Hardest Time Of The Day

Hardest Time Of The Day

 

 

 

clockWith multiple sclerosis, you and I both know what ails us can change from one day to the next.

We are doing fine on Tuesday…but on Wednesday, we become a mime who doesn’t simply “feel” the wall–we run face first, smack-dab into it!

 

 

 

Unfortunately, not only can our MS change daily—it also changes hourly.

For some, fatigue makes the late afternoon a struggle.  Others may have trouble settling their jumpy legs at bedtime.

That got me thinking of my most difficult time of the day.

 

For many years, MS caused havoc with my late afternoons.  About 5pm my energy would clock-out and fatigue would clock-in.  I would shift from a somewhat normal gait…to a stooped, shuffling Quasimoto lurch that frightened small children.

(Canes, AFO’s & drugs have now improved my gait to resemble a “sloppy-drunk runway model.”)

 

My Odd Sock sleepytime
My Odd Sock sleepytime

 

But for now (and for the past year or so), the hardest time/task of the day….is getting out of bed!

 

I wanna get up.  I’m raring to get up.  I’m a morning person.  But my body has another plan.

 

 

Wakey-wakey time is the only time of day when my body is on the same page. 

Unfortunately, that page….hell, chapter, is spasticity!  If I wasn’t breathing, a coroner would rule it “rigor mortis.” 

I am one big, giant muscle spasm from my pits to my toenails.

 

Sticking a leg out from the covers.
Sticking a leg out from the covers.

 

 

Getting out of bed is an exhaustive struggle of grabbing, clawing, balancing & pulling.

Jesus resurrected himself with greater ease.

 

 

 

 

Grab the strap!
Grab the strap!

 

Thankfully, by clutching the mattress strap, I can work my rear end to the edge.  The cord around the top edge giving me a morning wedgie.  I slide my legs off the bed, shifting my body’s balance point enough to raise my upper body.

Yes, it’s a whole routine.

One show daily.  Two shows, if I have to get up in the night to pee.

 

 

So that’s my hardest time of the day.  What’s yours?

Mornings?  Afternoons?  Evenings?  Bedtime?  Getting through the night?  Or, are you one of the unlucky ones who struggle all day long?

Hardest time of the day?…For My Odd Sock, it may be right now as I have been sitting here way too long!

sock

11 Replies to “Hardest Time Of The Day”

  1. I am weak and tired all through the day. However, sometimes I get this unexpected burst of energy, and quick try to do things that I previously could not. After around 3pm, I feel like someone pulled the plug, and am pretty much nonfunctional for the rest of the day. I asked the doctor about energy drinks. He claimed Starbucks coffee will do the same thing. Starbucks has never “pumped me up”. Tried Red Bull out of curiosity because my daughter and friends swear by it. Still no energy. Was once precribed Provigal. Didn’t work for me either.

  2. I do the morning gymnastics as well. I’ve learned, though, that I can somewhat control that stiffness by stretching in reverse. If I just stretch out, I’ll cramp for sure, but by bending my legs and stretching inward, I alleviate much of the spasticity. Of course, it leaves me tired after just waking up, and by the time I’ve showered and dressed, I’m ready for bed again!
    I still get tired later in the day, too. I’ve found that a brief (20 minutes) nap works wonders around 4:00. (That is, until my husband decides to become chatty, as he did today! My evil eye soon shuts him up, though.)

    Good luck with the morning routine — it really can be murder!
    Peace,
    Muff

  3. Mornings are my worst. Getting out of bed is not easy to do, or pretty to watch! It takes a couple of hours till I can move about, then I’m good until after dinner. I don’t have fatigue issues, so I get in at least 6 “good hours” a day!

  4. Morning is spazz time, I awaken to calf cramps. Once out of bed and on my feet, my left leg folds up to my crotch for the stork pose. I then do a Frankenchicken walk to the toilet. Definitely a bird theme going there.

    Yesterday I watched the 1939 classic “Son of Frankenstein.” When the monster took his first walk I blurted to my husband: “He’s doing the MS walk!” “I thought you were doing the Frankenstein walk,” he said.

    We’re confused.

  5. I too found that a 20 minute power nap (using a timer) works wonders. I took Provigle for a year or less but, it became costly when that short nap works well.
    Scott

  6. Scott,
    I was never one to take naps, but am becoming a fan as time goes on!
    Thanks for reading.

    Kim,
    The “stork” stance is a good one.
    I feel like an idiot when that happens. Although with my big nose, bet I look more like a stork than you!

  7. Fatigue sucks. I’ll be in the middle of something and my energy will just disappear. I then know I overdid it and have to stop. I miss being able to watch TV in a comfy chair and not find myself getting bombarded by peanuts (in the shell of course) by my family. I rest a bit here and there throughout the day trying to keep enough energy to make it.

  8. Afternoons, I get sooo tired I think there is no way I can pick up the kids from school and make dinner. I rest on the couch and then soldier on. I am on the couch right now 🙂 take care. Olivia

  9. Love that MyOddSock sleeps with a bunny-so cute! For me, the most exhausting part of the day is all of it! But if I had to narrow it down, I would say all morning, late afternoon and evening. I seem to be at my best around 11AM- luckily just in time for the View.

Making it official.