From the archives…MS Memories

My bitmoji is much cooler and more “able’ than the real me.
Before I started this blog, I used to get my MS-related ya-yas out on my personal Facebook page. I’m not sure why sharing feelings in a social media forum about being diagnosed with a disease like this helped me at all, but it did. I think it gave me a way to share some of what I was going through in a broader way so that maybe when I actually saw people in real live person, I wouldn’t have to explain what my life is like now. How dramatically things can change in just a few months. Or minutes, as the case may be. I hate answering the question we almost always get asked first in conversation…that would be, “How are you doing?”

Thanks to Facebook Memories, some old posts pop up every now and then that help me remember how far I’ve come. Some of them make me realize, at the very same time, how much things never change.  It’s a strange oxymoron.

This post marked my 6 month diagnosis anniversary. It felt timely so I’m sharing it here, again, pun fully intended:

It’s worth stating that I’ve just passed the 6 month mark post-MS diagnosis.

I’ve learned a ton in that time and experienced a whole new world of medical jargon, research, endless needles and insurance rules. I’ve learned about how MS works, what treatment options exist today, what potential treatment options are on the horizon and much about how other people deal with the daily task of living with multiple sclerosis. I’ve read so many things that have helped me so much! But none of those things really prepared me for the basic change in how I now perceive time.

Time is a funny thing.

When we’re young we seem to have more of it than we can fill with activity and discovery. As we get older, it gets more elusive. There’s more pressure to fill your given hours in pursuits worthy of what little hours you could have left as life starts to feel not that lengthy after all. But lately, thanks to this summertime heat and humidity and the basic reality of living with this disease, a day just simply isn’t long enough anymore.

In fact, based on the reality of my sheer need for sleep, I’d like an additional 8 to 10 hours in a day. If I had 32 or 34 hours to work with in a day, it would be far more likely that I could rest as much as my body seems to want between each minor daily task and still not feel like I am somehow failing at life.

I could sleep in later in the morning and not feel like I was somehow short changing my co-workers or shirking my “important” duties. I could go back to sleep on the days I really need to without that guilt and fear that I was letting someone or something down. I could wake up knowing that there was plenty of time to get things done at a manageable, leisurely pace!

I could take my time making my ever more complicated meals and then eating said meals and then digesting said meals (you’d be surprised – or maybe you wouldn’t – what subsisting on 9 cups of mostly vegetables each day does to your body. Not all of it is pleasant). I could take the time necessary for preparation and shopping trips, because of course an extra 8 hours in a day would mean it would be much easier to space out trips to the grocery store among the other errands and chores a regular life requires. Like showering. For example.

I could plan necessary chores for times of the day when I am most capable and likely to manage best. Like, say, I could do the laundry when I can’t sleep at night because I could use those extra 8 hours I’d have in a day to sleep when I need to sleep and not fall behind. I could go for a walk when it’s dark out and not as god-awful hot. I could go to the pool at night when the mere thought of walking to the actual water from the parking lot in the blaring sun doesn’t ruin the whole idea of going in the first place.

With an extra 8 hours in a day I could make time to do the things my heart yearns to do. Like write – not just in my journal or rambling long Facebook posts but really write. Like a book. Or something more lofty and worthwhile. I could read ALL OF THE BOOKS. Each night I have to force myself to close my book because I cannot bear the thought of what not getting at least 8 or 9 hours of sleep at night will mean for the day ahead. Without it, I am quite literally useless.

Just think of how many more books I could read, how many awesome shows I could watch, how many literary works of genius I could produce, how clean I would be, how my house would be spotless and organized, my cats claws all neatly trimmed, litter boxes cleaned, days full of healthy meals with ample digestion time and watered flowers I would have with just 8 more hours in a day! Think of the friends I could see and the life I could live if i didn’t have to sleep so much of it away!

But wait. I’m gonna go out on a limb here and say that most of you reading this probably feel you could use more time in the day, too. Moms and dads, young professionals, single people, artists, craftspeople, exercisers, social butterflies and work-a-holics, the peri-menopausal among us – you probably all want those extra 8 hours too. It’s kind of basic, really.

It’s not just me. It’s not just because I have a stupid disease. It’s just life. That’s the way life is. Maybe we all feel that way as we inch closer to middle age and a time in life when time itself finally stops feeling infinite.

Or maybe I’m just telling myself that so I can stop being afraid that I’m sleeping my life away. It’s really hard to tell.

2 thoughts on “From the archives…MS Memories”

  1. I think you have a great way with words, not everyone understands what you are going through, or anyone else with this diease

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