Stormy, Sleepy Sandy

An MS’er weathers the hurricane

This week’s post is in no way designed to make light of the recent hurricane that has brought havoc to parts of the East Coast. My prayers and well wishes go out to those who have lost loved ones, those whose homes are destroyed and/or those who are forced to live in horrific conditions while the clean up takes place. The post is only meant to do what I do- take a very serious issue, discuss it in a different way, and then make fun of something. What is being made fun of this week is me and, as always, multiple sclerosis.

I was ready for the approaching storm. When you have a whole week of newscasts giving you hourly updates, even the most fatigued MS’er has time to prepare. I had candles, flashlights, batteries, provisions, drinking water, and water to use for the basics as, if the power went out, so did my faucet water supply.

Where I live on the Massachusetts coast we weren’t expecting a direct hit. We were told however, that since the storm was so huge, we should plan on extensive and long term power outages. I had a good book, I could deal.

On Sunday, as the winds started up, I panicked at the notion that I may not have matches for the candles. What good are candles without something to light them with? I checked, found the matches and hunkered down.

The winds increased and the expectation was that the worst would be Monday. So, on Monday, I decided to get up early to take a shower first thing (might be days before I could take another one, better get super clean now) and have my precious morning cup of tea before the power went out.

I got up, did both and then immediately fell asleep for an hour and a half. I only woke up because the tea had gone right through me and my bladder was screaming for help. I still had power.

My to do list was outrageous and since there was power, I should get something done while I still could. But the exhaustion was out of control. I was afraid to turn on my computer for fear of losing everything I was working on when the outage came. In my brain fog I didn’t appreciate the fact that the laptop has a battery, and thus I would have plenty of time to save everything before losing anything.


I watched the winds increase. They were getting fierce. I shuffled around, read a bit and managed to find just enough energy to make my bed. This was important as everyone knows that when the end of days come, those with made beds will be spared.

I made lunch. Then fell asleep again. Then made another cup of tea and fell asleep, waking again to my bladder alarm clock.

As fatigue and cognitive difficulties are my worst MS symptoms, I was used to being tired and used to the recurring brain fog. But this was unlike anything I had ever experienced before.

Just before 8PM I felt confident that we might not lose power after all and settled down for Dancing with the Stars. As the opening music began, the lights went out. Considering the seriousness of the storm, missing my favorite show was not an issue. I took a flashlight and book to bed and promptly fell asleep.

By the next morning, the power was back on and I awoke thinking I should see how the rest of the world weathered Sandy. I drank my tea while I watched the news and saw that parts of the Coast were in a catastrophic condition. I shed a tear and prayed a prayer for the people suffering. Then I fell asleep again. And again, awoke to a screaming bladder and repeated the exhaustion and fog of the day before.

What is this? Is it a flare? Is it my own emotions wiping me out as I thought of other people and their struggles? Did preparing for the storm take a mental toll? Was it the aging thing again?

I was reminded of the theory I had developed back when my 89 year old grandmother had moved in with her 91 year old brother. I would often spend the weekend and once, after returning home very late from a date and having my uncle open the door for me (he was not waiting up specifically for me, he was just up,) I realized that it wasn’t that the elderly go to bed early, nap a lot, and then get up early. It is actually that they are on a two hour on, two hour off, sleep cycle; at least in my family.

Both my grandmother and my uncle would be awake for two hours, sleep for two hours, and then wake again and repeat 24/7. Is this what was happening to me??? Had MS finally turned me into my grandmother?

It didn’t help that during these days I was also super hungry all the time. And by that I mean really hungry; hungry, hungry hippo hungry. With my sweet tooth, my junk food tooth, my salty tooth and my everything processed tooth, I could usually find room to snack. But these few days I was hungry for anything. It would have been a great time to have veggies in the house but with the threat of power loss, I hadn’t bought any. (All you super healthy people who are thinking ‘you could have bought veggies that you eat raw’ you can just go chomp on a carrot!)

Wednesday came and I still felt the same way-on a permanent sleep cycle, starving no matter what kind of healthy or unhealthy thing I consumed cycle, super achy, super spacey, oblivious, etc. Even breathing seemed to be too tiring a chore.

I called Laurie who has had MS a lot longer than me and who has a friend who has had MS a lot longer than her, and she mentioned her friend had mentioned something about barometric pressure. Say what?

I hung up and took another nap. But with a slight bit of energy on Thursday, I looked it up.

Barometric pressure describes how heavy the air is. That normally wouldn’t mean anything but I looked it up some more and Googled MS and barometric pressure. Turns out, when the air is heavy, it is like it is working against you and weighing you down. Every normal effort you make, you make under this extra weight of heavy air. It is like carrying a baby elephant around your shoulders as you try to go about your day.

Phew… what a relief. With MS, the fatigue and brain fog will likely be constant companions. But good to know I can blame Sandy for this slow, sluggish, narcoleptic, useless, brain dead start to the week.

Lucky for me, that the pressure stayed lousy right through Halloween. No special costume required-my costume was that of an MS zombie. An MS zombie with a whole supply of candles, flashlights and batteries…..

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6 thoughts on “Stormy, Sleepy Sandy

  1. Glad Sandy is gone. And glad she stay too long in your neighborhood!
    It’s amazing that here in Ohio we have had over four inches of rain!
    Well, you made it. And you were well prepared.

    • Thank you My Odd Sock. My area was lucky and can just hope and pray that the clean up continues quickly for people still greatly struggling. Was your rain from Sandy? Man, she was a nasty wench that one!

  2. Ah….so the ‘ole barometric pressure is something else to look out for! Good to know for us new MS’ers. THANK YOU Yvonne. Appreciated the read.

    • Thank you Jaynie- so glad you started reading the blog. The barometric pressure was a new one for me too and to be honest, I got overwhelmed trying to figure out the difference between and high and the low pressure systems. Suffice it to say, the weather is relevant but completely confusing! Hope you are doing great and see fair weather skies in your world this weekend….

    • I know Vanessa- right! At least it is another thing we can blame our lousy moods on. Thank you for reading the blog. I hope you have an awesome weekend..

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