Phoebe talks to us about being diagnosed with MS during lockdown.

Phoebe was diagnosed with relapsing remitting MS in 2020. In this blog she tells us how difficult it was to receive an MS diagnosis during the pandemic and how she has learnt to come to terms with her new life.

My symptoms started to appear in July 2020. I had this skin crawling sensation across my skull and half my face went completely numb. I also began to lose sight in one eye and I couldn’t find my balance. Overnight I was suddenly bed bound. I had multiple visits to the GP who decided it was a nasty reaction to shingles, but my family knew something wasn’t right. One day it got unbearable. I was rushed to A&E where I was left in a room on my own for eight hours due to Covid-19 restrictions. I had blood tests and a CT scan followed by an MRI scan.

When the neurologist sat me down and showed me my brain scan result, all I could see was this large white mark on the scan shining out at me. It was like an out of body experience and I remember feeling like I was going to faint at the shock. I was then wheeled down to have a lumbar puncture; I was told to get into the foetal position and a large needle was inserted into my spine.

It felt like some cruel roulette and I was the unlucky winner of a lottery that I had not entered into.

When the neurologist said the words ‘multiple sclerosis’, my immediate three questions were ‘Am I going to die?’, ‘Am I going to be disabled?’, ‘Can I have children?’. It felt like some cruel roulette and I was the unlucky winner of a lottery that I had not entered into. I was angry and began grieving for the life I thought I would now never have. Images of being in a wheelchair, bed bound, and severely disabled flashed in front of me. I had no understanding of what multiple sclerosis was, but I knew it didn’t have positive associations.

The week before I was rushed to A&E, my divorce to my ex-husband who had walked out on me earlier in the year, had been finalised and the no longer valid vow of ‘through sickness and in health’ hit me like a tonne of bricks. Here I was at age 32 with a life shattering diagnosis and with no partner by my side along with the horrifying realisation that I had a new life partner; MS and it would be with me until death do us part. That was a hard pill to swallow.

Being diagnosed in lockdown made it even harder, I couldn’t see friends and I found myself with a lot of time to think about everything; the diagnosis, my future and I was hyper aware of any little symptom. Whilst my friends were going for baby scans, I was going for brain scans. 

Whilst my friends were going for baby scans, I was going for brain scans. 

I very quickly learnt that it was not helpful to try and predict the future or panic and worry about future scenarios. I try to live in the moment and focus on the present and appreciate the small things; the smell of fresh coffee, a lovely sunny day or belly laughing down the phone to my best friend. I now live on my own in a lovely flat full of my favourite art and with my cheeky miniature sausage dog Noodle who brings me bundles of joy and gives me a reason to get up every morning. We both have short legs so we are well matched for walks.

I was raised in a house full of laughter and having a sense of humour has helped me cope with the last year. If you can’t laugh that you get diagnosed with multiple sclerosis after getting a divorce at only 32, you would cry. When I started my drugs, I celebrated by photo-shopping a party hat and stocking covered legs on the legion on my brain scan. 

Due to Covid-19 delays, it has been eight months since my diagnosis and I am still waiting to be referred to a physiotherapist and psychologist and I have only just been given access to the drugs that will hopefully slow down progression of this disease. However, I feel extremely lucky that I have access to medicine that so many before me did not have the benefit of and I am appreciative to the researchers who continue to pave the way forward to find a cure for this disease. 

I am determined not to be embarrassed or shy about my diagnosis, I think it is really important younger people share their stories and raise awareness of this disease so newly diagnosed people in the future don’t feel so alone or scared. I recently discovered an amazing MS Support group for 18-35 year olds called MS Together, that includes bottomless brunches, zoom Bingo nights and lots of giggles with people my own age – it was refreshing to all have something in common rather than feel like the alien with the label of MS.

I no longer feel like my life is over, but has only just begun. I am counting down the minutes until lockdown is lifted, so I can have that hug with my best friend, drink that cocktail in my favourite restaurant and visit my favourite art galleries.