What is this ‘MS Fatigue’ people talk about and why does it get the blame for so much? This week I’m taking a closer look at its affects, what remedies are available and how I manage my daily visitor.
“A wake-up call doesn’t come harsher than this!” I thought as I scraped myself of a Brussels pavement. Actually, there wasn’t much in the way of ‘clear thought’ at all after I went crashing down narrowly avoiding chewing the pavement.
It was after a day of training in the EU Commission I was on my way back to the office. I walked at a gentle pace- a beautiful sunny day with the pink cherry blossoms already covering some of the nicer avenues….Bliss. Then, all of a sudden, I was sprawled across the cobbled street with knees torn up, bruised limbs and papers strewn along the path. My toe had caught on the lip of an overly ‘generous’ cobble-stone and instead of seeing it for what it was – a chronic case of bad pavement maintenance in European capital- I blamed myself.
Back up a few steps and answer me this… have you ever fallen? Does your balance get a bit iffy sometimes? Is fatigue part of being iffy? What else could it be?
Knowing what fatigue is, recognising it and doing something about it are very different things. Statistics show that 80% of people with MS deal with the effects of fatigue in their daily existence with 25% stating that their activities were always or very often limited by fatigue. Medics are not sure what its caused by- theories include it could be brain atrophy, scars in the Central Nervous System, changes in grey matter. For some people it almost never goes away and has a monumental effect; they need to rest for extra hours, if not days, to recover from the exertions of daily life. For others there are different treatments that provide some help in offsetting the effects. These include modafinil prescribed by healthcare professional or the more commonly available caffeine hit courtesy of such places as Insomnia and Starbucks. I admit, over the years my imbibing of coffee was reaching epic proportions as I attempted to perk up my fatigued cognitive system with strong Americanos or the rare delicious-soya-mochas-with-a-couple of-sugars-thrown-in for that extra zing! They were delicious but the chemical crash wasn’t worth it.
Emma’s Ease the Fatigue List
Activity– Do get out and about when you can, meet with a friend for a walk/run and a chat. Stretch your limbs, twist your wrists and move what you can
Rest– Don’t be a King Canute and try stopping the tide of fatigue. Go easy, rest and if you’ve noticed changes, talk with your MS Nurse/neurologist.
Meditation– Mindfulness of the breath exercises ease your brain activity and are surprisingly liberating and effective. Check out Jon Kabat Zinn or a local Mindfulness course.
Be Kind– Firstly to yourself. MS isn’t your fault, nor are the symptoms. Once you’re operating on Full, you can then give to others.
Feeling overwhelmed, depressed and stressed adds to the symptom and really need to be carefully watched. Get help from a professional to check what’s going on and contact the local MS Regional worker to find out if there’s anything available in your area.
Now, after years battling with the tiredness I have negotiated a deal with my fatigue. During the week, I rest in the afternoon for 30 minutes with my favourite music/meditation track. It isn’t easy during a work day but without it, my cognitive function gets extremely slow and my day gets very difficult. Somedays if I’m exercising plenty and in good form, I don’t need to rest at all. There are also days when, from the moment I rise in the morning, I am exhausted. These are the very difficult, sad and lonely days when I do all I can to remember its not my fault.
As the days pass and injuries heal we must remember that not everything ‘bad’ that happens is because of MS or a symptom of MS or- Stop the Lights- might have absolutely no direct link to MS! However, when it comes to the scars on my knees and hands, they are from an accident caused by a series of unfortunate events. So are the brain and spinal cord scars that show up on the MRI.
Fatigue may be a symptom of MS that can totally mess up our lives and leave us flailing. But like dodgy paving and the scars that come from a fall, it’s about who to reach for when we do fall that counts. Today, reach out to yourself and do something now that eases some of the scars left by MS. Whether they’re physical, emotional or otherwise, they need to be recognised for the healing to start.