So, what’s next? Life after my MS diagnosis

Thu 24 November 2022

Adeyinka Kilani

I still remember that season of my life like it was yesterday. That wonderful year 2008 when everything collapsed around me.

Changes in my body

I had my son the year before, and I was looking forward to what the future had in store for us.

My MS symptoms started with pins and needles in my hands, then progressed to numbness in my legs. I thought it was a side effect from the caesarean section. I called my GP and he said "let's watch". This turned out to be my first lesson – always listen to my body and keep talking until someone listens.

My symptoms continued

Fast forward a few more weeks and the numbness had spread to my lower body. Walking became so painful, one arm also went numb and my vision was affected.

By now I was so frightened. I had a baby to take care of and yet everything was going wrong in my body. I managed to get myself to A&E and was immediately admitted to hospital. Family members looked after my baby.

Yinka, you have MS

One MRI scan and lumbar puncture later, the diagnosis came – Yinka, you have multiple sclerosis.

I was confused, I’d never heard of it. My whole world collapsed like a pack of cards.

Work and life as I knew it screeched to a halt and another chapter opened in my life.

I started reading everything I could find on the condition. It was at this point I learnt my second lesson: Google is not my friend when it comes to MS. The information-overload scares me rather than helps.

Things started getting better

I went through a very long period of recovery. Gradually my mobility improved and the vision got better.

I started physiotherapy and completely changed my lifestyle, going on a gluten and dairy-free diet. I began a regime of supplements that I won’t bore you with. And I did hyperbaric oxygen therapy for a while.

I was told I have relapsing remitting MS. I have a relapse, get better, have another relapse, then get better. It’s an endless cycle because I never get back to my 100%. So the aim now is to have fewer relapses with plenty of gaps in between to give my body a good chance to recover.

In 2018, I started a disease modifying therapy (DMT) and it's made a massive difference.It’s still a daily battle but I have hope now. I have accepted the diagnosis and now I concentrate on helping my body manage the condition.

Getting the help I need

I’ve got used to a new normal. I miss my old self, I miss all the activities I enjoyed in the past.

But I also need to start discovering and loving the new me.

Self love is now my number one focus. Extreme fatigue and cognitive issues are my new companions.

I have a good support network of fellow MSers because they’re the only ones who get it. I’ve learnt to extend grace to my loved ones. I find it hopeless trying to get them to understand. Some do support but I don’t hold any grudge with those that don’t understand.

Now I know it’s okay to ask for help. I’ve stopped feeling bad about that. I take all the help I can get. And I listen to my body. I don’t owe anyone an apology if I shut down when I need to.

It’s good to talk

I’ve learnt it’s very important to talk about my condition. It’s difficult, because I don’t want pity, but talking helps. People around me can't help and make adjustments if they don't know.

I know there’s not a cure yet. I am hopeful. I believe medical intervention is God's intervention and we only need to wait a little more. A cure is round the corner.