Sunday, December 11, 2005

A Nest In Your Hair

"You cannot prevent the birds of sadness from passing over your head, but you can prevent them from making a nest in your hair."

-Chinese Proverb

As December 10th's go, yesterday wasn't the worst I have seen, in fact it was pretty much uneventful. Well, I mean nothing really unusual happened. Do you suppose that could be the curse in and of itself? Sigh. I am not in the best of moods as I type this entry. No, I am frustrated. Frustrated with myself, frustrated with AOL. Frustrated with learning the newly installed MSN which is now on my computer and will probably be our new ISP after I finish archiving Ellipsis. And oh yeah...I am frustrated with archiving Ellipsis. More then anything else, I am frustrated with the new diagnosis of Fibromyalgia.

I slept 8 full hours last night/morning, and woke up exhausted. I am not reaching that all important 4th stage of sleep. I try so hard to take care of myself, follow the doctor's instructions, but my joints are all swollen, my body aches so bad, my head hurts, I am hungry but don't have enough energy to fix meals for myself at times, so I just lie in bed or sit in a chair and let Elvis cuddle me to keep me warm. I am too young for this, too young to get as tired as I do. I went to Office Depot today, the first time I have driven alone in 3 weeks, and by the time I got home and had a salad, I couldn't take one more step. I was honestly too tired to lift the fork.

I feel bad even complaining, especially in light of the how brave so many in the land have been, while facing truly life threatening illnesses. I don't have a life threatening condition...but it certainly is life altering. I wanted to go and photograph something very special tonight...the Sausalito Lighted Yacht Parade. Tonight was the 17th year that the parade has taken place, and I couldn't go. Alan and I were going to leave when he came home from work, grab a quick bite and then head for Marin County. Nope.

Sigh. It frightens me that I was too tired to have gone. My camera is part of what helped me recover from Anhedonia. My camera is what helped me through the death of both of my parents. My camera is what has seen me through most of the painful moments in my life, and now...it is becoming difficult to plan on the wonderful day trips I pushed myself to take this year. If I had known then what I know now, I wouldn't have taken the first doctor's diagnosis as the absolutely only one available. I wouldn't have pushed myself to keep moving, because I thought it was Epstein-Barr and that is what you do with that condition, as opposed to Fibromyalgia, where that is the very worst thing you could do.

I don't know if I have the energy to learn MSN. I don't know if I have the energy to finish archiving Ellipsis. I know I can't judge everyday of the future as being like the last 24 hours. I refuse to feel sorry for myself, but at the same time...I do feel frustrated. I am going to shake things up a bit for myself today, I am going to sign off and make some Christmas cards to send out. I want to enjoy the holiday this year, it's very special to me this year. As frustrated and sad as I feel tonight, I am very aware of all the blessings I have been given this year. For one thing, I now have the proper diagnosis. :) Right?

-OndineMonet
"Marin County Autumn Sunset"
Marin Headlands
November, 2005
Early Evening

The small light in the center of the photo is the Point Bonita Lighthouse which sits on the cliffs of the Marin Headlands. To see the image larger, click on it and you will be redirected.

13 comments:

Karen Funk Blocher said...

First of all: that picture is absolutely breathtaking.

Second: as Madeleine L'Engle is fond of quoting, "Comparisons are odious." The fact that somebody else has cancer, MS, ALS or Globner's Disease has no bearing whatsoever on your very legitimate frustrations over your pain, your tiredness, and your limitations. This is another grief process thing, as I'm sure you know already. Don't feel guilty about your perfectly normal reactions to your situation.

It WILL get better. You will learn what you need to know, and you will learn to manage the disease, and you will NOT have to give up the things that matter most to you, such as photography. You will have to pace yourself and all that, and maybe right now you have to cut back drastically. But isn't part of this due to infections and swelling? If so, you should feel at least a bit better once the acute conditions get cleared up.

Hang in there. And for Heaven's sake, don't go looking for something terrible to associate with 12/10/05!

Karen

Tilly said...

Hi Carly,

Bloglines has not been updating me on hardly anyone!!

So very sorry to hear you're in so much pain and discomfort at the moment. It must be a torture to have so much creativity and yet feel lacking in the vital physical energy you need.

Hopefully, things will ease off a little. Make sure to take it easy and rest as much as possible.

Tilly x

DesLily said...

really sorry to hear that you are having such a bad time right now. I KNOW that all the stuff with moving your journal and whatnot sure hasn't helped. I feel much the same though i had it easier then you.. I still feel unsettled.

I hope that things will get better as with the proper diagnosis comes the proper care for it.. and that WILL help, give it a chance.

http://herethereandeverywhere2ndedition.blogspot.com/

Dave said...

