Five years ago, Stacey, now 27, was told she had an incurable illness that would gradually and devastatingly affect all her organs and muscles. Keech Hospice Care has made her feel like a normal 20-something, even organising her wedding day.
“I was 17 when we first noticed something was wrong but the terrifying moment that changed everything came when I was 19 – overnight, I lost the full use of my legs. You can’t imagine it: all in a heartbeat, not being able to walk normally anymore.
Five years ago, when I was told the diagnosis was mitochondrial disease and what it would mean, I couldn’t take it all in. I just wanted to know when I would get better. But the doctor said, “I’m sorry but you’re not going to get better from this.”
On the journey home, I was just shouting in the car while my mum and dad were crying because they realised before me what would happen. It was only later that night that it sunk in and I cried, letting the anger, sadness and fear wash over me.
Now I’m trying to live the normal life of a 27-year-old as much as I can, but it’s hard. I had to give up my job as a hairdresser. I also used to be a dancer – I did shows and competitions, took exams and even taught a dancing class. But now I’ve lost the ability to bend my legs and I’m bent over when I walk. I use a wheelchair most of the time as I get tired and breathless easily.
I first went to Keech Hospice Care as an out-patient in summer 2017, mainly for help in controlling the pain. Since then, I’ve stayed at the adult unit for around two or three months while they brought my symptoms under control. They were able to fit a tube into my stomach so I could eat as well as get rid of a lot of my pain and stop me from constantly being sick. The changes to my medication made a big difference.
Before I arrived, I remember thinking the hospice would be a morbid place, but my opinion changed the moment I got through the doors. It was nothing like being in hospital. My room at the hospice was just like being at home with a recliner chair I could sit in rather than always being in my wheelchair or bed.
The staff made me feel relaxed and I knew what they were doing was best for me to make me more comfortable. Nothing is ever too much for them.
I had a bath every day, which wasn’t easy because it took three of the team to move me into it. I was also able to continue the complementary therapies I’d been having as an out-patient. But on days when I didn’t feel like going to the therapy rooms, the therapist would come to my room instead to give me reiki or massage.
It was great that my family and friends could stay with me at the in-patient unit and I was also able to have my dog, Ella, visit, which meant everything to me. I missed her so much while I was in hospital. At Keech, she could stay on the bed with me. I don’t think I ever looked so well as I did on the days Ella came to visit.
In March 2018, Keech made the most brilliant day possible: my partner Mumin and I got married at the hospice. The nurses helped us prepare everything including a pizza hen party! They organised for a bridal shop to bring wedding dresses to the hospice so I could try them on in my room, then helped with arrangements for the dress fittings. On the day, they helped me get ready and made sure that any medical equipment on me was placed so you couldn’t see it in the photos. On that one day, I felt so well, and it wouldn’t have been possible without Keech Hospice Care.
I think before I went to the hospice, I was ready to give up. But after staying there, I began to see things in a completely different light. I was so much more positive about my illness. I know I will never get better, that there isn’t a cure, but Keech showed me I can have a good quality of life, experiencing so much, like family birthdays and other occasions.
One of the best things the hospice gives me, though, is the chance to talk to someone about the future. With my family, when I talk about what is going to happen to me, that I am going to die, I know I’m upsetting them. But I need to talk about it – I want someone to know what I want when the time comes. The staff at Keech are caring and compassionate but not in any way patronising, and it’s so good to speak to people who really understand. Keech is pretty amazing like that.”
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