Sleeping In is a Luxury of Retirement

I was thinking today while riding up the highway with Rick that I would still be working had MS not taken me out of my classroom early. This coming June would have been my planned retirement date. And I realized then how much I appreciate being retired now … sleeping in when fatigue wins the day’s battle is something that I would not have allowed myself were I still teaching. Recently, fatigue has won quite a few battles.

I can’t really say why. I can lean on the crutch of the diagnosis of MS, as fatigue is its most common symptom. It’s a hard one to defend, or explain. Everyone gets tired. Everyone over-reaches and exceeds their stamina boundaries now and then, and welcomes an opportunity to catch a few extra zzz’s. Fatigue, connected to MS and other chronic illnesses, really is different, though. Just before finally hitting the pillow, one feels as though the roads are paved with molasses, every walkway goes uphill, shoes are cement-filled and heavy, and eyes are closing often enough to cause partial vision. At least, that’s how fatigue hits me. I imagine everyone with a chronic condition’s fatigue is different. They say we are like snowflakes, or fingerprints. Unique.  And so easily misunderstood, or misjudged, or missing in action.

Friends of mine at school, friends who had young children at home, would tell others that ‘sleep is highly overrated.’  They would speak of being up with their little ones through the night, or early in the morning before dawn. I was fortunate in that when I had young children, they slept well, and ate well, and were generally easy to get along with. But I did understand the sleepless nights, for I spent much of a full year staying awake at my parents’ home every other night, caring for my mum and dad in their twilight years. Unlike people who work nights, I worked full time days in a classsroom of 27 seven- year-old.  students.

A week might look like this, in that year: Monday morning, off to work. Home at 5 pm to change my shoes, say hello and goodbye to my husband and son, and then off to my parents, where I would help them with supper and then watch the news with them, and then tuck them into bed in the evening. I would open my school bag to correct papers, or write progress reports, or average grades. During these hours, my mum would rise every thirty to forty minutes and then need a little help getting back into bed. She had both Alzheimer’s and Parkinson’s Diseases, and the one would propel her to get up, and the other prevent her from getting back into the bed. This would go on until just before dawn, when she might be able to sleep for longer than an hour. I would sip tea, or juice, or sometimes just water. I would sometimes lie down on the cot in her kitchen to rest my back, but not to sleep, for she would need my help momentarily. When dawn came, I would greet the day and my dad, then head home to change my clothes and say hello and goodbye again to my husband and son, and return to my classroom for another full day of second grade. That late afternoon, I would head home again at about 5 pm, say hello and yawn and apologize to my husband and son, eat a quick supper,take a shower and crawl into bed, secure in the knowledge that my sister would be taking that night’s shift and I could sleep until rising the next morning for another day of second grade. For every 48 hours, I slept about ten. I slept the sleep of the dead, exhausted and spent by that second evening. But I would get up on the third morning a bit more refreshed, and begin the next forty eight hour stretch.

Even then, I didn’t sleep during the day. I was at the top of my game in elementary teaching, but that year did take its toll. I was sometimes less patient with administrators who wanted more and more in after-school meetings … time that I needed to prepare the materials for the next day’s classes. And at the end of that year, I left elementary school and transferred to the middle school, where I would need to prepare only one subject area, rather than six each day. It was a transfer of survival for me, and it turned out to be the happiest of landings.

Fatigue, though, in chronic illness, isn’t caused by a lack of sleep, or by a difficult schedule, or by an unreasonable work load. Fatigue in MS just exists. It is, as someone said on Facebook, like the spider on the wall who just is there, as though he is supposed to be there. Fatigue is a real part of my life – but it is not a constant, and it does waft through in waves that are  not always predictable.

I plan as carefully as I can to limit evening hour activities, as that is the time when eyesight blurs, and fingers tremble, and memory lapses more frequently and deeply. I can handle about an hour and a half of an evening activity, and after that length of time, I’m there but most often not there … I’m tuned out, and grasping to stay focused on where I am and what the conversation is about. Rick can tell when I’ve maxed out, as he sees my eyes glazing over, or the tremors increasing. He’s very protective of me at those times, and more or less takes the lead to bring me home for rest. I am so blessed to have him in my life, and I thank God every day for our marriage and love.

I have been more16775085-beautiful-happy-young-woman-resting-in-bed tired this past week than in previous weeks, and while part of me tries to see that as a normal variation in the waves of fatigue, another part of me begins to wonder if this is a symptom of changes to come.  Only time can answer that one. I can see the dark circles around my eyes, and feel the ache of fatigue in my back. I know it is time to plan less activity and get more rest. Naps are a blessing to someone with a chronic illness. I don’t think I could do today what I did fourteen years ago with my mother and father. I know I would try. But I don’t believe I would be able to succeed. That was seven years before the diagnosis of MS. I was fourteen years younger then, not yet 50 years old. At 63 now, I can look back and say prayers of gratitude that I had what it took then to do what needed to be done. I am grateful that I have what I need now to do what I can. And naps are sometimes all that I can do, and it has to be enough.

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4 Comments

  1. Oh Terry as I read your blog for today my eyes closed about four times and NOT because of your blog writing BUT completely because of my MS. I completely understand what you are saying today is a very BAD day for my MS fatigue. I could be in bed all day today but I fight it and fight it, I believe I mostly fight it because I have always associated the during the day naps or those that would awake far after the normal a.m. hours to get ready for work as lay and at 42 it is very hard to change my mentality so in essence I am my worst judge. Years ago when I worked the night shift at Baptist and went back to school because I believe I wanted to be a Nurse I nearly put myself in the hospital; no strike that I did end up in the hospital due to extreme fatigue and dehydration because although I worked the night shift and went back to school full time I would only sleep from about 6:30 to 8:30,,,yes the math is correct two hours a day. As it turns out I had health issues and quit my job and finished my Sciences associated with the Nursing prerequisites and then decided I wanted nothing to do with Health issues and turned to another carer move. Bottom line is fatigue along with Cognitive issues are my hardest dilemmas and I believe the second is directly related to the fatigue.

    As for planning I try not to because that was one of my BIGGEST issues with my MS diagnoses because I usualy would over extend myself in the planning and if I would fall short from my goal planning again I was my worst critique. I take that back my immediate and extended family were my worse critique I just didn’t know how to stand up for myself. I believe my family will never truly understand nor want to understand how my MS fatigue differs from their fatigue. Sometimes it is easier to fall asleep in my computer chair than having the strength to get ready for bed. Again my friend ,,,,GREAT POST!!!

    • Thanks, Liset. It is a conundrum ~ wanting to be normal in activity levels and being compromised by fatigue and cog fog. Having compassion for yourself will help you next to have compassion for those who cannot understand your path. But we do understand for each other, and that is a blessing in itself. I have met the most understanding friends on the MS pages of the internet. Be well as you can, Liset. And thanks for sharing this post.

  2. Generally I don’t learn post on blogs, but I wish to say that this write-up very pressured me to try and do it! Your writing taste has been amazed me. Thank you, quite great article.

    • Thank you for stopping by and reading and commenting here. I invite you to visit often, as I write on different health issues as they affect me in present time, and often include reflections of the past, and sometimes dare to hypothesize about what the future might bring. I do appreciate readers who take the time to leave a comment!

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