There is something about relapses that remains daunting, no matter how long ago your MS was diagnosed. After 15 years of life with multiple sclerosis and several serious exacerbations to match, I regard flare-ups as a necessary evil.
My flare ups warn me that, even though I might think I am stronger than I was yesterday, I still have MS.
Is it really my MS or is it something else?
The most significant lesson relapses taught me is, “Is this degeneration at work; or, is this ‘just’ an MS symptom; or, is what I’m feeling completely unrelated to MS?” During the first-year post-diagnosis, I reached out to my MS nurse on several occasions as I could not distinguish which was which. She responded with, “Willeke, over time you will (need to) learn the difference because not every symptom will be caused by MS. Sometimes a headache is just a headache.”
In MS, a ‘true relapse’ is when the symptoms start at least 30 days after your last flare-up and should stick around for at least 24 hours. Somehow her distinct use of language during that phone call set the tone for how I would perceive life with MS. As such, negotiating relapses is something that has grown from the inner communication between myself and my MS. Words from your inner self can help change how you feel – even if you aren’t the old self you use to be.
It’s not a case of positivity and words
It’s easy to say that you can fix anxiety by having a different mind-set when you go through changes in relapses. In critical flare-ups, it takes a lot more than just managing your vocabulary. In the past, I have written about my diagnosis with a hospital-acquired superbug. Once the diagnosis was in, I was wheeled into an isolation room, received pastoral care and I was not allowed any visitors.
The following two weeks, I went through acute anxiety, disbelief and even utter perplexity at how a neurological illness can impact you on so many levels. Even my late GP called me in disbelief and began wondering whether I was jinxed because I had gone through so much the past two years. It was also time to learn the concept of “It’s OK not to be OK.”
That super-relapse? It wasn’t fun, but it was necessary to go through it. The truth is, relapses come in all sorts and sizes, for many reasons, and will leave when they feel like it.
Relapses always add their own brand of dysfunctional behaviour. There are exchanges with loved ones who think they are better neurologists than those in your medical team. There is the nagging realisation that if you want to get through a relapse faster, you should quit fighting with yourself because you think you are a better neurologist than those who care for you.
These days, I am happy when a relapse is just a relapse and not something more. I want people to know: you cannot relive and undo what happened during the period in which the relapse was created. Instead, flare-ups are messages for the future, they tell you to accept that this is life with MS and to create constructive, lasting, positive changes for the future.
The healthier you live, the stronger you will be emotionally and mentally, so do not let MS win. Not today. Not tomorrow. Not ever.
Top tips for helping you manage your relapse journey