Sunday 9.13am. While others are slowly waking up, I can barely keep my eyes open. In fact, I am sliding deeper and deeper under my duvet, with my laptop now at an awkward angle to type. Being wide awake since 1.30am – thank you so very, very much MS – has depleted my energy tank.
“So what?” I hear people say. “It’s Sunday after all.”
Yes, I do know how to read calendars and clocks. I even know how to reset the microwave clock when Ireland changes to a new daylight saving time. Please don’t compare healthy tiredness to medical fatigue, it’s like comparing microwaves to planet Mars.
MS fatigue has been described as:
- “Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel.”
- “Profound”; it “disrupts life” and it is “different from any other experiences.”
- “The fatigue feels as if I had walked a mile without food and almost no water. I am not able to stand for long periods of time. Playing with my children is hard. I have no stamina.”
- “As a physical sensation it reminds me of falling into quicksand/a swamp – it’s a viscous, heavy, pulling feeling, but if I try to fight it, it hurts like hell and robs me of breath. As a sound, it’s like a muted background noise of violins, scratching away, that seem to be ever increasing in speed and out of sync – while the outside world seems dampened and fading.”
- “Fatigue feels like being weighed down, as if you are trying to walk up to your neck in a deep, muddy river in heavy, wet clothes carrying shopping bags full of rocks.”
Even typing this article, makes me feel utterly annihilated. Other fine, near-blasphemy words are creeping into my otherwise clean vocabulary in my mind.
It’s funny really, the more fatigued I get, the quicker the handbrake on my politically correct vocabulary is released. Curse words creeping in in my mind are a clear indication that my bed needs to be occupied, not in an hour or two, but right now.
As I lay down, my legs are burning, and I almost literally feel tiredness drip from them onto my mattress. It’s as if my mattress cannot sustain the level of fatigue it has to carry.
My beloved English language now sounds like Chinese, and I have trouble making sense of it. By now, speaking has become a thing of the past, and I yearn for extreme peace and quiet, as any noise physically hurts my body.
No, I am not exaggerating.
This is MS fatigue.
It doesn’t discriminate.
It is what it is.
It’s not a death sentence. It may feel like it, but it isn’t. I could use fancy words, but my brain won’t reach this deep to find them. Layman’s words it is so. It is now 10.48am. An hour and a half for 500 words and a few images. Not bad. Not bad at all.
After living with multiple sclerosis for ten years now, I simply know there’s no other way than having to get up and try.
More on fatigue:
- Fatigue in MS linked to regional brain damage on MS News Today
- Clinical MS manifestations on MedMerits
- Fatigue on MS-UK
- 10 tips managing MS fatigue on MS.net
- 7 ways to fight MS fatigue on EveryDayHealth
- MS and fatigue on MS New Zealand
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2014. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.