Life teaches, Love reveals

http://www.facebook.com/CfidsAngelBlogs

A smile

Strength is Happiness

Travel medicine June 2012

My doctor hypothesized early in my illness that warm weather would help me if I felt good enough to travel.  My husband had his summer airline second job by then, so we tested it with a trip to Hawaii and though I spent a lot of time in the room resting, she was absolutely right.  My turtle trips started last year, and I slipped in a very brief one this year (a couple of weeks ago.  My friend Jenny, in some of my turtle pictures last year, happened to be on Oahu the same days as us.  This first photo is the kids waiting in the ocean while I talked with Greg about flight options for getting back.

8:48 pm, October 22....my third recovery

Me dancing at Cheryl and Miguel's reception,
photographed by my daughter

At that moment, a wave of certainty washed over me.  One big, invigorating, epiphany-style, see clearly through the CFS-fog wave.

I have little moments like this from time to time, but three moments so far (including this one, at a random moment during Cheryl's wedding reception) have brought monumental waves of certainty that I will be okay.

The first was watching the sea turtles the day we first saw them this June in Waikiki and the second was watching them roll in the waves at the same spot in September.  These moments are gripping, like the rays coming down from the top of a fancy cathedral and falling into the hands or onto the faces of statues of angels and saints when you are a twelve year old being raised catholic, or focusing on a rare species you are dying to see and having it cross your path just then.

We're here.....Kids in Vegas Part 1 (video)

Sunday night we made it to Vegas.  The craziest part is how crazy it wasn't to get there.  We left our front porch at 11 am and were checking into our hotel by 5 pm.  Christopher cried when we landed because I mentioned that Vegas was in the desert and he didn't want to be in a desert for his birthday.  But now that he's seen the pool he is completely over it and back to being excited.

We packed what food we could and checked a regular sized suitcase and one of our carry ons instead of taking just carry ons.  In addition to saving money on food, it was nice to have less with us from plane to plane and it was nice to be able to protect my bridesmaids dress, which made it nicely to Vegas.

We signed up for a 30 minute time share schpiel in order to get 3 free lion king tickets and free breakfast.  It will save us at least $160 and let us see a show, which we would definitely not be able to do otherwise.

Dogs and humans in sickness and health

I was watching a Nova series on the evolution and domestication of dogs and they spoke about facial communication and the ability of dogs to interpret gestures and facial expressions.  Dogs read emotions, which any dog owner knows, but it is interesting that they use the right side of the face first to read cues.  Humans do, too.  We are left biased in our gaze, drawing us naturally to the right side of a persons face....leading us (and dogs) to use the right side of the face first for reading emotion.

This is particularly fascinating given that it is the right side of my fact that was paralyzed.  This makes me wonder if people in general have a harder time reading me still, given that there are subtle lag times and differences on that side of my face.  And I wonder if it affects how Sweetie reads me.  She seems to think I'm mad at her lately.

I have to correct Greg sometimes in his interpretations of what I'm feeling or whether or not I'm angry about something. I am tired still a lot and CFIDS does not enhance people's social grace, so I chalked it up to poor communication on my part, but i think its very possible that i've lost more than i thought on the bells side of my face.  So it makes sense that Sweetie's been confused over time.  She has been worried about me at all of the appropriate times, so I still feel like she reads me better than most people.

So I have been a little nervous lately that she has been hanging very, very close to me.  It's been making me nervous.  I am afraid that she knows that either she or I am sick.

Researchers are finding similar interactions between dog and owner as human mother and newborn.  They have been looking at oxytocin as playing the same role between dogs/owners as moms/nursing infants....oxytocin levels rise in the blood of dog and owner after periods of petting and play.

If you have a dog you are less likely to have a heart attack and 3 to 4 times more likely to survive one.  But dogs began increasing our odds of survival even more directly thousands of years ago, when we were still hunter gatherers, by making humans better hunters.  This makes a lot sense to me.  After we adopted Sweetie from a shelter, I was seeing the woods differently at work...seeing tracks differently, as if she were with me.  I think that in a addition to assisting us with logistics in terms of hunting and herding, they help us heighten and hone our senses.