As I have never suffered from the condition which afflicts you, or one even comparable, I don't want to do you the disrespect of offering you advice or consoloation that would sound trite. I can identify with your frustration of, as a previous commenter phrased it, having your creativity bound up and not being able to release it. I can identify with depression that bogs you down and won't let you catch your breath.

I've become a regular to your blog. I enjoy your posts, and your photography is amazing. The pictures touch and inspire me on a daily basis.

The most earnest thing I can say is that I prayed for you after reading this post. Please don't give up hope.

Chris said...

You have every right to feel frustrated, angry, sad, etc. Give yourself permission to do so. One day at a time. You'll have good days again. Pace yourself my friend. We're here for you!

Shelly said...

First, you just found out about the FM. My second-best friend and writing partner has had it for at least 25 years now. It takes time to adjust to something like this, so give yourself a break. Which leads to,
Second, take one day at a time. With everything til you get into a rhythm you can live/work with.

With Ellipses. Archive a bit at a time. Maybe go thru all the entries and pick the ones you can't bear to leave behind. Make a plan to do those first, one a day or every 2 days. Then decide about the others. I know it helps my friend to break things down into parts so she doesn't feel so overwhelmed. That might work for you, too. :)

V said...

Carly, I`m so sorry. I can only imagine the muscle pain & fatigue you are experiencing.

Aw, Carly, please take your time and follow the doctor`s advice. My prayers are with you!
V

Carly said...

Hello Dave

It's nice to meet you! :) I hope you will continue to leave me comments, I love hearing from folks and getting to know new people. :)

Always, Carly :)

sunflowerkat said...

{{{{{{{{BIG HUG}}}}}}} Carly...
I certainly know the healing power of getting lost in creative endeavors. I can imagine your frustration at not being able to pursue your passions.

When you have a bad day like this, you just have to give yourself permission to feel whatever it is you feel. It's part of taking care of yourself. And that's the most important thing right now...that you rest and take care. And even though there will be both good days and not so good days, I know you will learn to manage this.

moose be dreamin' said...

Hi dear ... I'm a few days behind getting around due to my vertigo issues and I can completely relate to your feelings. I had to drive home 36 miles tonight in after a significant dizzy spell with which I had to take medication which sometimes works well and other times makes me feel wobbly and tonight was a wobbly night. It was one hellacious trip I can assure you of that. I was told but not officially diagnosed with fibromyalgia about 5 year or more years ago. The SSRI I take helps but more importantly - and you may already do this - I put one of those nice cushy foam cone mats on top of my mattress. There are even better products one of which I think is called snugglebed or something of the sort. It's amazing the difference in how I feel in the morning and all day with that and lots of calcium, magnezium and zinc tablets. Truly makes a noticeable difference for me anyway.

I know how you are feeling and you situation is not different than other diagnosis in that you are genuinely incapacitated at times. I remember it well and with this dizziness I don't know from one minute to the next if I'm going to be 'normal ' or sideways ...

I had an MRI today and I had a mini meltdown and had to end it. I would have continued on but the day was not 'scheduled' for me to have the few seconds i requested.

I am claustophobic big time and I got scared ... I feel like a big baby and worse, i HAVE to go back and complete the scan on friday.

they're taking a brain and ear scan and will put dye in for good measure 10 minutes before the end.

a bit scary but i hope that i can find my 'happy place' and stay focused on it through the second go round.

I am sorry you missed the lights. I've seen a similar type Christmas celebration in our nearby town and it was a sight to behold. And COLD.

I hope you feel better more and more. YOU can win the war on fm.

Fight on... and when you're down, let our warmth toward you hold you over til your up and about again.

Aging stinks.

Steven said...

Sorry your feeling tired.
I have no idea about MSN. I know it's not AOL though and that not's saying much :-)

I *may* have an idea that might help with archiving Ellipsis. Bloglines keeps a cached copy of your entries. I'm not sure how far back it goes, but I know I subscribed sometime in early 2004. I can't find your AOL addy in bloglines though since I switched over to following you here. I know the old addy is still in bloglines. I'll keep looking as I think the cache is a 100 or more entries.

Phinney said...

Sorry I haven't been around, I've been sick. I know having the proper diagnosis is good for you, but still, the way you feel...phooey. I can't begin to think of moving/archiving old entries or figuring out a new ISP. I have trouble cleaning my living room to get ready for a Christmas tree. Not doing well here. I send you hugs. And love. xo Phinney <~~who is amused by the verif. word today: elibop.

moose be dreamin' said...

Fibromyalgia Resources
What fibromyalgia syndrome (FMS) is, where to find help, and how Cuddle Ewe™ Underquilts provide effective relief and restful, restorative sleep.

The bed cover thingy I told you about ... put cuddle ewe in search engine and there rest of this info is in the lower left corner ... if you care. Just found it and thought I'd pass it along.

Hope you are feeling better.

Hug yourself with this at night!