Kevin

Talking with my wife about what MS means for us

After his diagnosis, Kevin found it really important to talk to his wife Elaine about the future. Attending one of our Living Well with MS sessions helped start their conversation.

I was diagnosed with MS in 2017 after puzzling doctors for over a decade. I’ve been told it’s all in my mind and had more experiments and tests tried out on me than Frankenstein’s Monster. If it wasn’t for a problem with my eye I probably still wouldn’t know I had MS.

My optician, in her first day in the job, noticed I had a swelling behind my eye. She sent me to hospital for an emergency CT and MRI scan to rule out a tumour.

A short diagnosis and a long weekend

My official diagnosis conversation on a Friday afternoon went like this: “Good news is you don’t have a tumour but you have MS. That department will be in touch.”

I became Dr Google and read all the horror stories associated with MS over the weekend. It was a very long weekend indeed.

I managed to get an appointment with my neurologist the following week. They supplied me with a lot of very informative leaflets and advice.

Learning an MS diagnosis isn’t the end

While I was being Dr Google I also discovered the MS Society, and all the very helpful Living Well with MS sessions. Elaine thought it would be a good idea to attend one, to give us both a better understanding of MS.

I wanted to hear how being given a diagnosis isn’t the end, but I felt unsure about it. I wasn’t sure if it was going to be a pity party or doom and gloom.

But the sessions were great. They were very informative and everyone was very friendly. The volunteers running the session (with MS Society staff member Susi) had been diagnosed with MS many years ago, and had the answer to every question that was running through my head. And if they didn’t then Susi did, or could find out.

Starting the conversation about MS

Going to the sessions helped me and my wife talk about MS and what it meant for our future. We set up a plan for the future and I started to reduce my working hours so I wouldn’t be tired all the time. I want to spend time with my wife and baby daughter when I’m awake and have energy.

I would say the key to living well with MS is to learn your body and learn what MS is, and what’s just aches and pains – it’s not always MS. I want to continue living as normally as possible; if I overthink or worry too much then I won’t want to get out of bed.

When I start to feel sore and tired I think of a great line by the late great Richard Pryor, who also had MS – “keep a bit of sunshine on your face.”

See our Living With MS sessions