Wish me luck and please come visit!

The emotional issues surrounding Fibromyalgia have always been a bigger problem for me than the pain. I’ve always said that I could work through the pain. Knowing that there’s nothing physically causing the pain and that “babying” it won’t help, yeah, it just isn’t that big of an issue.

For instance, I used to have a coworker with Fibromyalgia. Her symptoms seem to be only pain related. She didn’t seem to have memory or cognitive issues. Instead she had ergonomically correct equipment installed at her cubicle (kudos to her…I couldn’t even manage to get a computer monitor that worked…but that’s another story) and lots of gadgets for her pain.

But the pain was always there and when you’re in pain, you tend to moan and groan occasionally. Think about the last time you worked out harder than you should have. Your muscles ached the next day (and the day after that!) and you groaned. It was like that for her. But she could still work and continues to do her job. I wish…

Me? I had narcotics to kill the pain, but there was nothing that would really help the emotional damage. The cognitive issues took over and fibrofog was a constant. My memory was shot and working cases was beyond me. I’m surprised I wasn’t more of a basket case than I was. It would be nice if anti-depressants worked for me. I’ve tried quite a few types, but have not met with success.

So here I am again. Feeling reduced to basket case status from the move to San Diego and the constant traveling. My visit up to see my kids a couple of weeks ago was a borderline disaster. It involved having a cry fest with my youngest while parked under a clothing rack in the mall. Seriously. But we muddled through it.

As I’ve mentioned before (I think) I’m a bit scared to write when I’m an emotional train wreck. That combined with my memory issues just seemed to be a recipe for getting myself into trouble.

But I’ve got things I want to say, so I’ll just get back on it. Maybe not my best work, but I’m getting back to work.

Anybody here heard of NaNoWriMo? It’s a contest (essentially with yourself) to write a novel of 50,000 words in one month. It starts today. I entered it last year…and flopped around like a fish out of water. I am participating again this year, but a little more prepared. I don’t know that I’ll hit the magic number of 50K but I will apply some chair glue and make an effort.

Between this blog and the novel I’ll keep busy enough to pull myself out of the funk. That’s the goal. Wish me luck!

Tags: NaNoWriMo

However, last week I went on a jaunt with da hubby since he had to travel for work (this job is right up there with his last one for travel.  But it might get better. I’ve got my fingers crossed) and while he was out working my face made significant contact with the hotel room wall.

I am uncertain as to how this occured as the ONLY thing I remember is laying on the floor with this really cute guy in fire fighting gear in my face asking me what my name was. Too early for Halloween and it’s been years since I’ve been in the dating scene.

I must have knocked myself silly. The only reason I’m mentioning this is because, as I said, it’s only been a week since that happened.

Nothing like going home to visit family and friends looking like someone got ahold of a sharpie and drew little halfmoons under my eyes. Attractive!

Anyhow, #1 son lost his job, oh gosh, about four months ago. He was working at Target. He has been unable to find another job, in part because it’s really outside of his comfort zone.

Pretty much everyone in his universe has been trying to help him find a job. I’ll leave it at that.

In the meantime he has to live, right? Pay expenses, go to movies, buy junk food at the local gas station and all that.  Oh and get a charger for his cell phone.

Just check out this post from the boy:  http://strangerhappenings.wordpress.com/2009/10/14/hmm-blog-related-and-personal/ I laughed so hard I snorted (which hurts because in order to have two black eyes, you must have hit your nose. I have that on good authority).

He is very creative when it comes to finding ways to make money as long as it doesn’t involve actual work.

Still managed to fly out to New York to hang out with my husband…but spent most of my time in bed.  Bummer.

One of the other problems I have with using WordPress is that I generally have to write the post in Word (don’t trust my spelling or grammar!), move it over to Notepad to strip it of any coding and then post it in WordPress.

And if I want to post any links or pictures I have to wait until I’ve already got it into WordPress before I can do that (just remembered that) so of course there is always last minute editing!

Not exactly as organic as writing an email and hitting “send”, is it? I’ve still managed to send emails, pissing off kids, relatives and real estate agents with abandon, but no posts even though I have LOTS to say.

I’m curious. How do you write your posts? I’ve been looking but can’t find a whole lot of info on it…so I figured I’d just ask. What flow works best for you?