Like humans, wolves were social animals that hunted in daylight, which was not the case for many other species, making domestication a fairly natural and mutually beneficial outcome.  It turns out that dogs may think more like humans than any other species, including chimps, according to a cognitive psychologist featured in the special who is researching the responses of chimps and dogs to gestures such as pointing.  Dogs cue into social cues very naturally, noticing things as subtle as the direction of our gaze.  We may have evolved our eyes (almond shape, different amounts of white on each side when our gaze shifts) specifically for social communication.


So it seems like the things missing in my face may be too subtle for me to ever notice, but it is very possible that Sweetie does.

My Double-Edged Spoons

I just a read a blog on Wellsphere about the spoon theory (a chronically ill woman’s now-famous description to a friend about living with limited reserves).  A rush of memories came back related to my own sharing of the spoon theory and some crazy twists and turns that followed in my story that probably differ from what most people experience when they share it.

After I was diagnosed with CFS, a childhood friend with MS told me to "watch my spoons".  It took me a while to finally ask her what that meant.  After reading it for the first time, I referenced it often to help describe to people what I was going through.

The only down side was sharing it at work.

CFIDS and Elegance ~ Me as a bridesmaid : )

Not only is the couple in this amazing picture a real, live, engaged couple, but this....is my amazing friend Cheryl and her fiance Miguel (who I can't wait to meet).

(This amazing photo is by Eric Gillet, from their wedding website, http://www.cherylymiguelwedding.com/bridegroom.html)

More Yoga ~ Less Pain

In my early months of CFIDS, yoga was too much for me.  This is certainly not comprehensible to people in full health.  But there it is (and here are some pre-CFIDS yoga photos from a Glacier backpacking trip in 2009).

An awesome sleep technician with fibromyalgia lent me a DVD she had been using to manage pain.  She warned me that it would not feel like much when I was able to do it, but to start slow, as it would be more for my body than it seemed.  She said 20 minutes made her sore for a week.  I couldn't grasp that until I tried it, and she was absolutely right.  Yoga was always calming for me pre-illness, especially in live classes, but it wasn't 'enough' for me if I were looking for a work out or trying to build strength.  But five minutes was indeed enough to make me sore.

I pulled my hip, because apparently I'm 70 years old now

So, I think its because of lack exercise, but until its better I won't be getting any.  I am planning for it to go away by tomorrow so I can get back to yoga.

When I saw a rheumatologist last year (CFIDS patients have no shortage of doctors in their lives) he told me I have hyperflexion (more elastin than collagen, causing my joints to all bend backwards).  He said I probably never noticed it becuase I had been very fit as I entered my twenties (as a wildland firefighter and avid backbacker/mt biker, etc.) and did not feel any of the pain I might have otherwise started to feel by my thrities.  He showed me how weird my joints are, but they are the only joints I have so I never really knew that was different.  I never had to worry about my knees locking, they just bend backwards.  Apparently its very common and only causes problems if/when people's muscle tone decreases because the joints rub together and you can end up with arthritic-type conditions.

No crash this week (last week of September after Kintal Lake)

It's been a great month in terms of health.  I traveled to Hawaii with Jenni (lots of turtle blogs posted about that trip), followed immediately by a camping trip to Bowman Lake in Glacier National Park, followed the next weekend by a Girl scouts camping trip to Apgar in Glacier, followed this past weekend by a camping trip to Kintla Lake in Glacier for my birthday.  Some of the trips are covered in more detail in my Montana Momma blog.  Following a couple of these trips I caught colds that clung on a couple of times.  Otherwise though I wouldn't say I had major crashes, especially considering the level of activity on some of these trips.  I'm pretty pleased.

