An amazing week and feeling suitably refreshed. We needed this. Our first holiday since 2007. Since before I became really really ill.
This week’s post features my good friend Lucy Watts (MBE) no less…
I have known Lucy for several years since working for a young adult hospice in Essex.
Lucy has been ill since she was a teenager, and although she was diagnosed with Ehlers Danloss Syndrome, her exact diagnosis remains a mystery to every medical person she encounters.
Lucy requires 24 hour care. When I met her, she used to be able to stand up and move to her wheelchair but now she can no longer weight bear at all and needs a hoist to lift her out of bed and into her chair.
She cannot eat and is fed through a tube which goes directly into her heart. The infections and sepsis this can cause are a constant source of worry and discomfort. She is always in pain and you can tell that just from her face even though she tries to hide it.
But Lucy is the most inspirational woman I know. Absolutely determined to make a difference to the world, no matter how short her life may be (she’s 24) she has become a public speaker, a disability campaigner, a spokesperson for the NHS, an ambassador for many charities and she was awarded her MBE by Prince Charles.
Requiring round the clock care is hard enough, but at home, this is done almost all of the time by her wonderful Mum Kate. So when Lucy heard about the chance of a holiday near Norwich, she knew it would give them both an amazing break and change of scenery that they really needed. It also gave me a chance to catch up with them both and Molly the dog!
Where did you stay in Norfolk?
We stayed in Berwick Cottage in the village of East Harling, it’s a pretty village and easy to get to lots of destinations in Norfolk.
What was the cottage like?
It was great! We really enjoyed our stay. The cottage can sleep six people, two with disabilities and four family members or carers.
As a wheelchair user, how easy did you find it to move around the cottage?
The living room is big and spacious and you can get out to the garden, there’s a ramp I can use. Mum and I slept in the disability bedroom which has two profiling beds and a ceiling hoist which can carry you straight to the disability bathroom. The bathroom has a full wheel-in shower and a hi-lo bath.
I got upset at the thought of coming home due to our bungalow not being set up for my needs, I’ve had a week of total freedom to sit in any room (including the kitchen!! I can’t get in our kitchen at home), to move independently through the house from room to room, to independently access the garden, and to be able to move freely around the property.
My main problem was that the ceiling hoist was a bit too slow for me. It’s very painful for me to be in a hoist for too long. I think it just needs updating and I’m willing to raise money for this.
Did you enjoy your holiday base?
Yes, it was so good to be within easy distance to new places. We visited the horse sanctuary as I love horses.
We’ve had the best week, a much needed break, having fun, spending quality time together, making memories, seeing friends, and enjoying ourselves without the usual stresses and strains (it hasn’t been stress free, but minimal compared to at home). It’s just been amazing, everything we wanted/needed and more, we’re already plotting our return to this beautiful property and location.
It makes such a difference to me and my mum. She cares for me at home 24 hours a day, all year round. To get the chance to visit a new place, to go somewhere different, to sleep, eat and enjoy somewhere different, it’s just amazing. It’s a proper break for both of us.
Who did you book the holiday with?
A friend told me about a charity called The Lin Berwick Trust. Lin had cerebral palsy, she was blind and wheelchair bound but wanted to go on holiday. Despite trying several holiday homes for the disabled, she couldn’t find anything to cope with her serious disabilities, so she founded a charity to create purpose built holiday cottages with the aim of allowed seriously disabled people to have a relaxing holiday. Berwick cottage in East Harling was the first one.
If you would like to find out more about disabled holiday accommodation or you would like to donate or raise funds for the charity, please follow this link:
The Lin Berwick Trust: https://www.thelinberwicktrust.org.uk