7.26.2010

Spinning My Wheels

What little reliable information I can find about Functional Movement Disorders says that, while improvement may occur over time, there will be highs and lows in that overall trend toward improvement.
I'm not sure if the last week or so has been a low or a plateau or what, but it hasn't been pleasant.

I've been dealing with a constant sore throat and general feeling of mank for a month or more. I often describe my general overall sense of health as feeling as though I'm just coming down with or just getting over a cold or flu. This has been a touch worse, but something I can generally cope with.  I'm guessing it's more related to allergies and Chronic Fatigue Syndrome than FMD.  I have noticed that the general feeling of flu-ish-ness gets worse if I over do it physically. 

The past week or so, though, has seen what seem to me anyway, like setbacks or stuckedness with my movement issues.  I've been far more tremory.  A certain level of tremor in my hands is "normal" for me and has been since about 2007, but this has been body-wide.  Wii Fit Plus exercises have been more challenging and I haven't been doing as well at them - that, at least, is a more objective measure than my overall sense - the scores are there to see.  And I can't seem to push past 12 or 13 minutes without trouble.

I've had or been getting over or coming down with a migraine what seems like almost constantly all summer.

I've been under a bit of stress - I suppose the job interview last week might have contributed a bit.  My pelvic movements have been the worst they've been since May starting Wednesday evening.  I'd barely had *any* major involuntary movement in my pelvis/lower torso since May, actually.  It's deeply frustrating.  It's also uncomfortable. 

I've been in more pain in general lately and had more brain-fog days.

I've been sleeping 12-14 hours a day and still feeling exhausted.  And my sleep schedule is shot to hell.

It would be easy, at this point, to say "screw it" and give up, but obviously that's not what I'm going to do.  I do my Wii Fit every day.  I try to get out and walk (though the heat wave made that hard).  My new therapist has arrived and settled in and I had my first appointment with her last week.  My formal physical therapy is coming up in August.  I try to be as active as my brain and body allow in any given day.  It's very rare I spend a day in bed.

It's just deeply frustrating and a little frightening.  I'm trying, I really am and I do feel better, but not well.  And the very nature of FMD or psychogenic disorders or whatever you want to call them suggests that the ability to heal resides directly with me.  Which makes it very easy to feel guilty about not being better.  To wonder if I really want to be better.  Is my brain playing tricks on me?  Am I playing tricks on myself?  Despite all the evidence that I am reasonably insightful am I missing some huge part of the picture.  Am I, in fact, seeing some benefit to being sick that I just refuse to acknowledge?  Something powerful enough to keep me disabled? 
Or is that a bunch of bull-shit?
And on top of that - does it matter?
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8 comments:

Julie said...

Hugs. You're over-thinking. I know this, because I do it myself and recognize the signs. Of COURSE you want to feel better. Unfortunately any healing process takes time, and anything involving the nervous system is doubly slow. Tell yourself you're learning a valuable lesson about patience. Or kick some stuffed animals. Whatever works.

irisphnx said...

I agree with the over-thinking and thinking over and over and over. The mind-body connection exists but doesn't mean you ARE keeping yourself from getting better. You're doing a whole lot of hard work and you're being hard on yourself. Give your body and mind some time. Love yourself!

Shoveling Ferret said...

Thanks! At some point I will be able to do the serene "this is what it is" all the time instead of bouncing between that, feeling like total crap, or having a good day and so over-doing it that it takes me a week to recover.

Anonymous said...

sorry your feeling bad. i know how it is, believe me. did you get my email? maybe you shouldn't read it as it calls the whole idea of PMD/Functional disorders into question.

It's a double edged sword. They tell you to believe the diagnosis in order to heal. But if you are miss diagnosed, you are wasting valuable time and your health not finding the "real" problem.

believe me, i am in the same boat. for what it's worth, i don't believe i am doing this too myself. i think that something is wrong in the works.

no one chooses to be as sick as we are, not consciously or unconsciously.

that having been said, i'm glad your nana is doing better...

Alwen said...

This whole "you have to want to heal" thing pushes 100 buttons for me, so a little backstory: I grew up with a mom who is a Christian Scientist and the idea that you could "know the truth" and your physical problems would go bye-bye.

Well, maybe. In some cases. This religion grew up in an era where they were still discovering what I think of as basic science.

What I think is, from the extent of your physical symptoms, there is something going on. To the extent it involves your brain, of course it's in your head - that's where we keep our brains. So is a crippling migraine in my head. That doesn't make the pain or the physical symptoms less real.

Have I recommended "The Brain That Changes Itself" by Norman Doidge to you yet? Awesome book.

My personal feeling is that as they learn more about how a healthy brain functions and what impedes that function, the way they are treating stuff now is going to look as primitive as using white lead in paint or arsenic in health tonics.

Shoveling Ferret said...

Bbbut, white lead makes my skin look so nice and, uh, white!


In all seriousness, you make several good points, Alwen. I'm reminded of how MS used to be perceived - often as "hysteria" with patients sent to see psychiatrists, especially as women are more prone to MS. Fun.

Anonymous - I did get your email. Waiting until I feel a bit better to get into it too much.

Anonymous said...

No worries. Let me know what you think of the email when you have a chance.

Let me play "House" (the doctor on tv, not the fun kid's game) for a second and mention a couple of differential diagnosis for you:

could it be Lyme disease?

http://www.youtube.com/watch?v=sxWgS0XLVqw

Like that scourge of the early part of the 20th century, syphillis, Lyme is called "the great imitator".

It's a mofo of an illness because it's often missed or misdiagnosed. Could you have been bitten?

Do you have "silver" fillings? Amalgam fillings are 50% mercury, the 2nd most toxic substance on the earth. It's released whenever a person who has them chews, smokes, drinks hot drinks, etc...

http://www.youtube.com/watch?v=lZzCRHcZ2GY

Might want to look into these possibilities.

Let me know what you think when you have a chance via email.

Mel said...

If you drink a lot of tea, you might want to check into the effects of fluoride via Google. Tea has tremendous amounts of fluoride which also mimics a lot of other illnesses, like the brain fog. I gave up tea and toothpaste with fluoride (and anything fluoride at the dentist is gone, too) over five years ago. I started to drink tamarind juice which will help remove some of the fluoride, but not all of it. The brain fog is now gone and the terrible GERDS I had is gone as well. I'm afraid I was too late for the joint/bone issues though.

Do some research and make up your own mind. I feel we've been bamboozled by the government and the aluminum industry over fluoride waste products and we're just being forcefed poison in our water, fertiizers and pesticides.