Diary of a relapse by Carla King

For many people with MS, relapses are a big part of their condition. However, it’s not always easy to identify whether you’re having a relapse or instead, a flare up of existing symptoms. 

Regular contributor, Carla King shares an insight into how she felt when she learnt that rather than a flare up caused by warmer weather, she had actually had three consecutive relapses following 13 years of being relapse-free.

In June, I started experiencing numbness around my right knee. As I’d been building up slowly on my cross trainer, I thought I’d done something silly to it. All I needed was time away from the equipment for a week or so and my knee would be back, I thought. 

About three weeks later, the toes in both feet became tingly or numb. That’s because it’s summer and it’s hot, as someone who’s MS loves a bit of Uhthoff’s reasonably thinks.

July came to an end and the weather cooled. My fingertips on both hands, now tingling and extra clumsy, added to the growing number of symptoms that I just couldn’t deny. Having discussed this with my MS nurse, I was seen by a neurologist at a ‘hot’ clinic, who suspected that this was indeed a relapse, and referred me for an urgent MRI scan. 

All things being COVID, ‘urgent’ meant a month later. I still couldn’t feel my knee, toes and fingertips were still tingly, and the fatigue was growing, but it was sensory and I was managing pretty well, all things considered. It’s amazing how quickly we adapt to these situations.

Many in the MS community (including those in our MS teams) believe that stress is a trigger. I’ve talked about stress before but not the kind brought about by being late for school, or forgetting to submit an expense on time. I’m talking about sustained, relentless stress that sometimes keeps you up at night (painsomnia, anyone?). 

I’d just returned to work after a long sabbatical, and the return hadn’t been as smooth as it could have been. Add to this that I’d been chasing a set of (non-MS) test results for seven months and that, until relatively recently, we’d come out of months of home-schooling: well, you see where I’m coming from, it was one, big clusterchuff!

So, as luck would have it, about two days before the scan in August, I began to feel worse. The MS began to favour the left side of my face. A cold burning sensation would go from being very uncomfortable to painful for a few seconds at a time, mainly around my mouth, nose and eye. Every time this would happen, I would feel a strong weakness in my torso and legs, meaning I needed urgently to sit down or to lean on something. This would happen roughly twenty times a day, and I’d never see it coming. Ordinarily, I’d think “stroke!”, but as context really is key in MS, I put this into perspective. That doesn’t mean it was less frightening or worrying, however. The relapse had been sensory until that point, but now had a motor element to it. The relapse was getting worse.

Within a couple of weeks, the results were back and whilst I knew there was going to be activity, it was still very hard to hear about new lesions, sizes, locations. Still harder to hear was the news that I didn’t have one, worsening relapse: I’d had three consecutive relapses.

We don’t talk very much about emotion in the MS community. We buck each other up, give our backs a slap, and we soldier on. There is a hard reality, however, that we tend not to deal with. I get the ‘I have MS, but it doesn’t have me’ mantra. I may even get the ‘I’m not going to change my dreams’ adage, from time to time. But the reality is that this isn’t always true, and I’m never going to pretend that it is. To feel doesn’t mean you are negative or that you are dwelling. Your mindset is still that of a person dealing with a chronic condition that no one wanted, and winning any way you can.

This relapse was my time machine. It took me back 16 years to diagnosis, with some subtle differences: the shock of hearing about something I suspected, but being fully aware of the potential consequences. The initial feeling of helplessness, but investigating the steps I needed to take toward recovery. The sadness that comes after 13 years of being relapse-free, but knowing that I would accept this all sooner than the initial diagnosis. In this case, reality hit me hard, and I had to deal with it urgently. 

For so many years in my work, as both a Career Coach and as a mentor and advocate, I used the five stages of grief model, a good tool to use if you’re a visual person like me. As someone with MS, I see the model having two functions. Firstly, it normalises how I feel, which is important because in tricky MS situations like these it’s easy to feel like an oddity and to feel completely alone, particularly when no one around you really understands. Secondly, it also helps to pinpoint how I feel at the time, and narrow in on solutions that help me accept my situation.

The stages of the model are not discussed enough. Grief is not a linear process, going from Point A to Point B, and the model reflects this, even though all stages aim toward the end goal: acceptance. You can get stuck at certain points (sometimes for years), you can revisit them, and you can jump back and forth. As you’ll see from my diary above, I suspect there are more than five stages. 

I don’t believe that sharing these emotions makes me depressed or depressing. I don’t believe that I dwell on the worst or that I should buck up. In fact, I am a very positive person. But, yes, I am human and suffer the occasional sense of defeat, and that’s okay. There are no rules when it comes to grief. I’m allowed to reset and to bounce back in my own time. Out of this very particular grief, the MS has made me angry, and it’s that anger that has propelled me to make some very good decisions for my health. It has even pushed me towards accepting that the relapses happened, and to work harder at putting the MS in its place. 

Carla King was diagnosed with MS in 2008, having had her first relapse in 2005. Follow Carla on Twitter @CarlaKCoach or via her blog My MS Bully and Me.