Archive for July, 2012

Downgrading Dragons

As my long-time readers will know, my two biggest health complaints are my Chronic Fatigue Syndrome and the mystery chronic pain in my right flank.  I call it a mystery pain, because that’s exactly what it is.  It has been an almost constant companion for the past four years, and while my doctors have been able to help me decrease the level of pain I live in daily, none of them can figure out why it’s there in the first place.

I’ve talked about it before, so I won’t go into too many details now, but it started very suddenly May 27, 2008.  At first I thought I had bad food poisoning, then the pain changed from an all-encompassing stomach pain to one sharp, diamond-hard point in my right flank.  I thought my appendix had burst and rushed into my doctors, but it was not that simple.  Four years of tests, medications and trials later, it still lingers.  Less painful, yes, by a large degree most days, which I am extremely thankful for, but it is a demon who refuses to be cast out.

My Chronic Fatigue had been going on for years before the pain started, but it got much worse after, and has continued to get worse every year.  I had always seen these two problems as distinct entities; that I was battling two different dragons, if you will.  Now I’m not sure.

I’ve been doing a great deal of reading about myalgic encephalomyelitis (ME) and how it relates to Chronic Fatigue Syndrome (CFS).  It’s a bit complicated, but it boils down to this: everyone who has ME could be said to have CFS, but not everyone who has CFS has ME.  I like to think of ME as the “official” version of CFS; the one with a name that means something (instead of just calling us by one of our symptoms), the one with more science behind it, and one that doctors outside the US are more likely to take seriously.  To my knowledge, the US is the only country (except for perhaps Canada?) that calls the disease CFS; the rest of the world uses ME. 

The problem is that when the US broke off from the rest of the world in the 80’s by renaming the disease CFS (which it is believed to have happened to create an insurance loophole so insurance companies wouldn’t have to pay out on ME/CFS patients… sigh, I can believe it) the Center for Disease Control started changing the criteria for what symptoms a person must have to be diagnosed with CFS.  Currently, a person could, in theory, have no physical symptoms and still be diagnosed with CFS.  This is extremely unhelpful in our fight to be taken seriously, to state that our illness is not simply in our heads, if the CDC gives such incredibly lax rules of who to include under the banner of CFS.  It’s just a bad, messy, confusing situation.

ME, on the other hand, has a very thorough, scientific and complete internationally-agreed criteria that must be met before a person can be diagnosed with ME.  It includes very specific, physical symptoms, such as muscle pain, new or worsening headaches, post-exertion malaise, intolerance of heat/cold, unrefreshing sleep (even though three’s nothing “wrong” with your sleeping)… the list goes on and on, and I see myself in nearly every symptom.  I more than qualify, according to these carefully constructed rules, as having ME.

On one hand, it’s a little scary; the stories I hear about people with severe ME are perhaps worse than ones I’ve heard about people with severe CFS.  But on the other hand, it feels comforting to have any label, and even though there is still no cure (let alone treatment) for ME, the medical community seems to know fractionally more about it than CFS, and take it fractionally more seriously than CFS.  I will take what I can get.

But, this is what I really wanted to talk about in this post.

For the past four years, I have seen my fatigue and pain as two different issues… since it helps me to look at the world more mythically, I usually did picture them as two different dragons I was doing battle with (looking, in my mind’s eye, quite a bit like Aerin in The Hero And The Crown, smeared with kenet and Talat behind me).  But guess what?  One very common symptom for ME is mystery pain.  Not just the headaches, joint, tendon and muscle pain I already knew about, but genuine, unknown pain with no traceable origin, which can be very severe.

I cannot prove that my flank pain is related to my ME, and in a way, I don’t know that saying the ME and the pain are related changes anything.  Except that it makes me feel better about it.  It gives me more hope.  Instead of dragons coming at me from both sides, I am only fighting one.  He may be black, as big as a mountain, and named Maur, but he is the only one.

I am hopeful that a cure for ME will be found.  And when that happens, I will be able to cut the dragon’s head off and be rid of both problems.  Until then, I will ride into battle each day… small battles, yes, but my enemy is strong.  I will chip away his armored scales one at a time until I win. 

And I will win.  We all will.

* * * * *

This would be a good time to remind everyone reading this about my CFS/ME fundraiser!  I’m donating 50% of profits from print sales and Introspective to the CFIDS, which you can also donate to directly if you would like 🙂

And, hey!  I think this is new since last time I posted here.  I made a short video to help spread the word about the fundraiser.  You can view it here, and please feel free to spread the word about this in any way you wish!

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As I talked about in my last post, I have big problems with chronic fatigue and pain.  The pain has gotten much easier to deal with over the last few years, but ultimately, it is still an untamed beast, which means it may flare up at any point, for an undetermined severity and length of time.  The really bad flare ups are much less frequent these days, but last week I had one very bad day.

I have various medications and tricks to help treat it; heat, cold, stretching, being completely still, etc, but it usually comes down to pain medication.  The medication usually makes me quite nauseous if I try and do anything adventurous like sitting up while I’m on it, so a bad pain day usually involves me laying in bed for hours in a darkened room.  This can make for a really depressing day, but this one was turned around.  How?  Because of a little show called

Community; a perfect show.  Following the antics and misadventures of the group of friends making up the core cast makes any day great.  Geoff and I popped in first season DVD (which we had already seen, as a testament to how much we like the show) and had ourselves a marathon.  We’d watch an episode, rewatch it with the commentary on, move on to the next episode and repeat.  For hours and hours.  It was glorious.

To call the show clever and funny are horrendous understatements, but I don’t have appropriate words to describe it.  Sometimes Geoff and I are laughing so hard we have to pause the show, get the giggles out and then move on.  But it’s more than just hilarious; it has so much heart.  I wish the characters were real, I wish they were my friends, I wish I was a part of their study group.  They are so perfectly created and feel so real that sometimes I have to actually remind myself they’re fictional.  They are loveable, they try, they fail, they are flawed, they love, they are human.

I am terrified of what will happen next season with Dan Harmon, the show’s creator, very unjustly removed from the show.  I look on a season with Dan Harmon as somewhat like Calantha living with someone else.  Sure, they would try and feed and care for her, but they wouldn’t love and know her like I do.  They couldn’t.  (And how long would it take for them to figure out the huge variety of tricks involved with simply getting her to eat?)  I will watch with an open mind and a heart filled with hope, but it hardly seems possible for the show to continue on the same level of greatness with it’s heart removed.

But I hope it will remain the same show it’s always been, and continue to grow, shock, and delight.  I hope that it will still induce tears of joy, sadness and laughter all in the same episode.  I hope it will continue to push the boundaries of television.

And selfishly, I hope it will still be here to help ease me through the worst days of my illness.  It takes very strong medicine to lift you out of a pit of pain, and Community is one of the rare birds with the wings to do it.

Fingers hopefully crossed.

End Of Line. I don’t have any Community-inspired photos (yet) but this one was at least inspired by another show, Battlestar Galactica.

Pop pop!!

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