Monday, May 23, 2011

That "I've Gotta Do Something" Feeling

Every once in a while I wake up feeling "I'm getting worse and I better do something--fast."  Oddly, not once has it actually been true that I'm far worse than I was the day before, though I know that definitely can happen, especially with relapsing-remitting MS (RRMS). I probably have the PPMS (primary-progressive) form, so I've never noticed day-to-day changes; I can only see them looking back over six months or a year.                                                                                                                                                                                
Sometimes when I panic, it's because I've edged over a hump of sorts that makes me just feel as if I'm screaming downhill, though probably the changes have really been happening for years.                                                                                    
So what do I do?  (I love lists, so here it comes:)
1.  Figuratively take a deep breath and literally will my heartbeat to quit flirting with the stratosphere.       
2.  Tell myself that in the morning I'll figure out what all my options are. Yep, you guessed it--it's usually in the middle of the night that I panic.  
3.  Surround myself with a golden light, think of something happy and go back to sleep. I admit it can take a while
4.  In the morning, if I panic again, or if I have a sense that it's time to face something, that's when I think it through and start searching on the internet. I can always find someone talking about my particular bugaboo.
5.  Plan it, do it, get it or forget it.
Plan It, Do It, Get It:  When I decided I was seriously losing mobility, (funny how you can stumble along for months not noticing that you can't walk very well, isn't it?) that's definitely a big hump, so I looked around for all the possibilities that would help keep me mobile - foot drop devices, scooters, rolling desk chair on a hard mat.... I love the wind in my hair when I let my little three-wheeler out to its full 4 mph and race ahead. I didn't know how much I had missed being able to hurry!                                                                                                                                              
Forget It:  When I wake up thinking that I should be doing something--I spend time on it. However, when I wake up straining to remember what I should be worrying about--well heck, I recognize that particular brand of insanity.                                                                               
When I can't do a thing; when my nose is flattened against a wall; when there are no options I haven't tried, then I take charge of accepting the situation. Of course that's the hardest thing--of course it is, but I know how to do it and when I get it done it always brings me some peace. I've been thinking about how to describe my process for this but I don't have it in hand yet. That'll have to be for a later post.                                                                                                                                              
There is one good thing about any of these moving-into-a-new-stage episodes: I reevaluate my time and activities and quit doing quite so much of what I don't really enjoy any more. I try to do plenty of things I love.                                                                
A couple of examples: I have reconnected with reading again, ever since I got a Kindle. Being able to blow up the print was instant relief for my eyes. I can stream an episode of All Creatures Great and Small via Netflix and my Wii. I never fail to get a # of good  laughs and I always feel happy when it ends. I know I bang this drum too often but laughing is just imperative for me.                                                                                                                                                                    Whether to take or not take the drugs is so individual--no one can tell us what to do. I think I make my decisions by educated instinct. I have ruled out some drugs for myself but not others--I do spend quite a few hours each week reading and keeping up with developments at CCSVI sites like and I'm often at and Patients Like Me as well, not to mention favorite bloggers. All this keeps me feeling a part of life and in charge.                                                                                                                            
I think we just have to make the best decisions we can as the need arises.  It's smarter for me to get some fun every day than it is to fuss if I've made a wrong decision and have to do a turnaround. I tried Copaxone for a year and steroid IV's for a week and they didn't work at all but I don't have any regrets; I just won't do that again. On the other hand,  LDN (low-dose naltrexone) and low-saturated fat diets clearly do help me.                                                                                                         
I'm also waiting until they get the CCSVI thing figured out better and I was really getting impatient for a while. I contemplated a second venoplasty procedure, asking,"the next time, should I go to a place where they pay more attention to the valves, perhaps letting them 'damage' these gatekeepers," as one doc described in a well known internet video?  Will there be any long-term bad effects from that?  We just don't know.                                                                                          
I can only tell you that right now I have a "wait for it" feeling so I'm holding for a while longer, zipping around on my scooter and looking for new ways to get laughs.


  1. I hope you find something but, hurry up and wait does seems to be the normal thing. I like your scooter getting new laughs!

  2. my cousin told me about LDN - one of his friends is on it. My doctor didn't even entertain the conversation tho because it hasn't been approved here. how do you get it?

  3. Try posting the question at and/or

    I'll email you if I can think of anything else.
    The only doc I know for certain is in Minnesota.