Living With MS – Colene’s Story

Read Colene’s inspiring story about why her MS (multiple sclerosis) diagnosis hasn’t stopped her living a full and happy life…

“Something was wrong with my eyes…”

I’ve always had a pretty shoddy immune system – if there were ever any bugs going about, I’d catch them worse than most. In the summer before uni I had glandular fever and was really poorly with it.  Then in 2019, when my daughter was five months old, we were driving in the car when I told my husband something was wrong with my eyes – when I looked at the car in front of us, I could see two number plates, floating one above the other. We went straight to A&E and initially they thought it was something called Miller Fisher syndrome, which should go on its own, but asked me to come back for some further tests, including an MRI.

I wasn’t too worried as the double vision cleared in a few days. But a few months later I got the results of my MRI and was told I had lesion on my brain. At that point, it’s classed as a CIS (clinically isolated syndrome), but I was told that it can be an early sign of multiple sclerosis. Earlier this year, three years on from that CIS, I had a follow up MRI where they found one new lesion. That meant I have multiple lesions, and so was diagnosed with multiple sclerosis. The new lesion hadn’t caused any new symptoms, and wasn’t active, which led my consultant to diagnose me with Relapsing Remitting MS. This means you might have incidents where new lesions cause new symptoms (relapses), and periods in between where these symptoms either improve or stabilise (remittance).”

Colene was given a patch for her glasses to help with her double vision.

“It felt like someone had snatched this amazing new future from beneath my feet…”

I took the original CIS incident far harder than when I was officially diagnosed. The doctor who saw me was quite flippant, saying “It could be nothing, or it could be an autoimmune disease like MS.” I suffered with general anxiety, so my mind snowballed to the worst case scenario. I was a new mum and it felt like someone had snatched this amazing new future from beneath my feet. I was terrified I’d become a burden to my family and friends, and that I wouldn’t be able to look after my daughter.

I remember thinking “I’m not going to be able to take her to Disneyland” or that I’d be in a wheelchair within six months. My world fell apart, and I entered a really awful period of depression and anxiety. It makes me so angry now as I can’t get that time back. I was on maternity leave and should have been on an absolute high. In so many respects I was – I loved being a mum, but I was so sad at the prospect of my future being totally different from the one I’d imagined. By the time I got my initial diagnosis this year however, I’d had time to come to terms with  it, build mental resilience, and so it was much easier to deal with. Initially I was terrified to read anything about MS – as is often the case when you “Google doctor”, I was confronted with extreme stories. Over time, I’ve realised that MS is not a life sentence – people live full, long lives, and no two cases are the same. That’s why it’s often called the “snowflake disease”.”

“I now have an excellent neurologist who has been so supportive, understanding and positive.”

“Remembering that first appointment where I was told I may have MS still makes me feel upset – I was in shock. I remember walking out pushing my daughter’s buggy and my mum saying; “are you ok? Do you understand what they just said?”. Thankfully, I now have an excellent neurologist who has been so supportive, understanding and positive.

MS is really tricky – there aren’t many “instant” treatment options, and you won’t be considered for most until you’re having regular relapses. I’ve only recently been assigned an MS nurse who I can contact if I’m having any concerns, but most of the time it’s a case of resting when you don’t feel great.

“My life will be absolutely fine – it doesn’t end with an MS diagnosis.”

My parents dropped everything when I was first told it could be MS. My mum was amazing, and spent days with me when I was really struggling to accept my diagnosis. Physically I was absolutely fine, with no MS symptoms, but the mental side of things was so difficult. Mum did what mums do best – she looked after me, making sure I was eating, getting dressed, and getting outside. My only focus was making sure my daughter was ok.  

My husband is excellent – he’s a Kiwi and as laid-back as they come, so is excellent at keeping me calm and rational. We’ve always split all housework and childcare 50:50, but he’s really quick to step in when he can see I’m tired. My best friend saved me when I was first diagnosed. She has a family member with MS, and she was the person to provide me with perspective that my life will be absolutely fine – it doesn’t end with an MS diagnosis. She would come round and just sit with me for days on end when I was at my lowest, and I’ll never be able to repay her for that kindness.  I vividly remember finally building myself up to getting me and my daughter out of the house during that really dark time, and driving to her house, walking into her living room, handing her my daughter and falling asleep on her sofa. I hadn’t slept in days. 

