Caroline's story

My name is Caroline, and I’m 53 years old. I have Neuromyelitis Optica.

I used to have a busy life; working in an academic role at a university, and enjoying writing and performing, before I had to give up most of my hobbies to become a carer for my mum, who had dementia.  But in April 2022, my life changed forever. I gradually became ill with a combination of symptoms that I (and my doctors) didn’t realise were classic signs of a neurological disorder.

I desperately tried to seek help from my GP, 111, and A&E at two local hospitals, as my health and mobility deteriorated, as I was scared that I would no longer be able to care for my mum.

Unfortunately, it was only when I collapsed for the third time (after two 999 calls), and had to call 111 to beg for help, that I was taken into hospital, where I remained for four months. During this time, my lovely mum sadly passed away.

I eventually got a diagnosis and gradually had to relearn how to walk and feed myself. I was sent home with some mobility aids and no job. I was left to try to manage living in a completely new way, as a wheelchair user who depends on others for help with daily life.

I think I’m a caring person and have a few good friends who I love to socialise with. I enjoy going to the theatre and listening to audio books. I also love singing and shopping, and I talk a lot! I enjoy being outdoors on my mobility scooter in fair weather, and I tend to prefer tearooms to pubs.

Neuro Social online meetings on a Thursday are hugely helpful. We get to share our experiences and challenges, as well as difficult emotions, in a caring environment. It doesn’t matter that we don’t all have the same diagnosis, because we still empathise with each other. We also have a laugh along the way. It’s an important part of my week, and I hugely appreciate the work of the foundation’s employees who lead and facilitate the group, as well as the understanding and support of other participants.

I like to raise awareness of neurological symptoms, such as extensive pins and needles, muscle spasms, changing sensations in the hands and feet, and weakness in the limbs, as it seems they often go unrecognised or are misunderstood. I also like to share my experience of being in hospital for a long stay, and the importance of strong relationships with people who are willing to listen and understand your needs and limitations. Adjusting to a new way of life has been challenging but also fascinating at times. I’d like people to know that you can still live a life which you feel is worthwhile and find a new joy in simple things, despite acquiring a disability and having to rethink and redesign your everyday life.