No one was there to catch me – at first…
Allison Ellerby from West Byfleet shared her story with us for a recent Hospice at Home appeal.
Last year she was diagnosed with Multiple System Atrophy, a progressive, degenerative life-limiting disease.
As a big fan of ‘Alice in Wonderland’ she wrote a powerful poem about her emotional journey when she received the devastating diagnosis, which you can read here:
Allison in MSAland, by Allison Ellerby
As my husband Nick and I walked away from the neurologist I could still hear the words, progressive and life-limiting neurological condition called Multiple System Atrophy.
We clung to each other in the corridor of the hospital I, metaphorically speaking, started to tumble very quickly down a long dark tunnel. For days I tumbled and rolled desperately trying to keep hold of my darling husband’s hand as he tumbled too. My parents reached out to help and started to fall with me, it was terribly frightening.
Like in ‘Alice in Wonderland’ during my tumble I tried to grab at things and people along the way, desperate to be rescued. I flung open doors as I fell, trying to ask for help, I grabbed phones and shouted down them to people that didn’t seem to hear me.
Further and further I fell and was aware that my loved ones were falling behind trying to catch me. All of us getting hurt and bruised along the way.
Help! I shouted into the darkness.
After some time little bright lights started to appear. Then I realised they were people. Special people! I met a new GP called Lucy who helped me open the right doors. Very quickly a bright and sunny door was opened and I stopped falling, landing in a crumpled heap. Where did this door lead? I had arrived somewhere very special indeed; Woking Hospice.
Woking Hospice, what an amazing place. Full of exceptional people. My first contact was a call from a wonderful lady called Sandie, the Community Clinical Nurse Specialist. Suddenly I felt heard and realised she understood my distress. She arranged to visit and something in the words she used calmed my panic.
Allison is still visited by the community team and also attends the Day Care Unit on a weekly basis where she says the benefits are endless. “Volunteer June picks me up on a Tuesday morning to bring me to day care and it’s great to start the day with a friendly face. A cup of tea and a very warm welcome on arrival is very nurturing. I then enjoy a healing treatment by therapist Marilyn, which is wonderful as it relieves my tremors. There is a lot of laughter from all staff, care workers and fellow attendees, and I have made friends with many wonderful people. Last but not least, I have to mention my wonderful cousellor Susie, who comes to see me at home once a fortnight. She’s helped me so much in coping with my terrible condition, and she’s also arranged for one of her team to meet my husband on a regular basis to give counselling for him as a carer.”
Read more about our Hospice at Home service here.