Owning up to my worst fears about MS was such a relief

I was finally diagnosed with MS seven years ago. I’m now 72, and the first little ‘episode’ I had was way back in 1968.

Over the years I’ve had strange feelings of fatigue and numbness. Times where I sat down, feeling fine, and then realised I couldn’t stand up again. I went almost totally blind temporarily after giving birth to my youngest daughter, Binky in 1990. I was diagnosed with optic neuritis and told to go home and rest and it would get better.

You can imagine ‘resting,’ with a brand-new baby, two older children, two dogs, and three horses… I managed though, as I have done throughout my life.

I needed a diagnosis – but it was still scary

Seven years ago it was my gynaecologist who noticed I was walking strangely, when I arrived for a routine check-up. He gave me the number for a private neurologist and she saw me two days later. Finally, somebody listened.

After having various checks, I went back to the neurologist’s office. She asked me to sit while she went through her findings. Her computer flashed up with a picture of my skull. I’m not in the least medical, but even I thought it was weird to see so many white patches on my brain.

Read more about how MS is diagnosed

I can’t stress enough how wonderful it was to get a diagnosis, after so many years of having an invisible illness. Friends and acquaintances had never believed me and I had been told everything from I ‘needed to rest’ – to ‘I needed to rest less’! I began to wonder if I was exaggerating my symptoms, but I knew how my own body felt.

So, suddenly this was the moment I had needed all my life. But hearing what the neurologist had to say was scary. She began to explain what MS was, and the possible implications for me.

All the years I had waited for answers finally hit me.

I didn’t want to admit I was terrified

The next few days after my diagnosis were surreal. My daughter Binky gave birth to India, my lovely little granddaughter. This was closely followed by my other daughter Anna-Louise having Freddie, my gorgeous, first grandson.

I started receiving lovely messages from people about my MS diagnosis. My Instagram friends were warm and comforting.

I read everything, took every supplement, gave up caffeine and alcohol. Ate some weird things…I don’t think I wanted to accept the possibilities that had been explained to me.

Quietly, the MS marched on. I sold my car. Bought another one and had it adapted. Organised a blue badge, and my own parking spot.

I did everything, except admitting the truth: I was terrified.

I realised I wasn’t alone in this

Speaking to other people with MS on Instagram was such a relief! I could be honest. Cry, if I needed to, own up to all my worst fears… And they took the whole thing as a simple, daily occurrence, totally in their stride.

They gave me the numbers of lovely people to contact in times of fear, as well as numbers for practical advice.

They made me realise I wasn’t alone in this. I didn’t have to pretend to be cool with the situation or optimistic for the sake of others.

Sitting down and relaxing, and sleeping when I needed to - well, as much as I could - was advisable. They helped me understand the benefit of exercise. I had already been given the physiotherapists details by my neurologist.

From that moment on, I was never alone.

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Support from lovely friends with MS

I had worries, of course. Complications like moving house and finding a flat on the ground floor with a lovely garden. I have found it difficult to find landlords that would accept me, and all complications and kit that would inevitably follow.

Read more about renting and asking for adjustments to help with disability in England, Scotland, Wales and Northern Ireland. 

To this day I feel I’ve had some wonderful guardian angel hanging around me who has made life easier than it could’ve been. I found my flat, lovely landlords, and a lovely bunch of supporting, amusing friends.

Many of these friends are through the MS Society’s West London group. They range in age and capabilities, and are always up for a new idea for celebration and fun.

I’ve now got a beautiful British blue shorthair cat, and a glorious little miniature wire-haired Dachshund dog.

I’ve had down days – but more good ones

Like when I realised I could no longer drive. And my beautiful, beautiful car had to go. With its personalised plate - so naff but I’d always wanted one.

I now struggle badly with brain fog. I’m not able to walk and have dreadful bladder problems. This has cut down my ‘flying speed’, as one dear old friend would say.

Apart from that, I’m doing OK.

I love to write, and feel that it’s one of the joys available to me. I have now lost the use of my right arm, but thankfully I can dictate with my voice to my phone. Although the brain fog makes this difficult, too.

Overall, the bad days have been overridden by the good.

None of us know the future

I’ve been accused of being incredibly irresponsible SO many times, by some friends who thought I should change my lifestyle and slow down. Give up the partying, skiing and horse riding. But a leopard can’t change its spots overnight, even if it truly wanted to!

I don’t know where my future ends, none of us do.

I make my days bearable with a sense of fun, optimism and a bit of a devil-may-care behaviour. Plus surrounding myself with the best upbeat, can-do individuals. These things help on even the bad days.

I would say to anyone with MS that it really isn’t the end. You might find some things difficult, but other amazing things can come into your life. You can be astounded by wonderful support, understanding and humour. And this carries you through.

Get support

Our MS Helpline gives emotional support to anyone affected by MS. Call 0808 800 8000 for free. We’re here Monday to Friday, 9am to 7pm except bank holidays. We also have a confidential email service: [email protected]. So drop us a line and we’ll get back to you within five working days.