“I may have MS, but MS doesn’t have me.”

My MS journey

I was diagnosed 10 years ago with relapsing remitting MS. My symptoms started 13 years ago, but it took three years to get diagnosed after countless tests. I’ve had so many MRIs of my brain and spine that I now fall asleep during them despite the noise. I’ve had several relapses, been on corticosteroids perhaps six or seven times. I’ve had optic neuritis multiple times and sported an eye patch. I've lost my voice a few times and gone for eight months without speaking and undergone speech therapy. Now I need a walking aid on standby, so I’m trying to find a really stylish stick. If Selma Blair can rock a stylish stick, so can I!

That sounds like a lot, doesn’t it? Having to live with MS takes a great deal of adjustment. It took several months for it to sink in, as I had no idea what MS even was. But since my diagnosis I’ve learnt to embrace living with this condition. It’s a part of me now and it’s not going away.

My life with MS

Living with MS isn’t easy, I won’t sugar-coat it. There are so many symptoms and it’s different for everyone. I have a lesion on my spine that effects my whole body. I have numbness, pins and needles, spasms and pain in my legs, arms, feet, back and part of my face.  At the end of every day I’m in so much pain, but I’ve learnt to deal with it. I choose not to take any neuro pain relief, I prefer to battle the pain mentally.

I work full-time, which I absolutely love and I wouldn’t change it. Many people ask why I work full time. “But you’re poorly, why are you working?” My answer is “no, I’m not poorly. I have a condition. But I won’t let that stop me from reaching my career goals”. And I'm lucky the organisation I work for is extremely supportive. My colleagues are my work family.

Every day is different, I wake up not knowing what to expect. In the past, I’ve woken up and my vision has been blurry and I can only see grey – that’s the optic neuritis. I’ve had days where I can’t put my arms up in the air so my husband has had to wash my hair, blow-dry it and dress me.

One day I woke up and couldn’t walk. But some days are totally fine. I carry on with my schedule, school run, work and so on. It’s the unknown that scares me at times. My personal fear is needing to use a wheelchair and not being able to walk.

Motivation to move

In 2021 I was diagnosed with stage 4 endometriosis – another condition with no cure, lucky me. This led to me having a total abdominal hysterectomy, which took quite a long time to recover and heal from. This led to surgical menopause at the age of 40, so I started on HRT.

I’d started to gain weight and I thought to myself “I need to lose weight”, so I started running last summer. Recently I’ve had new issues with my right leg. The feeling of having both my legs affected scared me. That’s also why I started running again. They say exercise is so good for MS.

It’d been a while since I’d exercised. But now I run three to four miles a day. Don’t get me wrong – it’s not easy. And sometimes, by the end of my run, my legs and bum are numb and tingling, and I'm limping. But I feel so much better for exercising. It sets me up for the day and I feel like I have more energy.

Now, I look forward to watching my son play in his football matches at weekends, seeing friends and family. Before, I spent the spare time I had resting in bed.

Find out more about staying active with MS

Keep going, keep talking

I'm all for raising awareness. I post on social media and used to write a blog, which I’m thinking of starting up again.

My son and I did a charity run and raised a great deal for MS charities. One thing I’ve deliberately done is to be open with my son about my condition. He’s seen me on my best and worst days. There’s no point hiding it and it’s made him an even more caring and loving person for it.

I feel I have no choice but to be positive as my condition is always going to be here. All I can do is try and be there for others going through similar things and continue to raise awareness. It’s ok to have a cry, which I do a lot. But then you wipe away the tears and carry on, ready for another day. I'm blessed to have a wonderful support system – family and friends who are always there for me. In that way, I'm lucky.

I may have MS, but MS doesn’t have me.