Thursday, November 13, 2008

Carnival of MS Bloggers #23 - MS Change Edition

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
The MS Changes Edition

I've started to notice that a lot of my friends are starting to disappear. It's like this widespread epidemic!
From a medical point of view, I knew that my life was going to change when I was diagnosed with MS seven months ago. Hell, it had already started changing before I was diagnosed. I was worried about things like losing the ability to walk and see. I was worried about how I would go on to be a stay at home mom if I could barely take care of myself. I still worry about that now.

My MIL told me that she has a friend with MS and he says that it stands for "Many Surprises" and I think that's pretty fitting. Atleast in my case, I never know how I'm going to wake up one day to the next.

What I didn't expect to change was how people who knew me before MS would start to look at me differently. They talked to me in a different way. I had some who would try to help out by asking me everything about MS and then I had some who figured that they would just ignore it all together.

The thing was..I used to be a pretty fun person to be around. I loved to laugh and most of the words that came out of my mouth had a sarcastic tone to them. But suddenly, to my friends, I'm this broken, fragile little person who can't be toyed with.

I've had some that have stopped calling all together. Two of my closest friends used to call everyday and we could spend hours on the phone. Now I haven't heard from either one of them in months.

But I will say, I have found some funny sides to this kind of thing.

The hubs has a Great Aunt who is in her 90's and lives in Connecticut. She's a very interesting lady, spent her life working for the FBI but she won't tell you what she did, at 80 she wanted a new car (new car to her meant used car new to her) but the one she wanted was a stick shift so she taught herself how to drive it. She's never been married or have any children and she's not exactly the kind of person to pity someone.

During a phone call, my MIL was talking to her and Aunt said "So where is Tracy? Is she around, could I talk to her?" My MIL told her that I had just gone upstairs to use the bathroom. Aunt did this tisk, tisk noise and said "Oh that poor thing."

When I got on the phone I said "I know, right? You'd think that they could fix something! I mean, I have MS and I still have to go pee..where's the justice in that?"

See, I'm still me.

The thing is, I'm a little more dangerous now. Think about it. Most of the time I use a cane. The cane is long. One time, the hubs said something and I wanted to hit him but he was out of reach so I whacked him with the cane. The hubs says that the cane hurts.

And I just found out yesterday that I'm getting my motorized scooter. Just think of the damage I'll be able to do to someone with that puppy! And I can double it if I hold the cane while driving the scooter. No one is safe!

I'm not saying that it doesn't hurt that these people have disappeared from my life or some of the ones who have stayed look at me differently. I'm just hoping that if I keep showing them that I'm still here, they'll get it. And the ones that are gone, I guess they were in my life as long as they were supposed to be, right?

At Everyone Here is Jim Dandy, we find Cure Or Curse, Part II
Let me explain.

Yesterday I wrote of the built-in caveat afforded by MS to the MS sufferer, which goes something like this:

I would really like to rake up those leaves in the yard, but the MS fatigue has just totally wiped me out today. Perhaps I’ll feel better tomorrow (or maybe it will rain and render the idea moot anyway).

I would really love to work overtime for the next five days, but my body simply will not cooperate. As a matter of fact, I need some time off (and, btw, you’re required by law to give it to me). Damn MS!

Honey, I absolutely intended to take your car to the DMV and to stop by the bank and to pick up those things you wanted at the craft shop, but I just simply forgot. It all just fell through a hole in my brain.

You see?

Now have I ever used my disease in such an insincere and dishonorable manner? Of course not. God forbid. I’m just saying.

The thing is, there is really no need for dishonesty, for the conditions referred to above—fatigue, exhaustion, confusion, limitation—are baseline with MS, always present. These are the things we struggle daily and hourly against. We may sometimes feel a bit better (in fits and starts, anyway), and we may sometimes feel a bit worse. Sometimes we feel a lot worse.

We may be slow, lazy, and stupid, but at least we have a good excuse for it.

But, of course, people don’t like excuses (when they are, that is, the excuses of other people), nor do we who have MS like excuses, even our own. We make choices on a daily basis whether to give in to our illness, and thus end up feeling guilty and worthless, or whether to press on against the increasing solidity of the wall thrown up in our path by the symptoms which define our disease.

We have, to begin with, our own expectations. As healthy, non-diseased people, we were used to coming at least somewhere near to satisfying our own expectations. Now, with MS, what we expect from ourselves has not changed, but the ability, or anything like it, to live up our expectations has deteriorated quite significantly (kind of like the present economic situation in the US). It would be nice if our investments could reach anticipated goals, as they used to do, but the fact is that the bank is broke, the market has crashed, and our resources are sadly diminished.

The first rule of having to disappoint others is that this comes only after disappointing ourselves.

This is the key most often overlooked by those who do not have our disease. Often I find myself wishing that people would think this through a little more completely.

What, are we happy with being lazy, happy with being weak, happy with being exhausted, happy with being stupid?

Think again, right?

Please try to remember me as I was before. If I seem different now from what I was then, please ask yourself what happened in between. And believe me when I tell you that I'm trying, and that I am trying much harder now than I would have then.

This concludes the 23rd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 27, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Monday, November 24, 2008.

Thank you.
Comments for this post.


  1. Thanks for continually hostessing the Carnival, Lisa.

  2. This post hits the nail on the head. Even when you make a good choice for health reasons you end up second-guessing it and asking yourself, "Could I have done more or pushed myself a bit more?"

  3. Thanks for involving me in the carnival Lisa.
    And the second post was really right on for me.
    Thanks so much!

  4. Excellent Carnival. Really, really god posts.