No matter how tough our daily lives with MS have become, we’ve learnt to fight (out of necessity). Sometimes marching on seems so simple but at other times so hard - we’re not made of stone. When facial pain and fatigue make me want to go to bed at the unholy hour of 6 PM, I often refer to it as “going to another early numb and dumb event”.
My top advice for living well with MS
After 14 years, I’ve mentally become the bigger person in my relationship with MS. If it wants to beat me into a pulp, I can do the same back. This may sound like bluster but it does illustrate what my internal dialogue sounds like on most days: slapstick Laurel and Hardy to the core.
On a more serious note, my top advice is easy to remember: RRS-PPP-LLL.
Rest. Relax. Sleep. Plan. Prioritize. Play. Laugh. Love. Live.
These words represent something fluid - I can skip certain parts when my energy levels run out. Living by these rules gives me total control. Even more so when I keep track of when I do these activities in my journal or app afterwards because it provides that extra bit of ‘oomph’ I need to follow them.
RRS – Rest, Relax, Sleep
Not every yawn is caused by ‘just tiredness’. Fatigue can be a direct symptom of MS or caused by medical treatment. No matter where it stems from, fatigue needs to be felt to be understood. Taking time out to snooze is not such a bad idea. There are ways to help you along of course:
Since I am single, I have greater ‘control’ of how I deal with the practical, physical RRS side of life when symptoms become more pronounced. If you’re in a relationship and/or have children, it may not be as easy but there are always ways to incorporate a little more recovery time into your day.
PPP – Plan, Prioritize, Play
LLL - Laugh, Love, Live
What many people with MS are not aware of is that fatigue and depression sometimes go hand in hand, making it difficult to find out where it began. Depression and low moods might be a direct symptom of MS or caused by side effects of MS treatments. It could be caused by a mental health issue triggered by outside events like bereavement, burn-out etc.
The good news is that recent research shows some non-medical treatment for both fatigue and depression yield positive results. Cognitive Behavioural Therapy (CBT) is one way that helps you change thought processes that lead to negative thinking and feeling.
When people ask me how I can “be this happy despite…” I tell them that being happy doesn’t mean that I am cured or that I am not in any pain. Chances are I am still in an awful way but being happy is working with the qualities I still have and turning these into a positive mindset. It didn’t happen overnight but I gave myself time to find new positives around me.
Happiness isn’t even a “despite having MS” feeling anymore. It is simply a happy feeling.
No matter in which order you RRS-PPP-LLL, it always ends simply in ‘Live’.