This is my story.
Mental Health Awareness Week is such an important time, not just to speak out, but to truly be seen. I want to share my journey – my realness, my healing, my grieving. Mental health isn’t just a moment we experience, it’s a continuous thread that weaves itself through the good days and the really tough ones. And that’s exactly what I’ve lived, and am still living.
Some of you know about my sister Amanda. She has Multiple Sclerosis (MS), and in 2020, she had a life-changing fall down the stairs. She was admitted to hospital during the height of the COVID-19 pandemic, and for seven long weeks, we weren’t allowed to see her. Seven weeks of not knowing, not hugging, not being able to help. Before the fall, Amanda used a walking stick and a mobility scooter to get around. She was fiercely independent in her own way.
When Amanda finally came out of hospital, we managed to get away on a little holiday, still within the COVID rules, and that’s when we noticed something was wrong. Something more had happened. Her bowels had stopped working. Her mobility had deteriorated further. At first, we put it down to being in bed for weeks in hospital. Understandably, the NHS staff were overwhelmed and simply didn’t have the time to get every patient up and about daily. But things didn’t improve.
Amanda had just moved into a bungalow near me with her husband and son – Oliver was just 9 at the time – and when we returned home, life changed again. Me and Mum had to jump into action. The home needed adaptations, and social workers were involved to provide equipment and guidance. But it soon became clear Amanda couldn’t be left alone anymore. We had to bring in carers. And from then on, her condition continued to decline. Fast.
The doctors even said they’d never seen such a rapid deterioration in an MS patient.
From walking with a zimmer frame, Amanda now spends most of her time in bed. She can get up every other day, for just two hours, hoisted into a day chair. She is PEG fed, after choking risks became too great. She no longer eats or drinks by mouth, not even water. Her arms don’t move anymore. She can’t read. She doesn’t remember much of her past. She has a catheter and a stoma bag, managed by her wonderful carers, and by us, when needed.
She used to have a weekly shower, in a bathroom adapted for a wheelchair and hoist, but even that’s become too much. These days, she has her hair washed in bed and bed baths twice a day. It’s personal. It’s intimate. It’s emotional. And it’s our normal now.
And we are facing something ongoing that is hard: her voice. Amanda’s speech is now going. When she’s tired, which is often, her words come out slurred, and sometimes we can’t understand her. We know that one day, her voice will go completely. That’s a reality we’re slowly trying to come to terms with. But for now, we take videos. We make memories. We tell her jokes to make her laugh. Because right now, that’s enough.
Mum retired early to care for Amanda. We see her nearly every day between us. The carers are like family, truly incredible people, but it’s still a lot.
My sister can no longer do the things we take for granted every single day – things like scratching your own nose, eating your favourite food, or even holding your head up in a chair. Some days, she just doesn’t have the energy for that.
Imagine that. Truly imagine that.
And yet… Amanda smiles. Every single day. That smile? It’s powerful. It’s beautiful. It’s brave.
She is my bloody hero. My favourite person in the world.
The MS has affected her memory and cognition, but she hasn’t lost her humour. She still finds a way to make us laugh. And that’s why everything I do, I do for both of us. I live for both of us. I step out of my comfort zone because she can’t.
Yes, I’ve grieved. Massively. But there’s no room for “what ifs.” Instead, we celebrate the milestones we have – birthdays, Christmases, quiet afternoons filled with laughter. Because one day, we won’t have those. So we hold onto them now.
And let me tell you about another hero: our mum. What an incredible, selfless, strong woman she is. The glue that holds us all together. She never stops, never complains, and gives her whole heart to our family. She deserves a medal. Or ten. And I am so proud that this amazing woman is our mum.
Today, Amanda is 44. She is living with this disease. And she is still smiling.
She is an inspiration in every sense of the word.
Now… a big part of my own healing journey has been crochet. It’s more than just a hobby – it’s been my therapy. It got me through some of the darkest days and continues to be my sanctuary when things feel too heavy. Crafting with my hands helps quiet the storm in my mind. And you know who gets most of my blankets? You guessed it, Amanda!!
The “My Heart Belongs to You” blanket was made for her – designed with her in mind. Because she holds my whole heart.
And I can’t write all of this without mentioning the biggest supporters in my daily life – my incredible husband, our beautiful girls, our sweet pups and my best friend. The love I have for them is more than words can ever say. Just having them there, just their presence, their hugs, their laughter, their wagging tails and unconditional love – it all helps me keep going. They ground me. They lift me. They are my joy on the hardest of days. I don’t take that for granted for one second.
Mental health awareness needs to be present in our everyday. It needs more compassion, more understanding, more listening. Because so many of us are carrying invisible stories behind the smile.
This is mine.
To those who are struggling – I see you. Be kind to your mind. Hold space for your grief. Celebrate the small wins. Love hard. And never be afraid to tell your story. Because your story matters.
This is mine.
And I’m still writing it.
One of the most treasured things we’ve done together was a photoshoot with Gemma Suckley Photography back in 2023. The pictures capture the joy, the love, and the bond that we hold so tightly. Amanda has deteriorated since then, but we will cherish these photos forever.
With love, Helen x
💜