Colene with her husband and daughter.

“Stress can be a big trigger for MS as it causes inflammation.”

I’m very fortunate in that MS really doesn’t affect my every-day life. I sometimes get tired faster than other people, so I’m careful not to overload myself. I’m a typical example of someone with high functioning anxiety, so tend to burn myself out and that’s not great for someone with MS, so I’ve got to try to manage my workload and stress levels. Stress can be a big trigger for MS as it causes inflammation.  

I’ve got my dream job working in communications and my company have been so supportive since my diagnosis, but I haven’t had to made any real changes to my work. I work four days a week so tend to keep my day off for resting and playing with my daughter to keep the balance right. If I’m tired, I’ll choose to spend the day playing with my her  instead of tackling the housework because she’s my priority. To be honest, I’m probably no more tired than anyone else with a toddler!

“It’s been a blessing because it’s given me perspective – you never know what’s round the corner so live life to the fullest.”

For me, the most challenging aspect of having MS is the mental side of it. As someone who struggles with anxiety, I like to have a back-up plan. I hate uncertainty. Unfortunately, living with MS is living with uncertainty – you can never predict when you might have a relapse, and you can’t really do anything to prevent it. It’s not your fault that you have MS, you didn’t do anything to cause it. Learning to deal with that uncertainty has been tough, however, it’s been a blessing because it’s given me perspective – you never know what’s round the corner so live life to the fullest! That perspective has massively helped my mental health. As my granda says, take life as it comes and keep smiling.

“I know that getting outside in the fresh air, getting some Vitamin D and moving will always make me feel better…”

My coping tips would be to go outside. Even if you’re tired, or feeling weak, you will never regret it. I would hibernate if I had my own way, but I know that getting outside in the fresh air, getting some Vitamin D and moving will always make me feel better, physically and mentally.

Rest is also super important for people with chronic illnesses, so making time to just rest is a priority. I’m not on active treatment at the moment, but I know there are options ranging from disease modifying drugs, to oxygen therapy, all the way to stem cell treatment should my MS progress. I’m a big believer in doing anything that makes you feel better whether that’s acupuncture, or just having a dance in your kitchen with the radio blasting!

“Don’t put any limits on yourself because of your diagnosis.”

My advice to others who have recently been diagnosed with MS is to be selective in what you read. It can be overwhelming when you’re bombarded with examples of what might seem like the worst-case scenario. I’m three years on and living my life completely normally – if I could have read that when I was newly diagnosed with a tiny baby in my arms, it would have given me so much comfort.

Also don’t be scared to talk about it – you’d be surprised at how many people have MS, and you’d never know. Not everyone who has MS requires mobility aids like a walking stick or a wheelchair, but those who do still have a great quality of life because of those aids. Most of us go to work, have fun with friends, and live a pretty normal life. I always think that I must pass a couple other people with MS whenever I go to do my shopping each week, but I’d never know. 

Don’t put any limits on yourself because of your diagnosis. Apply for the job you want. Book the holiday. Sign up for a new hobby. Any of us could be hit by a bus tomorrow, so we just have to make the most of life. My MS just made me realise that a lot sooner.”

Hidden Strength is so grateful to Colene for sharing her story and we wish her and her beautiful family a future filled with happiness and good health. ❤️

MS Awareness Week is April 25-May 1 and aims to shine a light on what is often an invisible and misunderstood illness. Click here to read more about MS and to get additional support. 


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Trigger Warning

The My Story articles in this section might contain material of a sensitive nature that could be triggering for some individuals, and whilst its not possible to anticipate every trigger, the my story articles sometimes contain information that can lead to difficult feelings and memories for some.

Please take care when reading and seek support from your family, friends or GP if needed.