Monthly Archives: August 2010

National Invisible Chronic Illness Awareness Week: Chronic Fatigue Syndrome

September 13-19 is National Invisible Chronic Illness Awareness Week. I love this. Invisible illnesses are a real part of many people’s lives, but so few people know about them. Because they are invisible, they are often considered shameful, and they are not talked about. Often, people assume it’s just a matter of “trying harder.” They’d never say a person in a wheelchair should “try harder” to walk, or that a person with Down’s Syndrome should “try harder” to think, but when there are no visible  markers people assume the illness can be more controlled. I’ll be participating in this meme several times. If you participate, please link up to your blog below in Mr. Linky below! (This is my first go with Mr. Linky, so tell me if it doesn’t work). *EDIT: Mr. Linky is not working, so I am removing him. Please put your links in the comments!* I’d love to read about other people’s journeys!

1. The illness I live with is: Chronic Fatigue Syndrome (CFS). This means I am abnormally fatigued all the time, and sometimes debilitatingly so, regardless of how I eat, sleep, exercise, etc. On a related note, I need more sleep than the average person. There is nothing that shows up in bloodwork, etc., that can explain this fatigue.
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: 2004 (at least)
4. The biggest adjustment I’ve had to make is: quitting my full-time job that I spent 4+ years preparing for and the work of which I loved. I couldn’t keep up the pace. It made me so exhausted to be on a fixed full-time schedule, without being able to take days off when the fatigue was too strong, without being able to take breaks when the fatigue hit hard, that I was only barely surviving. Due to the amount of sleep I needed and my commute I had about 2 hours every night to eat dinner/see my hubby/do anything for myself, and I was still not sleeping as much as I needed. All weekend I slept to catch back up. I could not do anything outside of surviving. Four months later, I’m still recovering from the fatigue I built up over the two years I was there.
5. Most people assume: that I just party too much, or that “everyone gets tired, you learn to deal with it.” Since everyone gets tired to a lesser degree, they assume I’m just being a drama queen about my fatigue.
6. The hardest part about mornings are: losing them so I can sleep enough. I’m a morning person, but I need so much sleep I rarely get the chance to get up and use it. I hate that I either lose my mornings or sacrifice the rest of my day.
7. My favorite medical TV show is: House. I love the sarcasm, even if the medicine is crazy.
8. A gadget I couldn’t live without is: my computer. It lets me do so much without having to build up the energy to leave home.
9. The hardest part about nights are: when the insomnia hits. I know I will not be able to function the next day without sleep, and that it’s a crapshoot even if I do get sleep. But you can’t force yourself to sleep.
10. Each day I take _1_ pills & vitamins. (No comments, please) I now take a multi-vitamin. There are no meds for CFS. Multi-vitamins don’t help, but I figure they can’t hurt.
11. Regarding alternative treatments I: don’t know of any, other than to pump myself full of supplements and hope it helps. I hate taking pills so much. I gag. And I’ve yet to find anything that helps. So why bother?
12. If I had to choose between an invisible illness or visible I would choose: visible. No doubt. See above. People believe you when your illness is visible.
13. Regarding working and career: I can choose between having a career and having anything else in my life. I hate it. Even saying that feels like weakness to me. I fought tooth and nail against leaving my job. Finally, I coudn’t keep going anymore. I was going to collapse. I miss it. A lot.
14. People would be surprised to know: I hate sleeping. It feels like a waste of my life. Spending half of your life unconscious is not a great thing. Most people are jealous of how much I “get to” sleep, or that I “get to” take naps now. I hate them. But it’s either take them, or spend that time and the rest of the day as a zombie.
Another surprise: I can have a horribly fatigue-y day, where I cannot string simple sentences together, and simply standing a few seconds is enough to exhaust me, after weeks of great sleep. The fatigue is not necessarily related to anything within my control. I can make it worse by not sleeping, but I can’t make it all-the-way better by sleeping.
15. The hardest thing to accept about my new reality has been: I cannot live the life I imagined I would. Being an engineer (or engineering student) was a huge part of my identity. I’m still trying to figure out who I am now that that possibility is basically gone. (Yes, there are million in one chances I could go back somehow to an inferior set up. Yes, I could find something in a less-appealing field. That is not what I want. I had what I want, and CFS kept me from keeping it.)
16. Something I never thought I could do with my illness that I did was: Nothing yet…since I’ve been diagnosed I have been surviving and recovering from that survival.
17. The commercials about my illness: There are none. Very few people have heard of CFS, and of them many don’t believe CFS exists.
18. Something I really miss doing since I was diagnosed is: not having to think about sleep. It is my biggest consideration in life. Every idea, every invitation, I consider with regards to if I will be able to balance my sleep around it. Related to that is my energy balance. I only have so much energy, and it is not enough to have a full day of activity, even on a good day. So any commitment has to be considered with respect to if I will still be able to get done what I need to.
19. It was really hard to have to give up: the freedom to just live without planning every action.
20. A new hobby I have taken up since my diagnosis is: blogging. Online support rocks.
21. If I could have one day of feeling normal again I would: Silly question. I do have individual days of feeling normal (2 in the last 2 years). It’s not individual days that kill. It’s the never-ending-ness of it.
22. My illness has taught me: how wonderful my hubby is. No matter how many people tell me it’s just weakness making me tired, or to get over it, he is always there to tell me it’s not my fault and support me in what I need.
23. Want to know a secret? One thing people say that gets under my skin is: “I used to need a lot of sleep, too. Then I learned how to function without it.” This is not what everyone goes through. Saying this just means that you don’t think there’s something actually wrong, and that I’m just weak.
24. But I love it when people: believe me. Just believe me. Don’t give me a doubtful look. Don’t pepper me with incredulous questions. Just believe me, and I will be so grateful. (Honestly curious questions are fine and appreciated)
25. My favorite motto, scripture, quote that gets me through tough times is: You are not weak!” from my hubby.
26. When someone is diagnosed I’d like to tell them: It is real. It does suck. You may have to reshape how you’ve thought about your life. But you can live with this!
27. Something that has surprised me about living with an illness is: how many people have no idea I’m sick, and seem to equate how much I do to how little I must be sick.
28. The nicest thing someone did for me when I wasn’t feeling well was: letting me sleep and doing what needed to be done for me.
29. I’m involved with Invisible Illness Week because: if these invisible illnesses are in the public mind, maybe we won’t find them so shameful anymore or view them as just weaknesses. We can’t accept something until we understand it!
30. The fact that you read this list makes me feel: Hopeful. That understanding will spread.

