Hello my name is Sarah and I’ve been coming to the Charity for the last few years. It took me quite a while to pluck up the courage to come along as I wasn’t really sure what the Charity was all about and I thought it was just a place for older people. I was chuffed when I went in and realised that all ages use it!
I’m diagnosed with FND (functional neurological disorder), dystonia and alexithymia. The dystonia was acquired when I had an accident at work 5 years ago (I worked helping integrate children with complex learning difficulties and care needs into mainstream education). I loved my job and I felt a real sense of the loss for the life I had before my diagnosis. I can’t drive anymore, or enjoy the social life that I had.
My conditions mean that my mobility and general movement is affected and I live with spasms, seizures, pain, blurred vision and extreme fatigue on a daily basis. I use a wheelchair to get around most of the time and my sleeping is interrupted by episodes of breathing difficulties (brought on by the seizures) that mean I’m in a vicious cycle of sleep deprivation, never sleeping for more than an hour at a time. My partner has had to give up work and become my full-time carer and I rely heavily on him, especially at night when my breathing will sometimes stop. I’ve also had to move into adapted housing.
I love coming into the Charity as no-one judges you and I’ve been able to build up my confidence again as well as find my sense of humour; my giggle is famous and everyone knows when I’m in the building! I’m starting to build a new life for myself and I’ve joined in with craft, art and photography classes. I have a creative side that never existed before my accident and I’ve drawn a series of charcoal drawings that the Charity sell in their shop to raise funds. I’m an artist now!
Being isolated was a real problem for me before I came to the charity, friends drifted away and I was scared to leave the house in case people stared at me (my spasms can look a bit scary to other people) but I’ve made lots of friends at the charity and I love the social events that they put on.
Life has thrown a new problem at me recently: due to my breathing problems at night I’m in need of a specialist bed that can keep me propped up so that I don’t lose consciousness, or turn blue and frighten the life out of my poor partner. They’re very expensive though (£10k!) so the Charity have helped me set up a GoFundMe page (they really do help you with anything they can here, they’ve made such a difference to my life). My story probably sounds a bit sad to most of you, but I’m determined to get on with life. There’s always someone worse off than you and you have to make the most of every minute and not let it get you down.
I’m surrounded by the best of people at the Charity and I’d say to anyone don’t sit at home and dwell on what’s happening to you, come and have a laugh with us at The Brain Charity!
If you’d like to help Sarah raise funds for her new bed visit her GoFundMe page here: https://www.gofundme.com/f/a-bed-for-sarah