This is what living with MS and dealing with a relapse can feel like. You can’t really tell by looking at me that I live with MS, but there are hints. Not necessarily visible, but when you listen it becomes more obvious. When I make a case for adjustments, being perceived as able-bodied means people often don’t believe things straight away. For example, how inaccessible, unaccommodating or energy impacting environments and events can be. The burden of “proof” can be a lot higher.
The other thing I noticed more recently, is that I fall into that “invisibility” trap too. I’ve been managing my MS so well that it can feel like, that I don’t have MS. No major fatigue, no sensory issues or numbness and tingling. My most common symptoms. Or if they did show up it was in small doses and easily managed. But MS does know how to remind you…and this time round mine is screaming. Or in other words: I’ve been dealing with a major relapse since May 2023.

It started with a light tingle and numbness in my feet, unlike before it didn’t settle but rather spread up the legs to my lower back and belly. The only real treatment option is steroids, but I was told that would only be an option, if I couldn’t walk anymore. So, I need to manage this by myself. Having to stop running was difficult, as I was training for a half marathon. But the risk of getting injured and the associated pain with the overstimulation was too high. The sensation is so difficult to describe but I will try. It’s kind of like a dead leg, that doesn’t wake up and stays in that tingle phase. But due to the nerve and brain damage, I can’t process this properly. This then leads to overstimulation. At the start, that overstimulation lead to quite a bit of pain. Making it difficult to be on my feet, wearing shoes and having to pick soft socks and trousers. The pain settled over time and now it’s mostly numbness and tingles. The most annoying symptom was numb butt cheeks, for days it felt like I had toilet paper stuck between them, but it was just the sensation of them touching. It took me a while to stop panicking and realising what it was. Luckily, that sensation has eased now as well.

To manage the relapse and linked symptoms, I stopped doing a lot of things, mostly due to the pain. After a month or so of being pretty dormant, I decided to adjust my exercises to reduce overstimulation. When it comes to your feet and legs this is pretty tricky. Luckily, things also calmed down over that time. It’s still fluctuating and I have better and worse days, but overall the pain stopped and I can now do most things I want, except running. That’s still off the exercise list, but I started walking again more regularly for exercise, and I plan to start with Couch to 5k (C25K) soon.

MS is such a complicated mess of an illness, because predicting it is so difficult. On average a person with MS has a relapse every 2 years, but you just don’t know which part of the average you are. In 2017 and 2021, I took part in the Future MS study, to help figure out if there is anything that can help predict individual MS progression. My last big relapse was in 2016, the year I was diagnosed. The one before that in 2014, but it was missed diagnosed. So, I went from 2 years to 7 years. Likely due to treatment, and then a reduction in external stressors due to working from home. Until I get my brain scanned again, likely in November 2023, I won’t know what part of my brain was damaged and how bad the damage is. Another annoying thing about MS, there is no real indication of the damage unless it’s made visible by an MRI. So, most people with MS have annual scans to keep an eye on their brain and any damage that might go unnoticed. This is one of the recommendations from the Brain Health report.

I hope this relapse and the accompanying symptoms disappear fully soon, and I can get back to training for half marathons. In the meantime, I’m going to try other forms of staying active, which is why I’m heading to do some mountain biking with my partner in July 2023.

If you or someone you know lives with MS the below websites and organisations have been very helpful: