The Best Things I Have Done Since Learning I had MS

Well, the biggest mistakes I made were all pretty big and pretty dramatic. The best things I have done pale in comparison, mostly rather small and practical, but things that have helped all the same.

Best Thing #1: Writing my Blogs

Hands down, the best thing I’ve ever done for myself, period.

I have been writing since I was old enough to know what it meant, but I never made the time or had the courage to put it out there. Oh, in high school I would write suspense stories on the bus. They would get passed from person to person as I wrote the each page. That was fun. In college I did write for the literary magazine. But that was it for ‘publishing’.

Then came blogging.

I had been thinking about writing a blog for a while, but I was really nervous about it. What if people hated it? Hated me? Then I came across a really funny piece on Wiki How called “How to Dissuade Yourself from Becoming a Blogger.” With helpful comments such as “Consider that your voice, even if it is truly a good one, is a tiny peep against the massive wave of tripe out there.” and “Rest easy in the knowledge that it's perfectly okay and respectable to not have a blog at all. Not everyone is cut out to write things that are readable by everyone. The last thing you want to do is contribute more dreck to the universe.”, my insecurity went into overdrive.

Exploring the blogging world I did indeed find awful, awful junk. But just as often I found marvelously written, funny, interesting work. A LOT of self-help blogs. I was in the process of losing weight for my son’s wedding, so in 2008 I took the leap and started a blog with the idea it would be a support system for people losing weight.

Re-reading my earliest stuff, I cringe. I HATE the name, Nourish. The writing is turgid and self-conscious. I am someone who loves to laugh and kids around all the time. This was positively grim. It just wasn’t me. Then, about a month and a half in, I fell and broke my shoulder. Not a usual source of hilarious material. But I wrote about it as a catharsis and that is when I started to find my real, genuine, goofy, voice. And it took off.

I have the best time writing that blog! I have met wonderful people who have become true friends. I have received comments and feedback that is so touching, so kind, so encouraging it has been a real gift. I’ve made myself and others laugh. I eventually started two others, one talking about books and one strictly focused on MS. They are a little hard to keep on top of, but still incredibly rewarding.

Writing is something that everyone can do, even if it is not a passion for you. It is a really good way to organize your thoughts and identify feelings. It is a great outlet. And I believe everyone has a fascinating story. So I encourage everyone to write down what is going on in their head, even if it is for no one but themselves.

But my bigger point here is do what you love. You deserve it. It’s time. I love to sew also, but with working and taking care of a family and a big house, just never had a chance. Now I am like a fabric junkie and sew every day. It just makes me so happy. I learned how to knit too. I can never sit still. That wasn’t a problem when I hit the ground running every day, but all that has changed as I become more and more immobile. To use up my energy, I always have knitting with me.

So that is what we need to do when we have a chronic illness. What is it you love to do that has been on a back burner? What is the passion that you have been too busy for? This is the time to cultivate the things that are most meaningful to you. Hey, you deserve it, you have a shit disease!

Best Thing # 2: I acknowledge what my body is telling me.

Me? Listen to my body?!? hahahahahahahaha The only thing I ever listened to was the voice in my head that was running persistently in the future: “I have to do this and this and this and this and after that, this. And then that again.” pant pant pant “And then and then and then…” Never. Stopped. For. One. Minute.

For many of us with MS, we struggle with a fatigue that defies words. There is literally no way that I, even though words are my thing, can convey to someone who has not experienced it what this feels like. Tired, exhausted, spent, none of these even approach it. It is like trying to walk through a wall of mud, almost all the time. Or like all your limbs and your head are attached to weights pulling, pulling, pulling and you have to constantly struggle not to fall over from the pressure. That sort of gives an idea of what it is like.

And then, for me at least, there is the spasticity. The muscles in my legs tighten to the extent it is agony to stretch them out. Especially if I am in the same position for even as short a time as ten minutes. And should I mention the dizziness? A disorienting reverberation that echoes through my body with any movement.

Sounds like fun, huh?

In the beginning, I ignored these symptoms. I DEFIED them. Kept working, cleaning, shopping, doing, doing, doing. And paid the price with regular relapses, needing a course of IV steroids to get me functioning again each time. And having more and more residual deficits each time. It took forever, but I finally allowed myself if not to accept these things, at least to respect them.

