Let me share an incident that happened to me on a Luas recently. I was lucky enough to have nabbed the last available seat on a packed tram at rush hour in Dublin. I noticed an older lady standing beside me and I could nearly predict the scene that unfolded before my eyes. A Good Samaritan noticed that this older passenger needed a seat and looked straight in my direction. She asked me to give up my seat for somebody more deserving and I replied no. The Good Samaritan proceeded to shout all over the Luas about my lack of common decency and how people these days have no manners or respect. Outwardly I looked ok, this woman had no idea that I had been enduring MS fatigue since the moment I had woken up that day.
Fatigue that comes with MS exists in two forms, lassitude and nerve fibre fatigue. Lassitude is an overwhelming tiredness that comes on with no apparent reason. During my research for this article I read that someone accurately described lassitude as ‘swimming in a fur coat’. People with lassitude know that they want to get up and go but their mind and their body aren’t congruent. Unlike lassitude, nerve fibre fatigue has a definitive trigger. This type of symptom is typically brought on by exertion or heat exposure. A typical example of this type of fatigue would be walking difficulties that some people living with MS may experience on a hot day or the farther they walk.
Fatigue associated with MS isn’t like regular tiredness, even though I’ve had plenty of eye-rolling from people who remind me that ‘they’re tired too’. It’s not the same thing! Regular tiredness is cured by sleep but MS fatigue isn’t cured by any amount of sleep. It’s a bone-aching, muscle-tightening, finger-tingling tiredness that seeps into every pore and refuses to leave for days on end. It’s responsible for missed social events, cancelled plans and fuzzy memories. It causes me to zone out of conversations and withdraw from socialising because the only friend I can tolerate is my dog. He’s satisfied with a tummy rub and a treat when I don’t have the energy to string together a sentence.
MS fatigue makes my limbs feel like they’re made of lead as I wade through quicksand. The heaviness in my body makes everyday tasks much more difficult as it feels like I need endless energy to complete them. There’s a constant dragging or pulling sensation in my body as I attempt to get through my day. I feel like I’m temporarily on mute, there’s picture and no sound or a haziness over everything around me. Words are on the tip of my tongue, but it feels like the connection between my brain and mouth is covered in an impenetrable haze and by the time the word has come to me the conversation has moved onto the next topic. The unpredictable nature of MS fatigue makes it all the more difficult to live with. I’ve spent weekends at home resting, doing yoga and catching up on sleep, only to return to work on Monday morning flattened by tiredness. On the other hand, I can wake up fresh as a daisy after a rare Saturday night out. Although it can be frustrating, it makes a good argument for a night in Coppers as a cure for MS fatigue!
Think back to my incident on the Luas, knowing what you now know about MS fatigue. In that moment I was completely mortified. I wanted the ground to open up and swallow me. I don’t look outwardly unwell and all I wanted to do was explain why I couldn’t offer up my seat but in that moment I just said no. I quietly got off the Luas and I silently promised to give my body some much needed rest. That’s all we can do in these situations. Rest, recover and soldier on.