When I was a kid, a really little kid, my mom married a guy who liked to fly. He was a postal carrier, but his true joy was flying. My mom made that happen and I grew up around airplanes. Small ones, Cessna 150s, 172s, Pipers, Grummans and all those little pip-squeak planes. The guy had quit his job and he and my mother had started a flying club, where people could lease planes or take flying lessons.

I logged quite a few hours in the air. Flew out to Wichita, Kansas from Santa Rosa, California and picked up a new airplane and flew back with him. Rattled every tooth in my head! Constant little joy rides up and down the California coast.

Every family vacation was done by airplane. Mendocino, Cloverdale (yeah, if you’ve been to Cloverdale you should be rolling your eyes right now!) Disneyland and just about every weekend we flew to The Nut Tree in Vacaville, California to have lunch.

And when I was a teenager, I made an amazing amount of money washing those airplanes. Ever tried to peel bug guts off your car? Try an airplane! I earned every cent.

So it’s understandable that Amelia Earhart was a very familiar name to me. That guy my mom married was pretty impressed with her. So when I heard a movie about her was coming out I was pretty nostalgic.

And then I heard about Grace McGuire. During my latest flare I watched a news broadcast about how  Grace McGuire, an Amelia Earhart look-alike, had purchased an identical aircraft to the one that Amelia flew and planned to fly around the world. Only she got held up by the TSA (Transportation Security Administration) corporate stupidity and bungling mechanics and…Lyme Disease.

Soon after Grace purchased the airplane in the early 80′s she developed what was later to be determined to be Lyme Disease and Multiple Sclerosis. After fighting with this disease for over ten years she is close to realizing her dream.

Can you even begin to imagine what she has gone through? She was at first treated by doctors who didn’t have a clue what they were doing (welcome to the club) and when she finally found a doctor that knew how to treat Lyme Disease, it took a very long time for her to become well enough to continue pursuing her dream.

There is so much to this story. Check out the links if you’re interested. But I am truly amazed by what she went through to get her plane to where it is now. And I know how ridiculously hard it is on a person’s body to fly long distances in a small airplane. Can’t imagine doing it with something like Lyme Disease or Fibromyalgia. But I want so much to cheer her on. Go Grace GO!

But read this first, okay?

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: fibromyalgia

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: 2005

4. The biggest adjustment I’ve had to make is: my reality needed a complete makeover.

5. Most people assume: that I couldn’t hack working or am really, really lazy

6. The hardest part about mornings are: the first breath in as you wake up, you just know it’s going to be a bad day when you wake up and every single pain alarm in your body is going off. Days like that, throwing in the towel now, thanks!

7. My favorite medical TV show is: well, if you count Bones as a medical show. Just started watching it about five days ago. I only watch TV when I flare and it seems like TNT was having a Bones marathon…

8. A gadget I couldn’t live without is: oh, I probably could live without it but I really like it; my iPhone. It’s nice that it has a GPS system that can actually help me find my way out of a paper bag. I know that “total loss of direction” is NOT a listed fibromyalgia symptom but in my book it should be!

9. The hardest part about nights are: it’s a toss up between really trying hard to relax enough to go to sleep (who knew it’d be so hard to relax!) and waking up at 1am and knowing you are done sleeping for the night.

10. Each day I take 12 pills & vitamins.

11. Regarding alternative treatments I: have tried a whole lot of them…but am willing to try some more if they look promising. Whatever works!

12. If I had to choose between an invisible illness or visible I would choose: neither. Yes, my reality is taking it’s own sweet time adjusting…

13. Regarding working and career: an accountant with short-term memory loss working thirty cases in rotation…nope don’t see that happening. Blogging seems to be more my style at this moment. I can usually remember what I’m thinking in one sentence or paragraph. Any more than that…it can get interesting.

14. People would be surprised to know: I can smile. Few have seen it. I even show teeth occasionally.

15. The hardest thing to accept about my new reality has been: accepting my new reality! I notice that the longer this goes on, the fewer “good days” I have. That is chilling.

16. Something I never thought I could do with my illness that I did was: I found that I can travel with my husband. He travels lots! I pay for it, but it is so worth it because we have a lot of fun together.

