Edward Bowes  wears a yellow t-shirt and is standing in front of a hedge.

My life with MS

Edward Bowes on how his MS hasn't stopped him running a marathon, swimming the equivalent of the Channel and pushing for change to his treatment.

In 1996 I graduated with a degree in Aeronautical Engineering and in August 1998 I started my graduate job.

A few months later I woke up with a blurry patch in my right eye. I thought it would sort itself out, only it didn’t. The next day it was still the same.

I woke up on the Friday and was blind in my right eye. The GP sent me to hospital, where a doctor examined my eye quite thoroughly and asked a few questions about my health in general (until this happened I 'd had a few periods of intense dizziness, but no other symptoms).

She suggested that it may be multiple sclerosis but said I should see her superior for a second opinion. Unfortunately he wasn’t there until Monday and I was to see him then – no ifs or buts.

An MRI scan confirmed MS

On the Monday, the neurologist admitted me to the emergency ward and put me on a steroid drip to reduce the inflammation that was suspected on my nerves, the optic nerve in particular. I was taken to another hospital for an MRI scan. They're reasonably common these days, but scans were less common back then. The neurologist got the results quite quickly which confirmed their thoughts - it was relapsing remitting MS.

I have MS - what now?

I saw the MS nurses and we discussed treatments. The only possible treatment at the time was quite new and had to be injected. I declined. I was worried about painful injections and so was determined to get through this without them.
I went for two years without further problems. This made me wonder if I actually did have MS.

A series of relapses

Then the relapses started. My doctor put me on the steroids and everything recovered. Then just a few months later another relapse, steroids once again and it resolved. But then it happened again.

I had a good chat with one of the MS nurses and they gave me videos (yes, it was that long ago!) to watch on each of the treatments (injections). I decided that if things were starting to go downhill for me I would do them.

Making a decision about treatment

There were four drugs available, so four videos to watch. That was a fun night in! I didn’t want to do daily or muscle injections so was left with a choice of two.

I was started on half-strength interferon and after the first month I was moved up to full strength. I did get some flu-like side effects but I was able to manage them quite well.

In general the injections weren't as bad as I'd feared, but I didn't like doing injections to my (thinner) arms. My legs and stomach were generally OK as there is a 'bit more' padding there.

Getting into exercise – and running a marathon!

I made up my mind that MS wasn’t going to beat me and joined a gym. I did a couple of sponsored events which I am still proud of. I swam 100 lengths per day for February – the equivalent of crossing the Channel twice. 

And I joined a running club to help me train for the New York marathon!  The feeling at the end was great (I’d DONE it, all the training wasn’t a waste!!) and also a bit of cramp – but after running 26 miles you’re allowed a bit! I don’t think that I could do that now, as I haven’t the time or balance.  

More treatment options became available

I still dreamed of a non-injectable treatment and every year I’d ask my neurologist if there were any ’on the horizon’. He always said no.

But then, after 12 or 13 years, I found out about a couple of new treatments so I wrote to my new neurologist and he allowed me to move to one of them – a tablet. Only that autumn I had another relapse. I recovered and life continued as normal.

Then, about a year later I had another relapse. I was in hospital again. I got out, my almost regular yearly relapse out of the way. But around Christmas I was struck by a new one.

Trying a different treatment

I went into hospital on New Year’s Eve 2015. Again, the staff sorted me out. I saw my neurologist who told me the medication wasn’t working for me and he was taking me off the tablets. I was about to try and argue when he mentioned a new drug that was given through a drip (infusion) only.  

Did I want to go on it?

I had heard of it and the infusion meant that I only had to go to hospital one day every four weeks to get my medication, which felt like a bonus.

It also meant that I met other people at the hospital who were similarly affected. We can talk about any problems that we may have had, but usually it’s just a pleasant chat. I’m still on this therapy and so far, I’ve not had another relapse.

How MS affects me now

I go to a gym reasonably regularly but less than I used to. I suffer from a bit of fatigue when it’s warm and/or humid and mental fatigue – my memory isn’t as good as it was.  
My writing isn’t the best either – MS affects my right hand side and I’m right handed. I have sleep issues, waking fully about 4am still very tired, so I take medication which helps me sleep and that generally works very well for me.

I have slight bladder issues (wanting to go very often), making the almost hour and a half drive to my parents more of a race than it should be. The sight in my right eye has never returned fully, I would describe it as ‘cloudy’, like looking through a steamy window. Only the vision in my right eye has been affected. I wear glasses for driving now.

I am aware that I do have MS but I don’t let it rule my life – meaning that I try not to let it limit me.

I have learned (mainly by my failings in ‘normal’ ways) ways around the little problems that it can throw up. I used to do Body Pump and circuit training regularly (three times a week, each) but have had to let them go if my balance was playing up – it isn’t worth the risk for me and I now do a cycling class called spinning instead.