Top among the activities that could have caused crashes was getting caught in a storm on Kintla Lake in the Canoe.  Prior to that the level of exertion was very doable, with Greg paddling a lot so I could take pictures.  As a rain storm blew in, the wind became quite intense.  Another canoe was having trouble getting back before we started heading in.  We had to paddle really hard to make it back.  Without CFIDS it would have been exhausting.  That happened Sunday and it is now Wednesday.  If I were going to crash, I think it would have happened by now.

More health all week

So, to recap, the week before last I was in Waikiki looking for turtles.  Last weekend I was in Glacier camping with my family.  Yesterday, I returned from a weekend Girlscout campout in another corner of Glacier (more pictures and detail in my outdoor blog).

I now have another round of work sludge (bread and roses blog) to contend with, which is impacting me, but I'm trying to cope as best I can.  These trips give me something to draw from for each round and they build me up as I see what I can do.  Being outside is very good for me.

The other leaders know my situation.  And I am happy to say, they understand.  They helped give me options that allowed me to rest and keep going without feeling guilty for what I wasn't doing.  I realized just now as I type that I didn't feel guilty for resting or for hiking less, I just appreciated all the help from other leaders.  We wouldn't have a troop otherwise.  And I'm very glad we do.

I chose to eat french toast even though I can't have dairy.  I felt it in my gut mid-day and it probably made me a little foggy, but I was already fighting a cold, so I couldn't really pick that out.  The french toast was covered with syrup into which ants had found their way....12 out of 24 people ate the syrup anyway (though most of us did take the ants out).

 I think campfire smoke impacted me both weekends, but this weekend was chilly and even wet, so I needed to spend time by the fire.  I love getting outside and seeing the things I can do, instead of being confined to my house having to face all things I'm not getting to do (primarily work).  The next photo is about how I felt and probably how I looked, followed by a picture of me trying to look awake.  The photo after that is the view I was enjoying at the time above Avalanche falls a bit upstream.

 

This was the first trip to Glacier for one of our girl scouts.  What's better than that?

More turtles!!!!!

Soooo happy! 

This was another amazing experience and a very, very good CFIDS day.  Packed a lot in, but made it all the way through a late dinner and drive back to Waiki.  Even snorkeled twice AFTER the turtles, so a very amazing day for health.  

This is the beach I've checked for turtles each trip (but hadn't yet seen them there), and I was just thinking I'd stop real quick, "just in case" then we'd move on to other beaches, but there they were.  It was very hot and fairly crowded, so it was not as relaxing as last time, but it was amazing to see them up close and the people were excited and mostly repectful to one another and the turtles.  It was incredibly invigorating, and the fact that I did so well the rest of the day just furthers my belief that they help me.  Now I think they may even give me super powers, for how much I was able to do afterward.

These videos are of the the third turtle I watched up close, with a tiny shot of the fourth, who came out of the water as I was leaving.  A teanager that started coming last year, but I didn't hear a name or gender.

The first was Hao'Okanaka, basking by a big rock.  People around him were the funniest, beginning with a frenchman scolding the crowd in his picture for being in his picture, but waving his arms wildly in front of everyone else's picture.  It was amusing.  And a woman standing next to the turtle who kept asking where it was, who was very amused when she realized she was next to it.

 

And there were many turtles in the water close to shore.

These next pictures are of Brutus.  His rope was expanded when the third turtle came out of the water (in the video above).  The volunteers were great at keeping the crowd back without squelching curiosity or excitement and people were mostly respectful of the turtles space.  Almost entirely.

It was fun to watch the third turtle come out of the water (just meaning the third while I was there).  The volunteer in the pictures was very nice and knowledgeable.  And professional...I say volunteer but I'm not actually sure.

 

Jenni is very patient...we've been friends for at least 26 years.

And this is the teenager that came out of the water as we were leaving.

Then we went snorkeling at a couple of north shore beaches and Jenni bought me an early birthday dinner at a great Thai place.

And before turtles, found awesome food, including a NON-dairy mocha cupcake!  I haven't had a cupcake in a really, really long time.  For the sugar, it was a CFIDS mistake that I got away with, happily, because it was pretty darn cool to be eating chocolate.

Yay!