Monday, January 11, 2010

Is It Getting Worse?

Having to pay attention to every single ailment can become extremely nerve racking. Maybe I don't need to pay attention so much. But, maybe I should.

I don't really know.

I find myself providing great support to others but I am still here trying to find my own way through it all. Still learning and trying to understand what I'm really supposed to do. How am I really supposed to feel? And how much attention given to the MS and the symptoms that accompany it, is too much?

All great questions that I think I'll have to learn the answers to on my own. I'll have to find my own way. A new way, a new normal.

For the last few days I've been noticing that my blurred vision has become more frequent and more disturbing. Lasting longer, being blurrier, and at times, pissing me off. I've also noticed that when fatigue sets in, it gets much worse. But then I calmly tell myself, "It will pass. Don't stress. It will pass."

And it does. But not as quickly as it use to.

So what do I do? I'm not use to this 'paying attention' thing. And when I tried to pay attention to every single ailment prior to my diagnosis, I drove myself insane. I had a notebook I walked around with and in some sense, that notebook was like my lifeline. Sort of like a terminally ill person who must walk around with their IV cart.

I didn't want to be tied down. I did it for a month or so to satisfy my neuro and after he was happy, I was done. I don't want to be that way now but I do see the importance of keeping track. I think. I mean, I need to know what's MS and what's not, right? I need to inform my neuro of new symptoms, exasperated ones, and whatever else. And he'll determine what's important information and what isn't. Right? I hope so.

So hear I am, with what I think is worsening symptoms. What does that mean? Am I in a relapse? I have no IDEA! I'm clear of one time (maybe two) that I was in a relapse. The time my vertigo lasted more than 24 hours and sent me to my GP who said, "You may have MS". And the second was a couple of months after that when for about 4 days straight I couldn't keep anything down and was also experiencing vertigo.

Some think I'm a little WACKO for paying such attention to my body and symptoms. I kind of just think I'm thorough. Either way, I think some symptoms are getting worse. So I'm just going to have to focus a little bit more on ignoring them, after I write them down for my neuro to look over.


Kristin Bennett said...

I was diagnosed in 2001, so kind of a long time ago and still don't quite know the difference between when I'm feeling an exacerbation or a 'symptom'. I don't track everything, pretty much only things that make an impact on living (extreme numbness for instance). I also see many kinds of specialists, Naturopath, Acupuncture, PCP, and of course a Neuro. It's never bad to keep track unless it makes you focus too much on the bad, maybe keep a symptom journal and a 'happy' journal, and enter things that happened that made you feel happy in the happy one after each symptom entry. Stuff like that helps me :-)

Tammy said...

I think you should enter in your journal what you feel are noticable differences or things that seem different. I was doing the journal/lifeline thing at the beginning too. I know how you feel about wanting to get away from it. Sometimes MS makes you sit up & take notice. That's when I would take note.

My blurry vision does get extreme at times too. It also is worse the more tired I get. As far as calling the neuro, it depends on how long till your next scheduled appt. If it's not too far off you probably could wait, but if it is, you may want to move up your appt. I always say trust your gut, it'll tell you if you need to really worry. Feel better!

Julia said...

You are not wacko, you are just doing what you know and need right now. I am not sure that we will ever come to terms with this disease, but at least we can do whatever it is to make US happy.

I know that I am irrational about what is going on with me at times, but with so many possible signs and symptoms, I am not sure that I have another option. My fear is that I will start to ignore things that I should be paying more attention to. At the same time I don't want MS to become the only thing I think about.

So I guess I am going to have to figure some things out for myself as well. MS sucks sometimes!