My Advice For Living Well With MS

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:

  • Powernaps are great for an extra burst of energy during the day
  • Keep cool as warmer temperatures might make you feel drowsy
  • Adapt your diet as best as you can – talk to a doctor or nutritionist to get help

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

  • Can I say something selfish? People with MS should prioritize themselves more. Delegate, delegate, delegate!
  • Read or listen to music with or without earplugs in, even when you’re alone and in a quiet space. It gives you total freedom to connect with yourself again.
  • Take time out to enjoy your meals instead of shoveling it inside your mouth. Bad digestion on top of MS is something that can be easily avoided.
  • If you feel anxious or stressed, mindfulness or another type of relaxation exercise might help you. It’s something you can do on your own, with family members or friends and it helps calm your mindset.
  • Learn a new language or any skill you’ve always wanted to tackle but you’ve never got around to doing it. This gives you a longer-term method of staying ‘with it’ and a drive to keep going.
  • Brain training is the magic word. I’ve recently become crazy about the New York Times’ crosswords published online. They publish a new one every day, and become more difficult during the week, starting with the easiest one on Mondays.
  • Otherwise, your laptop/PC almost definitely has its own fair share of games you can play to keep your mind active. Mahjong is my favorite and helps me with my hand movement coordination and with keeping me mentally awake.

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’.

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