I was writing backwards and speaking backwards. My brain wasn't functioning. My mum said I used to sit there and cry every single day. It's safe to say I was depressed and had anxiety – I couldn't leave the house so all the support people from Rakehead rehabilitation centre had to come to me.

"Everything I speak about from during that time is what people have told me or what I've written down, or voice notes I've made. It was a full-time care job for my parents and it must have been upsetting for my friends – I'd gone from loving life, being fit and healthy and happy to couldn't leave the house, couldn't remember anything. It does make me sad looking at pictures of things like my brother's wedding but I have to look forward now."

It was towards the end of 2018, following a visit to a neurologist at Beardwood Hospital in Blackburn, when Claire eventually received her encephalitis diagnosis.

"Because they hadn't done the right test at the right time, it was too late really," said Claire, looking back at the initial diagnosis. "They didn't know they were looking for encephalitis, they thought I had meningitis. However, because they thought it was meningitis they did inject me with a lot of things that helped kill off a lot of what was doing the damage. So it became a natural healing process."

Determined that she was not going to let this condition rule her life, Claire decided that if she was going to be the 'one day girl' she was going to make the most of each day.

"I wrote myself a motivational letter at some point in the middle of all of it to help get me though. Mornings were awful – I'd be angry, crying; I'd be in pain with chronic headaches and migraines. By midday I'd come to but I'd just be repeating the same conversation every single day, because it was the same moment of realisation.

"So I started to think well if I've only got one day, let's make the most of this day. I started pushing myself a bit more. I told my friends to take me out – even if I was having a hissy fit. I recorded myself them and told them to play it back to me if I couldn't remember.

"I had an occupational therapist from Rakehead called Louise and we started making a plan, because even though my memory was still bad I wanted to get back to work. I didn't want to stay at home claiming benefits.

"I went back to Crow Wood at the end of 2018. They were fantastic with me. I was slowly getting back into it, doing basic inductions, a class here and there; it was nice getting used to being in a working environment again. Crow Wood were amazing with that.

"Then I started picking up really random memories. The first one I had was pancakes; I remembered that my friend was coming round for pancakes.Things started to stick then. It was quite overwhelming at first, but at the start of 2019 I started laying down memories. I could recall what I had done the day before, even if it was only a couple of things. Things really started to fall into place then."

To celebrate turning 30 in January, Claire, who is now the assistant manager of the Landmark in Burnley, is embarking on a '30 days in 30 Different Ways' challenge in the lead up to her big day.

Each day, Claire will set out to complete a different challenge – these will range from running a 10k and volunteering at a charity shop to completing a 25km walk in a weighted vest.

On Christmas Day she'll be doing something she has done every day since she was nine years old – washing up and serving Christmas dinner to old ladies at Ashmede Residential Home.

"I always wanted to do a bucket list before I turned 30 and part of that was to do some sort of fundraising that meant something to me. Over the festive period where I feel it is about giving and being grateful; I'm going to spend my time being so grateful for my recovery and my friends and family and also being generous with my time, helping others and raising money and awareness for the Encephalitis Society. When I turn 30 I can say 'I did it' and I've got the memories.

"For me it's case of instead of dwelling on the year I can't remember, this is where I am now and I'm doing really well. Encephalitis is fatal. Yes, I had a rubbish time but people have had it a lot worse. I'm alive, I'm doing well and I'm now able to work again.

"The Encephalitis Society is global, in terms of its reach, but they only have one office, in York. If I wanted to go and see so somebody about it there is only this one place. I was lucky to have the support network that I've got, but what if you're a single mum or somebody who hasn't got the support I had; who do they go to? They don't get any help. The Encephalitis Society is the only place you can get that and that is why it's so important to raise money and awareness for it.

"I know there are people who have died from encephalitis, who can't speak, who can't walk; people who get seizures up to 20 times a day with it. If there's enough research and awareness, it can only help."

Claire is looking forward to her 30-day challenge but is also slightly apprehensive due to not having done any real physical activity in 18 months.

"I was applying for some of my dream dance jobs when I got ill, " said Claire, who toured Europe and America as a dancer. "I can't dance now because my head hurts too much and that's why I don't work at Crow Wood anymore. It just gets a little too much. I very highly dyslexic now, slightly deaf in one ear, suffer from bad headaches and get tired beyond belief. But I don't want to be that person that gives into it and I don't want pity.

"So one of my challenges is going to be one last class at Crow Wood – two back-to-back hours with 30 dances. I have not done anything since I stopped because I haven't been able to, so this class and running a 10k; they're going to be really hard.

"I've tried to make the challenges a real mixture. I want to show people that there are different ways to raise money and to help people.

"This is about helping the Encephalitis Society but if I can help other charities as well while doing this and raise awareness for them then why not? I want to show people that we can all do more."

Anybody wishing to donate can do so through www.justgiving.com/fundraising/30days30differentways. Claire will be posting updates throughout the challenge on her ‘30 days, 30 different ways’ Facebook page which can be found here.