MS Letters: To myself, Zoë, 10 years ago

Mon 03 November 2025

In a moving and candid letter to her younger self, Zoë outlines the challenges of her life with primary progressive MS. And how loving support and a new treatment have helped her do the things she loves, discover new passions, and give back.

It’s funny the things you take for granted. One day they’re a given, the next they have become a challenge.

You always presumed you’d be able to walk and run, to dance, to climb the stairs. To go to the pub and drink until you fell over, then be able to get back up to laugh it off. To lay comfortably in bed for the whole day if you wanted.

You always thought you’d feel confident in how you look, and stand tall and proud.

To be able to travel and sightsee without thinking twice about it. To feel sexy and admired. To make the most of your limitless energy and ability to multi-task at break neck speed. To go shopping for hours, jump on a train, go for a leisurely stroll or burn some calories at the gym. You will learn that it’s vital to do these things while you can.

Like walking through a sea of thick mud

By the time you’re 40 it will feel as though you’re in a body that isn’t yours.

That you’re constantly walking through a sea of thick mud. Your balance will have disappeared and if you kneel down you'll struggle to get back up. You will ache and feel immeasurable back and leg pains when in bed. You won’t be able to get comfortable, no matter how hard you try. Your legs will twitch and be constantly restless.

You’ll constantly have pins and needles in your hands and feet and sadly won’t be able to walk unaided. Your legs will feel as If they are too long to pick up and you’ll drag your feet when you walk.

Your walker and wheelchair will be your new best friends.

You’ll get to know fatigue and brain fog

A restful night's sleep will be a thing of the past. You won’t believe how it feels it to be in bed for eight hours, only to get up feeling exhausted. Constant fatigue will make doing anything a mission.

You won’t have heard of brain fog. But you’ll understand what it feels like soon enough. Not being able to think quickly enough or process new information and instructions will become normal. Being unable to find the right language to explain things or putting words in the wrong order will become normal.

Having people frustrated or exasperated with you will become daily occurrences. They won’t want to be that way, it’s hard for them too. Needing to be close to the loo at all times will be very restrictive on what you can do and when. You’ll find out MS is different for everyone. Each person needs to adapt to their own situation. It’s tough.

Adapting to a new normal

In your head you will feel just the same and want to achieve as much as you always did. It’s hard to imagine how much your confidence and self-esteem will be knocked. Losing independence will hit you hard, giving up work will be one of the hardest things. But you won’t be able to anymore. Really.

I don’t want you to feel too sad or scared of the person you’ll become. The same carefree girl is still inside.

You’ll still be supported by a wonderful husband, your soul mate and true love.

You’ll have two wonderful sons, who are kind, loving and inspirational.

You’ll be surrounded by loving friends and family, people who go out of their way to be helpful and to make you feel better about yourself. Your loved ones and friends will always mean the world to you. There’ll be new companions and family you haven’t met yet. You’ll be in your dream home and be really proud of what you have.

Life is still full of love and growth

You’ll become a great cake maker (hard to believe now I know!) You’ll still be challenged by doing various academic courses, your desire to learn will never change. You’ll be able to go out on your mobility scooter to walk your loving dog and experience the lovely outdoors.

You’ll become an enthusiastic and competent gardener. You’ll go to fabulous music concerts and social events. Have lunch with friends and eat great food in amazing places.

You’ll still travel and be able to see the world. Just more slowly, cautiously and planned than you’re used to.

Research will bring you a treatment

Thanks to research, in the next decade the first treatment for early primary progressive MS will become available, and you're eligible to take it. Since you had the ocrevus (ocrelizumab) infusions you haven’t had any new lesions. It'll give you a new lease of life and help you keep doing the things you enjoy.

You’ll want to make a genuine difference to other people’s lives and you get involved with some amazing charities.