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Member
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Join Date: Jan 2008
Location: Southern California
Posts: 308
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Member
Join Date: Jan 2008
Location: Southern California
Posts: 308
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I'm a wreck....
Hi everyone,
I so much appreciate all of your responses - and most importantly, I really do love that you can express differences of opinions and it can be okay! that is truly the hallmark of a great community in my opinion.
Snoopy - your experience sounds amazing. I appreciate your sharing it with me.
The bird - I hear your point, too.
both of you make valid points.
And of course, the most pressing thing (besides the incredible pain and pressure behing my right eye!) - is that this has only been going on for 6.5 weeks. ALL of it is new. And here I am on my second dose of IVSM. I'm already changing from one DMD to another. Switching from one fatigue med to another.
I know it's too fast - however, I'm kinda on automatic pilot - this is what I do - this is how I function - b/c if not, I fear I will just crawl up in a hole and not come out....I do have a therapist - and we do have frank discussions about all of this. (and of course, no matter how you cut it, right now it all sucks.) I'm also a psychotherapist myself! I'm working hard to just keep it together. I'm also just plain old tired - not just the fatigue stuff...but just tired. I live alone, I'm single, I don't have a ton of friends, and I don't have family. I feel like if one more thing comes my way - I just won't be able to do it anymore. Last week, my toilet broke. This weekend, my garbage disposal broke. My cell fone died. I know, nothing major...and I have warranties on all of that - it's just a phone call or two to make - but I'm zonked - just taking care of life stuff on top of the MS - I'm just exhausted.
The simplest little things are sending me over the edge. Last week I couldn't find my lil ice pack thingy that I use for after my copaxone shot (no longer taking now in preparation for Tysabri) - and I started to cry. Now - thing is - I'm not someone who cries! I'm walking around with a headache for over six weeks now - that rates about a 6 on a scale of 1-10. I have pain meds for it (vicodin) - but I won't let myself take it unless I hit a 9 or 10. Not to mention, when I take it, I only get relief for 2 hours, 2.5 max. Yet, I shouldn't wait to a 10 to take it. I'm going nuts.
I'm sorry, I don't mean to complain. I went to the grocery store to get something to eat for dinner. I looked in my cart - and realized I didn't get one thing that qualified as "food" (and not a snack or binge food) - but decided I'd just stop for chicken at fast food place...full well knowing, by the time I got into my car, I would not want to stop.  I was right. On top of that, I REALLY truly went into the store to get Hershey's kisses with caramel...of which, they didn't have. That almost made me cry. Not that I needed the chocolate by any means.
Probably the thing that is getting me is that on Fri at my neuro appointment, he let me know that he doesn't think it is RRMS...SPMS at best....but who knows. I haven't told anyone yet - except for my therapist today. Like I said, trying to hold it together.
I joined a NMSS support group - it is a phone support group for newly diagnosed - except I don't feel like it's a good fit - b/c even though we are all newly dx, all the others have been "sick" or had symptoms for a year or more...so while the "label" is new - the other part of it isn't. All of this is new to me. I just don't know how to do this. Will this exacerbation ever end.....when will it end? Of course, there are never any answers...b/c no one knows. And that's the suckiest part of it!!
And I'm only 6.5 weeks into this - and the "unknown" of it all is just getting to me.
Now I feel all whiny...and I'm mad at myself. 
Don't feel like you need to play a violin for me  - I'm not playing one for myself - I'm too busy doing whatever I can to stay above water :sinking:
Thanks,
~Keri
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