Everyone thought I was tired, turns out I had a brain disease

Kezia Kecibas

Published March 23, 2025 3:00pm Updated March 24, 2025 11:09am

I was lying on my side in a hospital bed when a consultant stood over me and asked: ‘Have you heard of MS?’

I had indeed – my friend’s mum had it when we were in school.  Unfortunately, after her diagnosis, she’d become withdrawn and in a wheelchair within a year.

‘It’s not always fatal,’ the doctor added, ‘a nurse will come and explain more.’ With that, he turned and left. But the nurse didn’t actually come for three days.

Fortunately, the girl lying in the bed next to me had overheard. She turned to me and smiled: ‘It’s not that bad, you’ll deal with it.’

This was May 2007 and I was still in my early 20s. I just kept thinking to myself that I couldn’t have a brain disease. I was a mum – I didn’t have time.

The first few symptoms seemed to come out of the blue.

Earlier that month, as part of our healthy mums’ fitness group, I signed up for an assault course. I was doing a 10 km run in July so I thought this would be good practice – and great fun, too.

At one point, I crawled under a cargo net, then had to climb a wall. This is when things got weird.

As I reached the top, I held on to the zip wire and I just froze. I couldn’t do it.

I’d done this many times before so I didn’t know what the problem was. My best friend caught up and encouraged me, ‘go, go, what are you doing?’ Seeing that I had physically frozen to the spot, she added: ‘Hold on and I’ll push you down.’

I ended up finishing the race and didn’t think much of it. But over the next few days, I started getting blurred vision.

At the time, I was studying a holistic therapies course at my local college and it was a lot of coursework so everyone agreed that, as a mum, I was probably just tired. At the same time, I was tripping over absolutely nothing and getting cuts and bruises from falling all through the house.

Within a fortnight, I decided to make an appointment to see the doctor. After explaining that I kept losing my balance, he checked my ears and decided to prescribe ear drops because he thought it could be an ear infection that was causing balance issues.

As days passed, the falls became more frequent so I went back to the GP, but was told to give it time. I lay in bed, head pounding, and the room was spinning.

On top of that, I couldn’t think about food and I struggled staying upright. It felt like a hangover from hell. Even water made me throw up.

The spinning continued and got so bad that it made me nauseous. I ended up calling an emergency doctor, who prescribed anti-sickness tablets.

On one particularly bad day, I put my toddler son, Theo in his pushchair and wobbled down the street clinging on tightly, heading towards the doctor’s office. I staggered in.

‘I’m really not good,’ I told the GP, ‘I’m going to A&E.’ Once admitted, I slumped in the wheelchair, holding tightly onto the arms as if it would somehow stop the spinning.

Kezia Kecibas - I dismissed my MS thinking I was just an exhausted new mum Picture: supplied — It felt like I had MS under control (Picture: Kezia Kecibas)

I had an MRI that took about 15 minutes but felt like hours. Immediately afterwards, I spotted a toilet, flung the cubicle door open, and was sick.

Not long after this, the consultant suggested I might have multiple sclerosis (MS). I was shocked. I was a healthy person – how could this happen?

Eventually, the MS nurse arrived with leaflets about medication. I just remember being told that the condition gets worse, there’s no cure, and they don’t know why it happens.

In the meantime, I was put on a steroid drip, which started to work. The spinning stopped and everything felt like it was going to be fine; I could handle this.

Thankfully, things settled down for a few years once I started medication. I had been plodding along doing weekly injections, but overall leading a happy life. It felt like I had MS under control.

What is Multiple sclerosis (MS)?

Multiple sclerosis (MS) is a condition that affects the brain and spinal cord.

Some of the most common symptoms include fatigue, problems with your eyes or your vision, such as blurred vision or eye pain, numbness or a tingling feeling in different parts of the body, feeling off balance, dizzy or clumsy and muscle cramps, spasms and stiffness.

There is currently no cure for MS but there are treatments that can slow the progression of it and help ease symptoms.

They include steroid medicine to reduce swelling and help nerves work better, muscle relaxant medicine to help relieve muscle spasms, cramps or stiffness and medicine to treat pain, vision problems and other symptoms.

This continued – even when I had my daughter, Layla, in March 2012. After chatting with my neurologist, I came off my medications.

But after childbirth, I had a relapse with my MS symptoms – as can often be the case.

Once home from the hospital, my mum and stepdad came over to see the new baby. At the time, we were having work done on our house, so I tried to keep Theo entertained while making teas for the workmen, feeding guests and breastfeeding Layla.

I was exhausted. As a result, my eyesight started blurring and I kept dropping things.

I rang my neurology consultant and was told to stop breastfeeding. I was then initially put on oral steroids and began bottle feeding, but the medication didn’t seem to actually be doing anything. So after a few weeks, I underwent an infusion every 28 days.

This worked beautifully, so I stayed on this treatment plan for over five years. Unfortunately, then it started wearing off.

So I made YouTube videos of my daily struggles. I filmed myself in the aftermath of having a fall. I described how much of a struggle cooking and cleaning was and even did some on the way to physio and neurology appointments.

Essentially, I came out to the world as having MS.

In December 2018, my annual neurology check-up came around. I was tired, so I slumped into the chair in the specialist’s office as he told me the medication wasn’t working anymore. ’Sadly, there’s nothing else the NHS can do for you.’

Read Kezia's book

Kezia has written about her journey in her debut book Rose-Tinted: M.y S.tory, out now.

I was devastated and angry. Then a lifeline came along.

Haematopoietic Stem Cell Transplantation (HSCT) was something I’d heard of to treat MS, but I found out that AIMS – the Autoimmune and Multiple Sclerosis charity – was giving a presentation just down the road so I decided to go along.

Essentially – according to the MS Society – it ‘aims to ‘reset’ the immune system to stop it attacking the central nervous system’. I immediately knew I wanted to try it, but the cost was 45,000 Euros (around £38,000 at the time).

So I started a JustGiving page and began fundraising. Complete strangers saw my social media videos and donated – it was incredible. I managed to raise over £28,000 so I was able to book the treatment in Moscow for July 2019.

At the clinic, I went through several days of testing to make sure my body was strong enough to cope with chemotherapy. For the procedure, I had various tubes and lines inserted to harvest my stem cells and replaced with healthy ones.

I was petrified and excited all at the same time.

In the aftermath, my body felt so weak so I used a walker to move. As my immune system developed, I got stronger.

After four weeks in Moscow, I headed home to the UK. Throughout it all, people were more supportive than I imagined.

I’m now living my best life – with no injections or infusions. I sometimes get tired, but doesn’t everyone? I still work as a holistic therapist in my garden and love every minute. I have oxygen and physio every week and I try to eat good food.

But most importantly, I’m staying positive, being my own advocate, and laughing often.

At the end of the day, I want to tell people with MS that you should never be ashamed of disability.