'I thought I’d never be happy again but I was wrong'
Henriette Shulungu, patient at St Francis Hospice
- Credit: Archant
Henriette Shulungu felt as though her life had stopped when she was diagnosed with multiple system atrophy (MSA) in 2016. Here Henriette explains how through faith; the love of her husband Gommaire and their three daughters Jessica, Victoria and Clarissa; and care and support she receives at Saint Francis Hospice, she has overcome her fears and now believes her life is more meaningful.
Before I was diagnosed with MSA, I was a very strong woman. I had been working for 17 years as a development worker and bilingual advocate for men, women and children who had been affected or infected by HIV.
I had no other choice but to leave work when I was diagnosed with MSA as my basic functions would let me down - I was no longer able to perform like I once did. I felt as though my life had stopped. I thought I’d never be happy again but I was wrong.
I have nearly lost my handwriting as it changed drastically. Dizziness has dominated my body so I tend to lose my stability and this makes it hard for me to concentrate.
When you end up experiencing and living with a disease, it’s different. We often think of it as something that happens to other people and can never happen to us.
But, if it does, you don’t have to give yourself to the disease, because there is still life that needs to be lived and you have to take control over it.
Saint Francis Hospice is a very special place for me. It is where I go to get some strength and where I have received so much love.
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For me, it is a place where you’ll be heard and no one will judge you. It’s a place that gives you comfort and peace.
I regularly meet with Sue Spong, who is a counsellor at the hospice, and she has given me so much joy. I really feel like this lovely woman gave me another way to love myself again.
Some people feel like they want to hide away when they are unwell, but it has helped me so much to talk about what I am thinking and how I am feeling.
The community nurses have also been there to care for me. Everyone I have met there has really listened to me and made me feel like a human being, and that my thoughts and feelings matter.
I would say that life is more meaningful for me now. I don’t think about this disease every day as it would bring me sadness.
Instead, I focus on how wonderful life is.