17. The commercials about my illness: are incredibly stupid. How many people are actually helped by Lyrica? And how many are lugging around an extra 40 pounds because of it? The actresses are incredibly helped and incredibly thin. Oh please.

18. Something I really miss doing since I was diagnosed is: I miss not worrying about if I am going to be able to keep scheduled appointments. It really sucks when I have to be a flake and bail because I can’t get the brain in gear.

19. It was really hard to have to give up: working; at the end I really hated the job, but it was something that I’d worked hard for and it really hurt to give it up.

20. A new hobby I have taken up since my diagnosis is: blogging. kind of a silly answer because if you’re reading this, you already know.  When I find a new hobby I’ll tell you about it.

21. If I could have one day of feeling normal again I would: well…okay, how do I say this? How about…That would be between my husband and me and yes, it would take the entire day.

22. My illness has taught me: to know that the world isn’t going to end today just because my body is overwhelmed with pain and my brain refuses to work. Eventually I’ll get some kind of equilibrium…just give it some time.

23. Want to know a secret? One thing people say that gets under my skin is: Oh my sister said this and it made me want to stick a bunch of clothespins on her (with super glue) and say it right back to her “Can’t you just shake it off?” My sister, of all people! Sorry, haven’t found peace on that one.

24. But I love it when people: I love the way my MommaJan (my husband’s mom; she’s my favorite mom-in-law ever! Let me rephrase that…I love and admire her. We’ll leave it at that.) just finds a way to say something positive…and I’m pretty sure she’s never wanted to stick clothes pins on her sister.

25. My favorite motto, scripture, quote that gets me through tough times is: “When all you can do is all you can do, then all you can do is enough.” I heard that phrase while I was in college (working full-time, going to school full-time and lots of kids at home) and it has stuck with me. It really works for me now!

26. When someone is diagnosed I’d like to tell them: DON’T BUY SNAKE OIL! And just because a doctor prescribes it doesn’t mean it isn’t snake oil. Investigate everything…the Internet is a beautiful thing; a very useful research tool–use it! And get on the chronic pain and fibromyalgia forums…talk to people. You aren’t alone.

27. Something that has surprised me about living with an illness is: I have to walk with a hitch in my giddy-up when I use my blue handicapped placard even if I’m not feeling a hitch in my giddy-up because I’m tired of mean ol’ in-you-business people telling me off about I’m using that placard illegally.

Of course those “saints” don’t stick around for me to pull my “got a right to it” card or my explanation. Using a limp is a chicken’s way out. Yep, that’s me. Don’t have the energy to waste on that stuff. Get a life people!

28. The nicest thing someone did for me when I wasn’t feeling well was: the last five days I have felt like absolute pond scum…no, worse than pond scum. Algae? And my husband happily sat down and watched TV with me while I was pretty much confined to the couch. He loves to get out and about, but he’s lots like his Mom…he’s just so beautifully positive. Wish it would rub off!

29. I’m involved with Invisible Illness Week because: Wouldn’t it be a wonderful thing if I didn’t have to fake a limp when I use my handicap placard? Not all handicaps are visible…right up to the point I collapse and then it gets real visible.

30. The fact that you read this list makes me feel: Well, if you’re my sister, I’m scared. Anybody else, thank you so much, I appreciate your interest.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

And now I”m on Paxil because for two weeks previous I’d been crying my eyes out over family problems…and I normally don’t cry unless it’s really bad. It’s NOT really bad, just just my oldest daughter’s usual stunts. But still I was constantly crying and going further and further in a downward spiral. My social anxiety is at an all time high. Don’t think I’ll be making it to the support group meeting today. That sucks.

And now, for whatever reason all my energy has got up and walked out the door without me. Pretty weird and I don’t know why… it could be from titrating down off the opioids and titrating up on the Paxil (I’m no dummy–I’m starting out at 5mgs on the Paxil! I have the strangest reactions to drugs.).

I started back up on all the vitamins and supplements that I tend to ignore when I don’t feel so bad. My husband told me I just need to get some exercise. Yeah…I’ll get right on that as soon as my energy decides to waltz back in the door!

