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Friday, January 22, 2010

Making Up My Mind

Today one of my fellow MS buddies wrote a comment defining the difference between a "Flare-up" and a "Relapse" to help someone newly diagnosed. I found it very informative and felt it might be helpful to my friends and family. I know many people worry about me and MS. More because this disease is so hard to understand and even harder for people to "see".

Just so you know, I have read this type of explanation in books and in other resources, so what she wrote is true and valid. So here it goes:

"If it's a Pseudo-Exacerbation or Flare-up it'll last less than 24-48 hours consistently.

If it's a real relapse, it's considered the worsening of existing symptoms and/or the appearance of new symptoms that last consistently for more than 24-48 hrs.

If you're having a true relapse then you need to get to your Dr ASAP so you can either be treated, if necessary, and otherwise document the relapse.

If the relapse involves your eyes, you need to wait no more than 24 hrs to get medical care because the longer you wait, it is less likely that the steroids will help you recover the damage to your eyes.

...this is a guideline to you, so you know when to worry and what is "normal".

... if it's something that happens to you everyday, then yes, it could be considered a flare-up. I go thru times when I feel like I'm having a flare-up all the time, everyday ...this is MS just being aggressive so far as your symptoms are concerned."

The above is not a direct quote. Much of it is what she wrote, but some is paraphrased. I added the quotation marks simply to distinguish between my voice and her voice.

I have also read that when your symptoms come and go it isn't considered a flare-up, but MS "reminding you it is still there".

There are days when I feel better than usually and others I feel worse, but many of my symptoms never go away. Someday, that may change. The shots I take are designed to keep me from getting worse. It cannot repair the damage that has been done already. So on my bad days, when I say MS sucks, please don't panic. When I panic, I'll let you know.

This is my life now and I choose to live it informed and with a sense of humor. Some may not find the same things funny that I do, which is fine, but I need to laugh as part of my coping mechanism. I am still me and I just have days that are more frustrating than others, but I am alive and moving and I will continue to stay positive.

I fell twice this week. I knew it was gonna happen. The first time, I knew I was due to actually hit the ground. I almost fall several times a week, but I usually catch myself. I've been averaging every 3-4 months of meeting the concrete or floor. My last fall was in October. Not that I plan these things, but they ask me at my neurology appts when I fell last. So when I said October, I thought about the time that had passed. Basically, I know to try and step with a little more care and purpose. I actually made it thru my whole paper route on Sunday. I threw the last paper turned around and BOOM! Hello Driveway!

The second fall I knew the conditions were ripe for me. I had overslept and had been experiencing vertigo the last few days. Add this to my current leg weakness and that I am now rushing to finish delivering my papers and, well you can see where this is going. Throw the paper, spin around, arms flail, hands brace and landing SMACK! on my right side, OUCH! Started to cry and curse, but told myself I didn't have time for that so I got up and kept going. Later that day I began limping. My sister asked why. I said "I don't know, but my leg hurts." (This is a normal thing for me.) But then I remembered, "Oh yeah. I fell this morning and landed on this whole leg & hip." She couldn't understand how I could forget it happening. It's just a part of my life. It sucks, but I'm not gonna dwell on it. I am careful and aware. Now let's move on. I posted as my status on Facebook today "That's not flying! That's...Falling with style." --Woody form Toy Story." I like it cuz that's how I have Made up My fall with style!


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