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Claire Parry is raising money for Narcolepsy UK

Claire and Isabella's 30 walks in 30 days

Event date: 18th March 2023

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My story

As part of Isabella and my pageant journeys were aiming to raise awareness of narcolepsy and its impact on those who live with it.

In May Isabella will be entering Miss Glamour UK as her first pageant. And while she will be raising money for 3 worthy causes by taking part in this pageant she wanted to help her mum with her awareness journey.

Claire will be entering 2 pageants this year, Miss Stardust International in October and then the Warrior Charity Pageant in November, which is a pageant for those with invisible illnesses to take part.

Now let me tell you Claire's story, my story.

I have always struggled with tiredness, even as a child. While children were arguing with parents to stay up past bedtime, I was begging to go to bed. I remember several instances at Primary school when my tiredness being an issue. Whether it was the time I fell asleep in class while watching Paddington or the times where mum would send me into school at lunchtime because I just couldn't wake up in the morning to go to school.

Things became worse at secondary school. I was very active and took part in many extra circular activities including badminton, gymnastics, cheerleading but I was exhausted. I would come home from school eat dinner (only because mum insisted) and then I'd go crawl into bed and pass out.

By the time it came to my GCSEs I was getting up, going to school grumpy and tired, coming home, having a nap, having dinner and then going back to bed. I cut down on my extra circulars and my life became a cycle of school, sleep and dinner. Doctors just told me it was being a teenager or depression but as I argued with the doctors, with depression you have good days and bad days and I was having no good days. So I made it through my GCSEs and ALevels in a sleepy grumpy fog.

At uni I saw countless doctors and still they would say it was depression.

I remember taking a trip to Disney during my second year and collapsing in the queue for the Tower of Terror. My friends helped me to a bench while I tried to get myself together. I left the ride in floods of tears confused and scared. I rang my doctors from France and screamed down the phone at them in frustration as they told me every single test they'd done had come back completely clear and there was nothing wrong with me.

I spent the next 2 years arguing and crying with doctors until I returned to Kent and my family doctor. We went through all my symptoms and he suggested Narcolepsy. I was relieved just to hear a different path other than depression. I was sent to my local hospital for tests but they said unfortunately due to the rarity of Narcolepsy they were unable to test for it and I'd have to be sent to London.

At my first appointment at St Thomas' I was finally heard. I met with a doctor and they referred me straight away for a sleep study.

In November 2010 I went for my sleep study. My dad came with me and I was terrified. I hate hospitals and I was going to have to stay over night on my own but I was hoping for finally some answers.

I had my sleep study and a few weeks later recieved the results ... it was confirmed I had narcolepsy. It had taken years but I finally had an answer.

Over time my narcolepsy has gotten worse and it sucks! I'm exhausted, I have cateplaxy attacks (sudden muscular weakness) which are occasionally a little twitch and other times full blow limbs giving out whether it be my arms or my legs, I have micro sleeps which have become more frequent, I also will have automatic behaviours which can completely confuse me when I come out of it. And those are just the symptoms when I'm awake. When I sleep I suffer from sleep paralysis which is weird when you are just waking up or falling asleep but are fully aware of absolutely everything going on around you. Or vivid dreams where sometimes I can struggle to work out if I'm awake or asleep.

I struggle to accept my body and brain don't work like everyone else's and at times I hate my limitations, especially as on the outside it feels like everyone else is tired so why can't I do what everyone else is doing.

I may have had my diagnosis 10 years ago but just because I know what it's called, what all these symptoms are and taking daily medication doesn't make it any easier.

Isabella is an amazing support and understands mummys limits and how hard some days can be. Yes she gets frustrated with those limitations but what 6 year old would let get frustrated when her mummy says she hasn't go the energy to play or go to the park. Thankfully we both love arts and crafts and movies so on bad days we lean more on those activities.

I hope your able to support us in our journey to raise awareness as well as our pageant journey.

Thank you Claire and Isabella x

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Claire Parry is fundraising for

Narcolepsy UK

Charity number: 1144342

Claire Parry is fundraising as part of

30 Walks in 30 Days

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