So that’s my excuse…well, most of it. Hoping I get back to being me soon because this sucks. And blows. That’s a visual

Pick myself up, dust myself off and start all over again. I hate meltdowns. But again, it is one big huge band-aid being ripped off. The pain is so much and so overwhelming that I’ve got to do something with it. I don’t always make the best choices. Right now the ratio is not in my favor.

I never had any intention of making this blog all sweetness and light. I intend to share the things that work best for me and discuss things that might help. I want to talk about things that we need to pay attention to…like health care reform. And I really wanted to laugh about my foibles. I am a comic at heart. But that has not been coming across, not at all.

I pulled off the really painful family stuff. There’s no point in it. It’s like watching a traffic accident. Some families are like that. I will make no apologies except for posting unhelpful, unfunny stuff. Sorry ‘bout that.

 Somehow I will find my voice here. The one that is irreverent and comic…and hopefully useful.

I finally got a haircut! It was getting shaggy and long for me. Okay so it was barely touching my ears.

I really don’t know how people with long hair do it. Fibro and long hair? I’d have a crew cut if I thought I could pull it off. Remember Susan Powter? You know big brash mouth, really short hair? The image kind of suits me.

Right now I have a “wash and go” hairstyle.  When I first developed fibromyalgia my hair was longer and required styling. This became an issue because I was usually too worn out after taking a shower to do much about it. If you have fibro you know exactly what I’m talking about. And going to work in a professional office place with wet hair and no makeup? That doesn’t go over really well.

After I whacked my hair off it was easier to take care of. But have you ever noticed that once you fix one problem with fibromyalgia (be it sleep or hair) another one pops up?

And so it became harder and harder to get up and take a shower in the morning. I used to get up every morning, hop in the shower, grab some breakfast and out the door to work. After the symptoms developed it wasn’t so easy. Much harder.

Waking up was painful, so I’d set the alarm for half an hour earlier and take my pills. Then when I’d get up I’d be semi-functioning.

Another adjustment we tried was having my husband started making me breakfast first so I’d have a chance to get my act together before taking a shower. Is he not the sweetest man? And sometimes that, with half a pot of coffee, would  work.

Taking a shower was incredibly hard. (Try explaining that to someone who doesn’t have fibro!) It made me crazy that I could never remember if I’d already shampooed my hair or not…and even worse, was I supposed to shampoo or condition first? Which scrubby was mine? Know what I’m talking about?!! How can I not know how to do something I’ve done all my life without ever even having to think about it?

I’d already developed some habits to overcome my leaky memory…for instance I learned to make sticky notes for things I was constantly forgetting. But I was pretty sure a sticky note in the shower was not going to work.

These tips from CFIDS and Fibromyalgia Self-Help for overcoming fibrofog didn’t really work for remembering to shampoo first. I kept trying various things to try to focus and finish the whole job of showering. I even tried talking to myself. “First I shampoo, first shampoo, first shampoo” until even the words didn’t make sense and then I’d give up and end up in a heap in the shower.

In retrospect…what would have been wrong with taking a shower at night? NOW I think of that.  Showering wasn’t the worst of my cognitive difficulties…I eventually had to resign from work. I was an accountant. If I couldn’t think my way through a shower do you think I could think my way through a work day?

It took a couple of months after resigning from my job for the shower fibrofog to calm down. But while I was working it seemed like taking a shower was such a huge hurdle to overcome. Even now it can be a big chore because it expends so much energy.

Some days I take it in steps:

• Undress
• Lay down
• Turn on the water (argh, we’re having a drought!)
• Lay down
• Get up and take the plunge…hopefully the water is warm enough. I have a sitting space in my shower. I make good use of it!
• Proceed at a steady pace: shower, shampoo, conditioner, soap and then out.

 I have a very water absorbent bathrobe (okay I have many bathrobes. They’re a wardrobe staple for me), so on the days the energy level makes drying off seem like a monumental chore, I just put the bathrobe on, put a towel around my head and go lay back down.

By the time I have enough energy to get back up I’m usually dry. And if I’m having a “bathrobe” day it’s back into the pajamas, brush my teeth and I’m good to go for the day.

And that’s one more way I’ve learned to adapt to fibromyalgia. If you have anything you’d like to share, I’d enjoy reading your comment!