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Monday Minute!

I think this is my very first Monday Minute! I’m excited to play along :-D (I’m even more excited I have time to blog!)

Who was your high school Sweet Heart?

This sweet hubby of mine :-D That’s right, we started dating in high school. Barely. He had just graduated. I had one year to go. We’d known each other-ish for two years before that. I always hated that I was dating my HS sweetheart, because you know what people say about that, and I am obsessive about strangers’ opinions. But I wasn’t going to break up with him just because of that, when everything was going well! And five years later, I married him! And another two years after that (in a week!) all is still going so very, very well :-D

What is your favorite vegetable to eat?

Corn! Most definitely corn! If only I could get some good ears from my garden…

Though the zucchini bread I just made from fresh garden zucchini is awesome!!

Do you plan on dressing up for Halloween, if yes, what do you have in mind?

Not at the moment. I try to blend in. It’s hard when in costume :-P Last year we were all pirates. And by, “we were all” I mean me, the hubby, and Toby :-D He was adorable. This year, if he’s shaggy, he can be an ewok, since we’re always told he looks like one!

Are you a reality show junkie? If so, what is your guilty pleasure?

Kind of…it depends. I like the competition ones, like Design Star or Project Runway! I also enjoy Say Yes To The Dress…because it just makes me happy. Sometimes I’ll try other shows on those channels, but for the most part I could take or leave them. I have a lot more time in front of the TV now, so sometimes I’ll try them, but it’s more a “I want background TV” than “I must know what happens!”

What year did you graduate high school?

2004. I’m a baby. :-P

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Great weekend!

I had such a great weekend, and only more to come!

Thursday was my hubby’s halfie-birthday. His birthday is actually in February, but I was too sick/stressed/bat-shit-crazy to celebrate it then. That was a real wake-up call to me, because I’m a huge birthday person. Or I used to be. Now I’m doing way better, but still exhausted, so his birthday wasn’t too awesome. But he seemed to enjoy it. I took him out to a dinner of his choice on Friday, and we talked and had fun having a special evening out. It was wonderful!

You know, aside from the crazy waitress who completely messed up my hubby’s steak by putting a queso topping all over it and telling the chef to way undercook it. But that’s OK. We talked to the general manager of the place (NEVER done that before, but geeze! That wasn’t even all she did!) and then we got a free dessert. And I felt better. So all was well :-)

Then we went out on a surpise date my hubby had planned for weeks! He told me to block the date, and then wouldn’t tell me what we were doing. Which I’m good with :-D So I’d been wondering and wondering…and then we pulled into a movie theatre. Um…OK…what on earth…?

