While I was sleeping…

NapThursday, February 4th, 2016

I just broke the self-proclaimed and utterly shameful record of nap-time during the day.

Six hours and thirty minutes, give or take.

During that time, the Irish election race transformed into kindergarten battleground antics and in the U.S. Donald Trump was still vying for that eternally white house somewhere iwan Washington D.C. Elections generally are a mad dash trying to get into the minds of people willing to vote. I wonder if his toupéé agrees with him.

Saturday, February 6th, 2016

Eventually, those 6h30 turned into quite some time between the sheets, and to this day, is still ongoing. Add some fierce facial and eye pain to the mix, and you forget everything and everybody.

This morning ended with half an eye on Shetland on the BBC, and ended in dreaming of Ireland in my bed in Ireland, having fallen asleep within the starting ten minutes of the program. Clocking time, two hours and some fifteen minutes.

This afternoon, as desperately as I wanted to see the start of the Six Nations Championships in rugby, I was asleep – yet again.

So, if you spot a pattern in my sleeping diary, you are most definitely right.

Television cannot keep me awake. Ask anyone for all the funny poses she has seen me falling asleep in.

Emails are not answered or written. Period.

Facebook pictures shared because of those who posted them before me. Sorry Mark Zuckerberg, the twelfth Facebook anniversary happened without me being aware of anything.

Medication not taken on time. Ouch… neuropathic pain in places I never knew nerves ran in the first place.

Calendar filled to the brim with meeting reminders. My mobile phone notifications range from “Ping!” to “Beep!” to “Woohoo text message!”

As funny as I can make it sound after eleven years of living with MS, as hard it is for others to understand what multiple sclerosis fatigue is like, and what it’s not. It can in no way be compared to normal tiredness one feels after a day’s work. Because it cannot be measured, employers, colleagues, friends, and family can misinterpret fatigue and think that you are simply not trying hard enough, or that you are depressed.

Yet, I was (and am) not depressed. “Simply not trying hard enough” was and still is a trait I despise vehemently, as, in my belief, people owe it to themselves and their families to better themselves. Because I had abdominal surgery twice in one year, the last one three months before MS symptoms started to appear, I was on fire and lived a life free of medical hassle. My attitude was ‘roll with the punches and keep that positive attitude going’!

When I say I will write a bit, it doesn’t mean that I am symptom-free or wide awake. It means that I want to fill my time with something meaningful instead of waiting for symptoms to pass.

If asked if I want to be the ‘me’ again from before my diagnosis, I would reply this, “Of course I want to be that person again, only, I simply cannot remember what ‘normal’ feels like, what it was like to be plain, old me.” Fatigue significantly interfered with daily life very early on in my road to diagnosis and was one of the reasons why, eventually, I was forced to retire four and a half years later.

The walk from the couch to the fridge can feel like an uphill 100-kilometre walk, the walk from my bed to my bathroom a similar gargantuan task. Talking on a mobile phone produces facial and eye pains as if an ice pick or lightning is pierced through it every so many minutes. Sitting next to a cold window on the train kicks off facial pain. This is what I now know, what the last eleven years of life have been like.

Clearly, these symptoms add to raised levels of fatigue. Waking up several times a night because of pain causes sleep deprivation to already existing fatigue, meaning that in general, exhaustion runs like an iron thread through my days.

People with MS also have a unique form of added fatigue called lassitude, a kind of tiredness people without MS don’t have. Research is still ongoing and what is known already is that this type of tiredness is not related to depression or physical impairment.

Furthermore, typical “MS fatigue” translates as this:

  • More severe than normal fatigue
  • Comes on easily and suddenly
  • Tends to worsen by heat and humidity
  • Interferes with daily responsibilities
  • Occurs on a daily basis
  • Worsens as the day progresses

“Radical rest” is what I need to do, so, before committing to an event. What some might expect, this isn’t done feeling depressed or angry with myself because I cannot do things like others do. Adding complete rest happens because it has to happen.

Having MS is not my body barking orders at me. It simply is what it is. Life, and meaningful.

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2016. Unauthorized use and duplication of this material without express and written permission from this blog’s author and owner are 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.

3 thoughts on “While I was sleeping…

  1. Thank you for your post. Your life with MS is similar to my life with Syringomyelia. My normal ended over 50 years ago. That sounds crazy but that’s when I had my first spinal cord injury, followed by the onset of Syringomyelia. It progressed for 15 years before I was even diagnosed.

    Your pain with MS and your tiredness are all things you can’t really describe to people that haven’t lived with it. The pain that we have is not describable, even to a Doctor. They read about neurogenic pain, but don’t understand us telling about it.

    Tiredness has been plaguing me really bad. I can lay in bed for eight hours at night still not feel rested in the morning. Dozing off anytime is very easy to do. The body is trying to escape from the pain by having our eyes slam shut. Sleep for me is becoming a very weird assortment of dreams, a lot of the dreams are about pain and discomfort.

    Thank you again for sharing your life with MS. The best way for the world to begin to learn about what some of us live with in our lives can only be explained by us telling our story on our blog sites.
    Thank you again

  2. Thank you so much for sharing this. Those of us with this stupid disease deal with things in a way others really cannot comprehend. The more that I can read about others experiences the less I feel alone.

  3. I don’t think I could have better described this level of fatigue myself. Thank you for sharing your personal experiences and helping the rest of us MSers feel “normal”. haha. I love your outlook…. Keep being the best person you can be, better yourself, love others. MS doesn’t mean giving up life. It just means gaining new perspective. Very awesome.

    Lisa Helms

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