“Look for the door you can open”
Steve was diagnosed with MS in 1994. He stopped running in 2007, but recently decided to try it again. In this post, he talks about his great experience with the Couch to 5k programme.
Well, here I am on the final week of the NHS Couch to 5k programme, after 10 weeks. (I was delayed 1 week due to being pulled over by my dog and damaging my ribs!).
This was a self-imposed challenge that I didn't think I would be making nearly 28 years after being diagnosed with MS.
Running and relapse
In 2007, 13 years after being diagnosed, I had another relapse. There were a few factors I thought might’ve contributed. I’d lost my dear Mum. I’d just started a new job in a riskier environment, moving from global corporate with protection and security to a start-up. I’d also started running.
I woke up one morning with a feeling in my right eye and soon lost vision in that eye. What followed was a worrying period where I was scared for my future. We had a 2-year-old, and I was the only breadwinner. I was suddenly facing a fire of uncertainty and worry.
I can’t say whether it was the grief of losing mum, the job stress or the physical effect of running that shifted my condition to react.
In time my vision returned, and life moved on. However, I formed the self-belief that I should avoid aerobic exercise going forward.
MS and work
Move on to 2022, 15 years later, and I’d had one more relapse in 2019. Again, with a loss of vision. In general, I was feeling good about my physical health. But the cognitive stuff had taken a dive. After a career in IT management, I was forced to realise that working in that environment wasn’t possible.
MS can affect everyone in different ways. Sometimes it can be physical (e.g. fatigue, optic neuritis), sometimes cognitive (e.g. short term memory, lateral thinking, higher processing, brain fog, cognitive issues caused by depression). Sometimes both, or neither. It's a complicated disease. MS at work was largely a hidden disability for me, as the issues weren’t obvious to those around me. I kept them hidden for the most part.
Picking back up the running shoes
My MS meant that I wasn’t at my physical best and certainly my balance had issues. But I could move and walk well and during lockdown I was training with a combination of online sessions at my local MS Centre in Wendover and a class-based Pilates.
My health felt good, so I decided to challenge that self-belief that sat there still and try the Couch to 5k.
Baby steps and filled with fear, the last 10 weeks have been following the programme, pushing my limits and self-monitoring. Being aware of how my legs felt - is that twitch a normal sign? Are my eyes feeling affected? (For me, optic neuritis causes visual overload and affects my peripheral vision). I have felt close to saying “no, I’m risking a relapse here and that’s not something I wanted.” You can never be sure that the effect of a relapse will reverse itself. So that balancing act has continued, and it is one that many people feel every day.
Still, I made it to the last week.
Doors opening
My MS journey - and this is something I see for many - has often been a narrative about doors closing. Having to leave my job because I wasn't able to cope. Stopping aerobic exercise because it wasn't "good for my MS".
The constant challenge can be about adaptation and saying goodbye to things. But I want to celebrate a door opening:
After nearly 28 years of MS I have managed to run 5k today, non-stop. Beating the negative self-belief I had established.
It's a big achievement, but we all have those moments when we can grow rather than retract. Be it testing ourselves to write that story. Getting back on a bike that we had mothballed. Having that conversation about our worries regarding our sex life to a loved one. Walking 5 paces. Applying for that job. Going to a place you had told yourself was too much bother. Taking on the challenge of a chair exercise programme.
Celebrate your individual greatness. Look for the door you can open. You're amazing for doing all you do with MS!
