It was the summer of 2012. I had secured a good spot to watch the London Olympic opening ceremony on one of the many big screens showing the occasion. It was getting good. Her Majesty had just turned around to greet James Bond and was making her way to jump out of a helicopter. The crowds were cheering their surprise and approval. But then, something life-changing happened. I lost feeling down one side of my body.

Terrified that I’d had a mini-stroke, I phoned an ambulance to take me to hospital. What happened next was months of tests and waiting and watching before the final diagnosis of Multiple Sclerosis.

In truth, I’d had symptoms for years. Since childhood even. Looking back now, the number of falls, broken bones and clumsy incidents might have been early clues to the disease. I used to give names to my pain like “iced knee” to try to describe the excruciating joint pain I used to suffer. Later I went through an odd phase at university. For a short time, I developed vertigo, numbness in my limbs and my leg giving way in the shower. Then it went away again.

After the 2012 incident, doctors described my condition as “Clinically Isolated Syndrome”. It is a term used during the pre-diagnosis period where they watch to see if the symptoms return. They had mentioned MS as a possibility but I didn’t want to believe it.

Instead, I embarked on a quest to prove it wasn’t MS and something easily treatable instead. I had noticed, for instance, that my B12 levels had constantly flagged up as low. After some research, I realised that prolonged low B12 levels could cause permanent nerve damage. Maybe it was that? I nagged the doctors to treat the low B12 with injections hoping that would solve the problem. It did resolve the vitamin levels but not the MS. Eventually, I had to accept reality. I was 24 years old with a chronic disease for which no one knew a cause or cure.

“I embarked on a quest to prove it wasn’t MS and something easily treatable instead.”

At first I tried to live as normal, vowing not to be defeated. No, not normal. I pushed myself too hard to prove that my disease would not affect me. Wouldn’t make me less employable or less capable than anybody else. I worked more hours. I was always on the go, living on adrenaline. On Saturdays, I would slump, incapable of moving my body from the sheer exhaustion of getting through the work week.

My mental health was suffering. My sleep was non-existent. I was living in a cycle of hard-work and self-pity. Meanwhile, my health continued to decline. I had several disease modifying treatments that weren’t helping, my entire physical appearance had changed after being placed on prednisone. My confidence? Gone!

Relapses were the scariest part. Some days I woke up unable to feel my body up to my waist. I had blurred vision and pain in one eye. My joint pain was so bad I couldn’t lift a cup of tea to my lips. I experienced panic attacks when the infamous “MS hug” struck. It is a feeling that can only be described as being squashed between the plates of a mechanical crusher. I couldn’t leave my bed, yet alone the house. High-dose steroids were given to speed up recovery. The first dose would make me feel ultra productive, the rest would stop me sleeping for days on end. By the end of the course, my cheeks would be flushed bright red. My speech slurred. My written communication was often nonsense. I was a professional woman reduced to a babbling mess.

Six years after diagnosis I had a new disease modifying therapy which thankfully stabilised the disease. I’ve had no new lesions on the brain or spine for six years now. The damage already inflicted by the disease prior to that treatment still plague me. Issues including fatigue, nerve and joint pain, l’hermittes, numbness in my arms and legs (and big toe randomly…), optic neuritis, vertigo, bladder weakness and cognitive issues – particularly executive order function- affect me daily.

“I needed to give my body the grace and support it needed to live as well as possible.”

At that time I also had the realisation that it was time to change my approach. I had been trying to live as someone without a disability. Now it was time to live as a woman with multiple sclerosis. I needed to give my body the grace and support it needed to live as well as possible.

After months of therapy and research, I was able to find strategies I still use to this day. These help me live the healthiest version of myself that I can. I am dedicating a blog post to each of those areas in the coming days. I hope it will help others in my position. It’s lonely having the hidden disease. But in a way it’s the canary in the coal mine and a wake-up call to treat ourselves better. We must be more compassionate with ourselves. We should opt out of the rat race. We need to truly give ourselves the best chance we can to live well with MS.