Wednesday, October 03, 2012

Multiple Sclerosis is exhausting

Unquestionably MS caregiving is both physically and emotionally demanding and exhausting … but “living with MS” itself now that is the ‘mother of all’ exhausting, like having a tank looming over you just waiting to run you over.
A fellow MS caregiver blogger whose spouse has also progressed to the care facility era of Multiple Sclerosis recently shared a touching entry, Too Tired for Lunch.
“We were supposed to be going out for lunch today … But when I arrived he was still in bed and sound asleep … he woke up but still groggy, and said he didn’t want to go anywhere…”
Reading Barb’s entry I was reminded of how many times I arrive to find Patti in one variation or another of “I just want to sleep”.

When this happens in late afternoon (our usual outing time) I just hang out while she sleeps, use the opportunity to track down physical therapists etc, or catch a little tube with Patti, and help out by feeding her dinner in bed, etc.

None of which I confess tends to make it into many entries to this journal. I am guilty of wanting to share our successful adventures more than when MS wins. In reality a whole lot of both 'living with MS' and MS caregiving is about being “too tired”.

Even when out and about, every outing has its breaking point when that tank of MS fatigue rolls right over Patti.

Monday I had Patti home for another caring and the culinary arts experiment using haddock tenders and shoestring french fries for finger food friendly fish and chips. While the culinary experiment went quite well I was also in these cooler Fall temps trying to stretch the outing as a kind of training exercise for upcoming October Halloween parades.

Trying to guesstimate when that MS fatigue breaking point will happen and getting Patti ready for bed just before it hits is the never ending ‘art of MS caregiving’.

Patrick Leer
Caregivingly Yours, MS Caregiver @


  1. Patrick, you certainly hit on one of the most aggravating MS symptoms. As one who lives it daily, I'm never sure when it will hit or how severe it will be. My husband (my caregiver, but not to the extent of your position) very often sees it before I do. If I push against the fatigue, I could suffer more; if I give in, I may end up sleeping too much. It's such a bother!
    Thanks for sharing the downs as well as the ups in your role as caregiver.

    1. Interesting about your husband, Muff. I too will notice a subtle shift in focus of Patti's eyes or change in her voice that more often than not precedes that tank of fatigue rolling over her. Usually I simply try to monitor time. How long of an outing? How long since last nap, etc? ... and guesstimate.

  2. I am guilty of wanting to share our successful adventures more than when MS wins. < I get it, & I do some of the same, both with Dad in the past & myself in the present.

    1. Thanks Mary, I suspect most people do 'get it' but I do wish I could find a better way to share the 'boring and mediocre'. :)

  3. Patrick,
    So beautifully put. Thank you. We are not quite there yet, my husband is still mobile and able to take care of himself. He is still pushing against the MS and often feels "run over by a truck".
    It is a delicate dance we do in our home, me asking him to rest more, him reminding me over and over: "when I rest it all rushes in and overwhelms me". He avoids the sleep fog at all costs, and I do see the cost!
    Thanks as always for your caring attention and love you share here. We who live this life realize you are sharing mostly the "wins", it's what we want to focus on most, isn't it?

    1. Thanks for commenting. Others have mentioned resisting rest but in our story Patti has always been drawn toward naps almost at time living like a cat with cat naps to combat MS fatigue. It never ceases to amaze me how each person is different. ... and yes, you are right we do want to keep our eyes on the wins.


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