Tuesday, October 12, 2010

Steady as she goes

Today is officially one month post 2nd venogram.  Am I walking on water?  No.  Am I walking a little better?  Yes.  Is that the only good news to report?  No!

Am I going to post any more youtube videos? ...eh, probably not. Mostly due to this blog quote I found, "There was one young lady crucialsuz who put up her pre and post treatment videos on youtube (walking in the hallway). One appreciates her candor in putting them up. On her comment she felt there were improvements, but as one person stated they could not see any appreciable difference between the two videos (in my opinion I have to agree). But the true believers would have none of it, they were happy to see her “improvement” and chose to insult the skeptic. On the whole sad but not unexpected."

I am certainly not trying to feed the hype machine or give anyone false expectations. So screw it, no more videos. The naysayers can "nay" all they want and I'll continue to "yea" quietly and avoid youtube. So, phhhhhhtht on you.  And by the way: I can use "One" instead of "I" to make myself sound more credible, too.  I'm also really good at saying things "passive aggressively" in "quotations" to connote "sarcasm".  What a boner.

Now back to the good stuff.  First and foremost: I am sleeping through the night - or if I need to get up it's only been once a night (and that's maybe once a week on average).  Getting up to pee 2, 3, 4, sometimes 5 times a night can really edit a good night's sleep into neat little (pointless) bites of time.  Not exactly a good way to feel rested.  But no more!  And I can have a little drink of some liquid (alcoholic or not) after 8 pm and not have to worry about that affecting my sleep habits.  What a relief. 

And my "jimmy legs" as a friend calls it-  the infuriating, interrupting, involuntary evening leg twitch is not completely gone, but the frequency is waaay, waaay down: about 20 times in a 6 hour period as opposed to countless twitches every 1 to 2 minutes for hours on end. That also cut into my precious sleep time.  Now?  Not so much.

Spasticity is still better too, though not completely resolved.

I can wiggle my toes!  Crazy.

Am I thankful for this stuff? 1000%.  Do I want more?  Um, yeah.  Who wouldn't. And I think it's safe to call these improvements.  Without quotation marks.

I didn't have any expectations this time around.  Honestly.  I didn't want the weight of disappointment on my chest that made me such a miserable person to be around.  But hope has its way of gnawing a little space in your heart.  Of course I get frustrated.  It's just no so all-consuming this time around. 

So what now?  Oh, this is the part that sucks.  Physical therapy.  Six days a week - in the office twice a week and then a routine at home the other four.  It's hard.  Really effing hard.  Sometimes I'm concentrating so much that I forget to breathe.  Kind of an important thing to do when you're exercising, no?  I feel like I'm banging my head against a wall - I don't know why I think this should be easier.  Then I remember what my physical therapist said to me, "I've never seen any patient with MS show this kind of improvement."  Of course, he's seen people on their way back from exacerbations regain functions; that's just how MS works.  But I've been using a walker for 5 years and a scooter (outside of the house) for 3.  That's a pretty low place of function to start from.

Yes, I'm still using my walker.  And the scooter, too.  But I have to believe that all of this work is for something.  That thought, naturally, isn't from the same part of my brain that thinks MS is a punishment for something I did when I was younger.  Let's run down the list of what might be the cause for such punishment:
  1. Murder?  Nope
  2. Promiscuity?  Nope
  3. Buying and use of illegal drugs?  Nope
  4. Hit and run?  Nope
  5. Gossip Girl level rumor spreading, maliciousness or ugliness?  Nope
  6. White shoes after Labor Day?  Nope
Have I done bad things?  Yes. (petty things: teenage shoplifting/doobie puffing/smack talking)  All of which I've asked for forgiveness for and not repeated. But none of them warrant this kind of punishment.

Maybe it's because I'm inherently lazy and do a really good job of feeling sorry for myself.  Something more abstract.  And I'm admittedly neurotic - and quite frankly I've been pretty selfish this summer.

