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Resilience and determination in hospital with a long-term health condition

Rebecca Herbert is a determined, resilient woman who doesn’t let her diagnosis of Multiple Sclerosis (MS) define her. She shares the story of her 8-month stay in hospital, which she hopes will inspire others to keep positive during their hospital admissions.

She left the hospital on the 5th of November 2021 and wanted to share her story as part of her celebration of having been home for a year.

Hospital admission

Last year was almost my last but with determination and support, I made it through. I was diagnosed with MS when I was 20 and became a wheelchair user shortly after.

I decided being a wheelchair user wouldn’t stop me from living my life and used my determination last March when I was rushed to hospital after my parents found me collapsed at home.

I was taken to intensive care where it was found I had aspirational pneumonia and a chest infection. After many tests, I was finally transferred to a ward and discharged after six weeks.

Tracheostomy

Two weeks later, I collapsed again and was rushed back to the hospital where I was given oxygen, a feeding tube and a tracheostomy.

Nurse in PPE

A tracheostomy is a surgical procedure where an incision is made into the front of the neck so a tube can be inserted into the windpipe, which allows the person to breathe through this and not their nose.

I was then moved to the high-dependency unit where Grace, the speech therapist, arranged for me to have a test looking at my throat.

I had multiple instrumental swallowing assessments (videofluoroscopy and fibreoptic endoscopy) to help guide secretion management and recommencing oral intake. This also included a review from an Ears, Nose and Throat (ENT) clinic at an external hospital.

The results showed I had a weak swallow and it would be dangerous to start eating. The ENT doctor gravely told me I had been “coping but had fallen off the mountain but being saved by the nurses before reaching the ground!”

He wasn’t sure if I would ever eat or speak again – I just wanted to be normal!

That evening, the nurse wiped away my tears and assured me I would be okay. I was worried about catching up with my friends (for the first time since Covid!) It was a scary time.

Leonie, the trachy nurse came around to make sure everything was okay and we would speak about the food I was missing!

Supportive friends

Rebecca with two Friends

My cousins and good friend, Nod, often came to visit as well as my best friend Nicky. We often enjoyed afternoon tea and had been planning to book a new one so it was upsetting to think it may be impossible.

Hospital Recovery

Grace began to show me throat-strengthening exercises – effortful swallowing and Masako. I had physiotherapy with Jess regularly. She would work with me on stretching exercises. I also had an OT named Laurette who taught me hand exercises.

I worked for a long time focusing on my ability to use my electric wheelchair, which was really important to me.

I learnt to control my wheelchair through a combination of exercises and using a shake-drained specialist joystick to practice playing games on. This mimicked wheelchair control.

As time went on, Grace worked out a plan, which allowed me to have my voice for a set time. I was also allowed small portions of food.

Every morning the doctors did the ward round to check on all the patients. By the end of the summer, they wanted to make a decision about the trachi.

The decision had to be made whether to leave it in or take it out. Leaving it in could lead to infections so I was very happy when it was decided to take it out! The date was decided upon. I would stay an extra week in the hospital afterwards to check everything was ok.

My final day was on Fireworks Night and the medical teams that treated me stood in the corridor to clap while ’Freedom’ by George Michael played!

Rebecca and three nurses

Grace said; “I was very happy to hear that Rebecca was able to enjoy her fish and chips and Prosecco when she got home, something that I imagine felt like a long way off during her lengthy hospital admission and tracheostomy wean.

In the words of one medical professional, Rebecca ‘climbed the mountain’ and it’s great to get updates about all of the things she is enjoying in life now, like going to the theatre and out for Italian food.”

Positivity

Being optimistic and patient got me through my long hospital stay.

This photo shows Rebecca sitting in her wheelchair at home. It is a selfie she has taken and she is slightly to the right of the camera as you look at it. Rebecca has red hair, blue eyes and a wide smile.

Laurette said: “We had particular fun always discussing Rebecca’s big plans on places to go in her wheelchair once she had left the hospital, including the pub and theatre! I was pleased to hear Rebecca has now ticked all of these off!”

My iPad allowed me to watch things and keep in touch with people but it was family and friends who visited and sent voice notes and messages who helped me stay determined and positive. Thank you to them and the staff at Kings College Hospital.

By Rebecca Herbert

More on Disability Horizons… 

Lucy Currier

Writer and editor for Disability Horizons and blogger at Inclusive Living Concepts. Hobbies include: dancing, reading and attending theatre and comedy shows.
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