"A wake-up call doesn't come harsher than this!" I thought as I scraped myself off a Brussels pavement. Actually, there wasn't much in the way of 'clear thought' at all after I went crashing down. Following a day of training in the EU Commission I was on my way back to the office. I walked at a gentle pace- it was a bright sunny day with cherry blossoms festooning some of the nicer avenues with a flash of luscious pink. Blissful. Then, all of a sudden, I was sprawled across the cobbled street with knees torn up, bruised limbs and my papers strewn along the path. My toe had caught on the lip of an overly 'generous' cobblestone 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 about 80% of people with MS deal with the effects of fatigue in their daily existence; 25% state that their activities were always or very often limited by fatigue. Medics are not sure what causes fatigue - 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 a drug called modafinil, prescribed by healthcare professional or the more commonly available caffeine hit courtesy of such places as Insomnia and Starbucks. I admit, 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. I am now strictly a ‘cup of tea for me’ woman.
Emma’s Ease the Fatigue List
- Activity- Get out and about when you can. 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. Illness or fever can really be an issue so make sure you get checked out if you notice any change.
- Meditation- Mindfulness of the breath exercises ease your brain activity and are surprisingly liberating and effective. Books and online resources from Jon Kabat Zinn, Thich Nhat Hanh or a local Mindfulness course might even change your life.
- Be Kind- Firstly to yourself. MS isn’t your fault, nor are the symptoms. Once you’re operating on full reserves, then you can then give to others.
Feelings of overwhelm, melancholy and stress (just can get your thinking calm?) add to the symptom and really need to be carefully watched. Please get help from a professional and contact the local MS Regional worker and 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. I rest in the afternoon for 30 minutes with my favourite music/meditation track. It has been a difficult thing to learn but without it, my cognitive function gets extremely slow and my day almost turns on me as I battle indecision and exhaustion. There are other 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 ‘this too shall pass’.
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 after the fall that counts. Today, reach out to yourself and do something now that eases some of the scars left by your experiences of MS. Whether they’re physical, emotional or otherwise, they need to be recognised for the healing to begin.
For updates and to take part in Emma’s ongoing adventures, please visit republicofemma.wordpress.com and join in the conversation on Twitter
Emma will launch the Young People's Project - 'Believe and Achieve' at the European Multiple Sclerosis Platform (EMSP) Conference in Dublin on the 8th and 9th May 2014.
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