So I do the ‘bank’ thing. I am a bank account with a certain level of funds available. Each action I take, getting dressed, taking a shower, fixing a breakfast or lunch, is a withdrawal. I know now I can only make a certain number of withdrawals in a day before I am over drawn. So I budget myself. I rest, I limit. It often feels as though I am indulging myself, but realistically that is not accurate. I am being practical when I rest for an afternoon, because being overdrawn means not being able to move at all. Don't get me wrong, it is hard.  I give up a lot.  It is a huge concession for me, but the payoff is staying functional and suffering less. Less suffering. Hmmmm. I think that is worth it.

Best Thing # 3: My Overbed Table

Go ahead, laugh. It is, after my laptop, my most treasured possession in the world.

Before I got my table, because I have to rest so much, I was juggling everything on my bed and nightstand. Juggling unsuccessfully, I might add. So a friend suggested getting “one of those tables like they have in the hospital.” Now I am a nurse. If you are a nurse who has ever worked in a hospital, you have seen unspeakably disgusting things on bedside tables. I can cope with these things professionally. But I certainly didn’t want that memory lingering over my own personal bed.

As I am wont to do, I resisted. And spilled things and lost things and sat on things because my bed was a disorganized mess. So, taking baby steps, I priced them. And was delighted to find they had a different name: laptop tables!! Well laptop tables never had emesis basins full of puke or bed pans full of poop on them!! What is more, they were reasonably priced. So I bought one. And I love, love, love it.

Ok, I'll admit, it is hideous.  But handsome is as handsome does. It has a tilt top side for my laptop, a solid side for books, cups, plates, etc. and wheels that allow it to be pushed out of the way. The wheels are probably the weakest link as they will not roll over anything thicker than a human hair, but that is just a quibble. I stitched up a big tote bag with half a dozen pockets that hangs over the side of the table to hold my knitting, my i-pod, my mobile phone, CD’s, pens, note pads and unopened, six month old mail. ha ha  Just kidding. It’s really seven months old.

Best Thing # 4: Reach-y Thingies

Even if I wasn’t crippled, I’d still be short. Hard to reach things when you are short. I am also clumsy, whether because of the numbness and weakness in my hands or because I am simply clumsy, I do not know. I just know I drop and/or knock over everything. And, because of being so spastic and weak, I have the darndest time picking up the things I have knocked over/dropped. So, brilliantly, I bought several reach-y thingies. I do believe that is the technical name for them.

I bought ones that fold in half for the kitchen and bedroom, with wide, rubberized tips so I can pick up a variety of things. For the den, where I sew, (this was extra brilliant) I bought one with a magnetized tip because I am sick of playing 500 pick-up with the cups of pins I am perpetually knocking over. Voila! Now all I have to do when I need a pin is stick my magnetized reacher on the floor and I come up with a dozen pins. I usually come up with a dozen other things as well, but we won’t talk about that.

Best Thing # 5: Admitting I have MS

Crazy, huh? That having MS would be on any sort of Best Things list? Having MS certainly isn’t the best of anything. I know there are worse diseases out there, and I am grateful not to have one of those. But this one is still pretty bad.

However, by admitting I have it I am free to take better care of myself. Denial is a great protective mechanism for a while. It is a good place to hide while the shock registers in your brain. But, when you’re in it, it is really hard to discern when denial goes from protective to destructive. For me it was destructive when I wasn’t taking care of myself because I refused to accept that I was sick. MS has no tolerance for not taking care of yourself. It is a punishing disease that punishes you even more if you defy it.

Also by admitting I have MS I let other people in.  I am not thrilled with other people knowing.  I hate being what I perceive of as 'weak'.  But the fact is people are good and have been especially good to me in light of my illness.

I still cannot accept it. Acceptance to me suggests consent or approval. Consent? Never. I will resent this disease and everything it has stolen from me until the day I die. So I can't accept it, but I can acknowledge it. I can acknowledge the toll it takes and find a way to balance it. That is how I can be good to me.


Those are my Five and Five, five good choices and five terrible choices. However, I believe no matter what choices we make, we need to cut ourselves a break. All we can ever do is the best we can do. Sometimes we choose something that seemed like a good idea at the time. The important thing is to be willing to reconsider when things are not working out so well.

Please let me hear from you about the choices you have made in managing this disease, or any other chronic illness. The more we share the more we can help each other out.



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