A friend of mine gave me a book for Christmas called 29 Gifts: How a Month of Giving Can Change Your Life.  The author has MS.  She claims that after just two weeks of giving she started walking better and now walks without a cane and has had a clean MRI for three years.  Seriously?!  That might just fall into the "if it's too good to be true it probably is" category.  I dunno if the two are directly related.  But, the idea of being more giving intrigued me.  If for no other reason than to stop thinking about myself for a little bit every day, for crying out loud.  She gets more involved, calling it a "psychic shift".  Whatever you want to call it - I'm ready to start changing the way I think.

I'm on day 12.  It's been really easy and I find myself looking for more and more things to give/people to give to every day.  It doesn't have to be something that will change someone's life - for example, I let someone in front of me in a jammed parking lot this past Saturday.  I think something good is happening to me.  We shall see.

One sentence really leaped off the page at me - so much so that I had to read it four or five times.  In speaking about how this "assignment" changed her, she wrote: "The strength was there inside me the whole time - it just didn't feel worth it to come up with the energy I would need to claim it."

To say it leaped isn't quite accurate. It actually slapped me good and hard across the face.  Maybe, just maybe, that goes back to my dysfunctional relationship with apathy and laziness.  I just haven't felt like it was worth it to try.  Do I believe that CCSVI is real?  Absolutely.  Do I think it's done me good?  Yes.  Do I think it's reignited some motivation that I've always had and just forgot about?  Yes.  And maybe that's the biggest gift to me.  To be motivated enough to make it happen in my hometown, to have it done (twice in three months) and then still want to kick my own ass at physical therapy - with no promise of immediate improvement and not worry about it.  Denison Witmer sings: "I used to worry all the time/But I moved on to live my life now".  Amen!

I also think that patience has been a huge gift.  Waiting out this whole process, then waiting to get better.  I'm more relaxed about it than I used to be.  I think I'm settled with the idea that maybe this is good as it gets.  If not, awesome.  But I have a good life.  I have a really good marriage (I didn't say perfect; there's no such thing), a man who loves me, a really solid support system of friends and family, we own our own home, we're debt free (that's huge), I'm finally at a healthy weight after years of struggle ...and then there's music.  Music, the best coping mechanism of all time.  Writing songs saves me.  It digs me out of some pretty dark holes.  And let's not forget about how MS has affected me.  It could have screwed me up in so many other ways.  Here's what I do have:
  • My cognition is intact
  • I am pain-free
  • I can still sing 
  • I can still hear
  • I can still see
  • I can still breathe
  • I can still speak clearly
  • I can still play instruments (not that well, but I'm not so sure that's a direct result of MS)
  • I have zero tremors- anywhere
  • I have great upper body strength
Really, when it comes down to it: it's just my legs.  That's really not so bad.  Of course, this kind of lift is a pain when it's raining and there's no covered parking (though I do dig that guy's snazzy shirt) and it would be nice to stop asking for help so much.

So why haven't I shown massive improvements?  Who knows.  I don't want to waste any more energy thinking about that.  Sure, I want to walk better.  I also want children, perfect pitch, mad guitar skills, a bigger house, a bigger salary, a perfect body and a lightening fast metabolism.  Some of that might happen... someday.  But if it doesn't my life isn't over - not hardly.  I'm just trying to work with what I've got right now, to manage my day to day, while I try to make myself better and stronger.  Will I get worse?  I don't know - but then again nobody knows what's in store for the future so why waste precious energy obsessing over it.

The logic I keep returning to: everyone has a cross to bear.  I can't think of one person I know that truly "has it all".  Their struggles may not be as obvious as mine: heartbreak, loneliness, chemical dependence - it goes on and on and on.  I haven't given up and I don't plan to.  But I just need to remind myself of all the amazing things in my life.  That should perk me up a bit. Now off to exercise. Cue the Rocky theme. This one's good, too (she wrote, with obvious sarcasm).

1 comment:

  1. Thank you for this! It is nice for somebody to put some of my thoughts into words!

    ReplyDelete