Multiple sclerosis, Struggles

Not waving but drowning

I’m getting terrifyingly good at masking my struggles with multiple sclerosis. So adept I even hide them from myself. Never underestimate the potency of denial.

My carefully constructed facade isn’t impenetrable. There are several chinks in my armor, but usually only those closest to me see them, as night sets in and I can barely muster the energy to move from one lazy perch, the couch, to another (the bed). Or when I’m long past the brink of exhaustion after only working a half a day. When I can’t even form a complete thought. Or when I keep shortening the walk I take Ella on, shrinking it block by block by block.

The title of this blog entry isn’t mine — it comes from a poem that so perfectly sums up how I feel at my weakest.

I was much further out than you thought
And not waving but drowning.

Stevie Smith

How easy it is for everyone, especially me, to sweep this MS under the rug, to ignore this 800-pound gorilla in the room. I’m not that bad off right now. Things could be worse. I know this.

I’ve learned no one likes a moper, and so I always try to put my best foot forward (figuratively and now, literally, as I try to hide my ever-intensifying limp).

So I would say a good 70 percent of the problem is me. I hate showing weakness, and am stubbornly self-sufficient. I don’t explicitly say “HELP ME!” even if I desperately need it. I don’t know how to ask, or what to even ask for, honestly.

Hey, give me your nervous system. I could really use it right now. And throw in a leg while you’re at it. Mine feel like icebergs today.

Got any left over energy? Toss a girl a bone here.

If I seem more negative than usual it’s because I’m having a tough week, one in which I’ve gone home from work in tears more than I haven’t.

There’s just been so much to do, and so little of me to be able to do it  — professional progress usually comes with a personal cost, something I’m more acutely aware of now.

So if you see me from a distance, that’s not me waving. I’m probably drowning, even if I refuse to admit it.

5 thoughts on “Not waving but drowning”

  1. I’ll help you with whatever you need! Yell anytime!!! I know what it’s like to need help but not want to ask. I did way too much of that during my giant twin preggo times.

  2. ah the drowning….

    yes, i can so completely empathize with you here. i still don’t have it all down pat… i find that i try to hide my symptoms… mostly my cognitive and fatigue issues…. but the more i struggle to do that the worse those two seem to get….

    i have always been very independent and it has been hard for me to learn that i have to ask for help, i have to say no to things from time to time… i simply can’t keep going at the pace i was before MS…. sucks…. thoughts are with you! take care of you and don’t let yourself drown!!

  3. The hardest words for me to say are “I can’t”. Four years in and I still think I should be able to do all the usual things I used to be able to do. More than once I’ve gotten in trouble with my husband, sisters, dad, or friends for trying to push myself too far or plain do things I cannot do anymore. I’ll spend twenty minutes on the simplest thing rather than ask for help. I know it’s just me being stubborn but sometimes I feel like stubbornness is the only thing in my entire body that still works right.
    I completely understand the bad weeks at work. Being to tired, your limbs not cooperating, everything that was once routine and easy suddenly becoming monumentally difficult. I had a week when I COULD NOT WALK about a year ago. I though my clinic manager was going to fire me. I cried every night. The good news was, I kept my job. Bad news is that everyone here is just a tiny bit afraid of me and my scary disease now.
    I wish that something I could say to you would make you feel better. Becoming suddenly disabled is a steep learning curve any time but with a neurological disorder it’s a game of mind tricks and loss of control. It takes time to adjust to the new world. I promise, though, it gets easier.

  4. I wonder why MS seems to strike those who are bright, strong, and independent. Or are they the only ones who write about it? Yes, I know exactly where you are — in my former life of employment, I did the same things over and over. Little by little I’ve learned to ask (well, sometimes…) and not be so independent (yeah, right!) I know it takes time until we can reach that stage.


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