Sunday, December 27, 2009

Perfectly Fine

This week an unexpected nudge from an even more unexpected source reminded me that I’ve neglected this place for far too long. Honesty requires that I confess that my absence here is probably a form of denial … an opportunity to make MS invisible in some imaginary way. And another part of the avoidance is that, in many ways, I feel not only incredibly blessed … but also intensely guilty that my MS experience is so easy compared to what so many others face.

A couple of down weeks around Thanksgiving have lingered through the holidays. One Sunday afternoon, I went from perfectly wonderful to incredibly dizzy and nauseous in a matter of moments. And as usual, first there’s the little voice trying to convince me that it’s just a bug or food-poisoning or some other benign thing that everyone gets and passes quickly. A couple of days trapped in bed cured me of that delusion.

How do I explain that feeling? It felt like being extremely car sick … or extremely drunk … except it was there even when I wasn’t moving … and I hadn’t had anything except tea to drink. And it didn’t go away … ever. MS patients become expert at discriminating between ‘normal’ stuff and ‘MS’ stuff. Then there’s the whole process of determining whether it’s something to just wait out or if we should visit the doctor, jump on the steroid bandwagon and take whatever other medicines he prescribes for the symptoms. I opted for a phone call … which got me the advice to take Dramamine, but for no more than 10 days in a row … and a prescription for Prednisone. The Prednisone is an adventure all of its own … starts with a high dose then tapers off over 10 days … a much kinder option than Solu-Medrol. The first two days are awesome … I’m in a good mood, happy, energetic. Then the sleeplessness sets in and I go a few days without sleep … literally. And then I am grumpy and irritable for a few more days. And then, blissfully back to ‘normal’ again.

That’s the external process. The internal is more complex. Inside the voices begin whispering. They wonder if this is the flare-up that doesn’t get better … if this is the time that a symptom becomes a permanent part of my life. You see, I have been so blessed to this point … my symptoms all ‘sleep’ most of the time … most of the time my life is not very different than it would be without MS. I have no real reason to believe that will change for me. My diagnosis was early. The therapies work well for me. But the voices still whisper. And I know that the voices whisper in the minds of my children. I can see it in their faces and hear it in their questions. And because I’m the mom … because no matter how adult they get, I will always be the mom … I tease them and tell them how silly they are and that I’m perfectly fine.

And I am.


  1. I love you.
    You are positive and beautiful and radiant.
    Keep being happy.

  2. I saw your new post. I'm guessing that I was the unexpected source. Good! I'm so glad you accepted my "nudge".

    I am an insufferable insomnia, without the Prednisone. Have been all my life. I do not take anything prescribed for it. I'd usually just deal with it - often going days without sleep. I understand the aggravation, frustration, and just being tired. About a year ago, Jack MADE me go to the doctor who gave me a prescription for Ambien, but strongly suggested that I try Melatonin first, because the prescrption remedies have severe rebound, whereas melatonin does not. Rebound being that - as soon as you stop taking it - your symptoms return.

    Melatonin is naturally produced by your body. You can get a bottle of 250 - 1 mg capsules at the health food store for about $13. My doctor thinks my body simply does not produce enough. Please check with your doctor that this wouldn't adversely impact your condition or treatments. I typically only need one pill to help me sleep. Within an hour, I'm asleep.

    Hope this possible MS bout goes away. Yes, you are fortunate to have a case that is more often in remission than it is active.

    For Xmas, we gave my ex- motorized bike pedals. It allows his legs to move without his providing the locomotion - thereby not contributing to his feeling tired, while keeping blood clots from developing in his legs. I think you are still energetic enough to exercise on your own, which will go a long way to fending off problems like his. Something to keep in mind if that changes.

    I offer these thoughts and experiences to you, because I know how much my son worries about his Dad....and I know Matt and Meghan worry about you, too. We're their Moms - we are supposed to be invincible! :-) I offer them with the best of intentions....

    Best regards - Beth

  3. How about an even more unexpected nudge from an even more unexpected source?

    During some of Beth's discussions with our daughter when we were in AZ, we discovered that you enjoy walking during the coolest part of the day...and it makes both of our children nervous.

    Last year, we purchased a small piece of exercise equipment for Beth's ex-husband. He suffers from MS in an advanced stage and is wheelchair bound. His use of this equipment has reduced the potential for blood clot formation in his legs, and has helped him with muscle tone in his legs and arms. He uses it at least three times each day for his legs and arms, and has said it is a great benefit to him. We purchased this equipment for you, and it should be delivered to your house sometime in the next week.

    There's nothing like a walk in the open air. This piece of equipment would provide an alternative if the need arises.

    You are a gifted writer. Keep up the blog for those who could benefit from your experience and the ability to put it into words.


  4. Jack, thank you for your encouragement and for being there for the kids ... I'll follow up with email ... I have the 'pedals' all set up ... thanks to you both!!