Tuesday, November 9, 2010

We're talking about baby steps, here...

I would like to write a brief follow-up to my last post and to Diane's comment.  Let me say first that Diane had a bad experience but it didn't drive her to not try again using a different approach (i.e. a smaller dose).  Honestly, 50K seems like a lot to me... I've heard of that amount per week - were you taking that daily?  Holy Crap!  (I have no medical background, so take for what it's worth).  You can't really dispute the data, so I think it's an avenue you all should explore if you haven't yet.  Keep in mind that I'm getting what I think are good results with 4,000 per day (which I thought was a lot).  As I mentioned in my last post, you should always check with your doctor before taking something like that on.  Heck - you're probably getting labs done every 6 months anyway, right?

The bigger picture, though, is something you've heard me harp on a bit already.  THERE'S NO SILVER BULLET - so don't hold your breath waiting for it.  By now you've certainly figured out that MS is caused by any number of risk factors, environmental and genetic, that happened to align in our favor.  Lucky us!  Is it so hard to believe, then, that the solution may not be any one approach, but rather a combination of things that attack the disease and it's symptoms from various angles.  Also keep in mind that this concept is fairly universal, particularly with the progressive autoimmune diseases.

This is what I was driving at in the "science experiment" post.  Keep trying stuff and figure out what works for you.  I'm convinced that MANY PEOPLE WITH CHRONIC OR PROGRESSIVE DISEASES don't have the discipline to try something new or branch outside of their comfort zone.  It's a lot less work to sit around and feel sorry for yourself and be a victim than it is making an effort to improve your situation.  We're talking about BABY STEPS, here.  Every little thing that you can do to slow the progression or at least your loss in function/mental capacity/whatever, buys you time. and improves your quality of life.  Sitting back an doing nothing is basically like painting yourself into a corner.  If you can improve in one small area, suddenly tackling a different area doesn't seem quite so daunting a task.  STOP LOOKING FOR SYMPATHY AND TAKE SOME RESPONSIBILITY FOR YOURSELF.

A lot of people don't know where to start.  Try a diary.  Write down everything you do in a day and, after a week, try to identify patterns and start making adjustments.  Don't change everything at once or you won't know what worked, and give each one time.  Remember, you're looking at many different aspects about how you feel (fatigue, balance, strength, speech, concentration, or whatever your particular symptoms are).  I find that most things are linked to fatigue (i.e. everything gets worse when I'm tired), so that's where I started.  Think about things like sugar, caffeine, other simple carbs, proteins, how often you eat and what times, when/if you exercise, how long you sleep, etc, etc.  Also, note the time of day that you do things - for example, I can handle a sweet treat much better in the evening than I can in the morning or afternoon.

I'll tell you what has been working for me, and this is by no means the end of it, but I am going to try and stabilize a bit before moving on.  I have cut caffeine almost completely out of my diet, cut the carbs (at least simple carbs) between meals, increased my vitamin D3 intake to 4000 iu/day, ride a recumbent exercise bike (so I don't fall on my face) for 10-15 minutes 4-5 times/week, and increased my sleep (to 8-9 hours).  The other thing I do is to take one of those 5-hour Energy shots at around 11 or 12.  Yes, this has some caffeine, and it seems like hocus-pocus, but it works for me.  I don't take it every single day, but I typically crash in the afternoon - not as bad since I eased up on the coffee and sweets, but I drink one when I first feel it coming on.  This carries me pretty reliably through the end of the day.  I can read at night - something I don't think I've been able to do for most of my adult life, and am much more attentive at work.

Again, this is working for me, but you have to figure out what works for you.  I feel mentally stronger than I have for as long as I can remember - long before my diagnosis.  Physically, I'm not even in the neighborhood, but I'll take what I can get.  FIGURE IT OUT AND STOP WAITING FOR SOMEONE TO DO IT FOR YOU!  You know how you feel and the best neurologist can't tell you what's making you feel better.  I'm a believer in medical research (obviously), but the tools aren't good enough for them to know how you're feeling.  "What's your pain on a 1-5 scale?"  Ummm, doesn't that depend on my pain tolerance?  What's baseline?  I also always love the test where I move my finger from the tip of my nose to their finger.  I guess I'm fine if I can hit the finger.  Apparently it makes no difference that what's the equivalent to hitting the broad side of a barn to you is like threading a needle to me.  If I hit your finger, it's all good...

The moral of the story - it's all on you.  Figure it out.

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