Lilly's story

Lilly Lock, 57
Lily has scleroderma, a chronic disease that has badly affected her lungs and her breathing leaving her needing oxygen 24 hours a day. There is no cure and her only hope for a change in her condition is a double lung transplant, although she isn’t very hopeful that this will come any time soon.

Lilly was referred to the hospice by the Royal Free Hospital as they felt she could benefit from physiotherapy. Her breathing problems left her prone to panic attacks and when Lilly first came to the Hospice for an assessment she was in a wheelchair. Her lung problems meant she was unable to operate it herself and she had to be pushed by a family member, leaving her feeling really frustrated that she had lost her independence. She was also scared to get out of her wheelchair.

Taking control
After two sessions with our physiotherapists Matt and Kirsty, Lilly was able to control her breathing rather than letting it control her. She joined our In Control of my Breathing (ICon) programme, where as well as getting clinical support she was able to meet other people in the same situation, make new friends, and discuss her fears.

Once Lilly learnt how to breathe properly, she realised that walking didn’t have to be a race. Rather she could see it as getting from A to B and something that she could do in her own time. This new way of thinking helped her regain her confidence, control her panic attacks and get out on her own for the first time in two years.

The first steps
A breakthrough came when Lilly was able to get out of her wheelchair. 

“The first time I walked into my ICon group without needing a wheelchair I was thrilled. I thought, Hallelujah, I’ve done it, and everyone in the group, including the staff were really happy for me. They gave me a big round of applause which was lovely.”

Lilly has also achieved a major milestone recently by going swimming for the first time in years.

Relaxation classes at the Hospice are also a vital part of Lilly’s rehabilitation. She also has counselling with Chris, a psychotherapist at the Hospice. “Chris is a delight, I don’t think I would have coped without her, I can tell her things that I can’t talk to my family about and
this makes me feel lighter somehow, she’s a special lady.”

Lilly’s future remains unclear but she knows that St Joseph’s has given her a lifeline when she really needed it and has given her freedom that she never thought she would have again. For that she is really grateful.

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