Guess what’s back in theatres? That I only saw once the first time around but really wanted to see again since I loved it and thought the graphics were incredible and most appreciable on the big screen? But I was too out of it to make it back during the months it was out the first time?

That’s right! Avatar!

And I had no idea it was back out. Until my hubby took me :-D

Oh my gosh, what a great movie. We watched the previews with the 3-D and I was getting worried…they were so clunky and obvious and in your face and really distracting with the 3-D. What if I just didn’t like 3-D most of the time?

Then Avatar started. And oh my heavens. Amazing. AMAZING. It is just so very, very subtle about it!

I know some people hate Avatar. The plot is like Pocahontas or a bunch of other movies. I don’t care. I love high fantasy. Have we heard the message before? Absolutely. Does that mean it’s any less valid? No. We, as a country, hate hearing about how other cultures have their own value, even when different than ours. It’s not a message we’re comfortable with. So we ridicule it as trite. But how does being trite make it less true?

Anyway. Great, great time. Very well acted. Gorgeous world. I could spend 3 hours just moving around the forest in 3-D.

And I learned that 3-D on a regular screen is waaaay better than 3-D in Imax :-)

Then came Saturday. I woke up and went and taught my classes. Then I came home. Exhausted. Knowing I’d be meeting up with the hubby to pull up the pain in the @$$ floors at my old training space in preparation for moving to my new one. Blah.

And the hubby put me to bed. And watched some Big Bang Theory with me. And then made me nap.

And then left and did all the work himself.

Damn, he’s amazing :-D

Then he came home, and we went to a Seattle Sounders game! Soccer! I love soccer! It is by far my favorite sport. Probably because you actually have to be athletic to play. Not just tall. Getting unhealthily overweight doesn’t help your game. And it’s more than just strength in your upper body. You have to be fit. And I love it! So fun to watch!

At my request we got tickets in the section that provides endless free food.

That’s right. Endless free food with every ticket!

In a normal sporting event, this’d be amazing! Because every 10 minutes I’m bored, and wandering away to get food is totally healthy something to do. We walked in and got food. And then went to our seats.

And then I didn’t want to leave until halftime. Because I was so sucked in. My hubby was delighted that I was actually having fun at a sporting event!

Here’s another thing that was great about where we were:

The lady's room. At halftime. Yes, all those doors are open. Amazing!

Yes, I totally took a picture of the bathroom. There was no one around to stare at me funny!

It was a great time!

And don’t worry. I loaded up on food at half. Gotta get my money’s worth! ;-)

Next weekend is our anniversary. Undisclosed getaway has been planned by hubby.

Can’t. Wait.

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I passed!!!!

Wahoo!!!!!!!!!!!!!!!!!

I passed the home visit! I get to bring the Parker man home!

Now I’m shopping for cat trees :-D

The only (real) decision left: Do I bring him home ASAP, given that I’ll be out of town the weekend of the 6th (2 wonderful years with my wonderful hubby!), or do I wait until after I get back and hope they don’t screw me? Decisions, decisions…

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Home Visit

My adoption home visit is tonight.

No, I am not adopting a human. I am adopting a cat.

Yes, the animal rescue is insane.

Been cleaning all yesterday afternoon and this afternoon. It is so nice to have the house clean…maybe I could consider keeping it this way! ;-)

Wish me luck!!

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Dear so & so: Doctors and Parker

It’s been awhile, but I’m participating in one of my favorite memes again! Working on Fridays at a place with no internet makes it hard :-) Let’s dive right in!

Dear OBGYN,

Thank you for being awesome. I’m sorry your morning was so stressful. Don’t worry about me, I didn’t mind laying on your table wearing nothing but a flimsy little gown using the stirrups as foot rests while you were called back to the woman who was having a baby. This is why I bring a book. Nor did I mind you getting paged back to her again during our appointment. It’s all good. Despite the craziness and stress, you managed to make me feel more listened-to and provide me with more answers and hope than any other doctor I’ve seen in a long time. No retiring, OK?

Much love,

your patient

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Dear garden,

Thank you for providing me with a freaking huge zucchini! Now if you could tell your plants to provide more female flowers I’ll happily help you get busy. But you gotta give me something to work with. All those poor male flowers are dying from disappointment, unfulfilled. I’d like some cantaloupe and watermelon, and I’d like more zucchini, please! Thanks!

your slave

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Dear cat rescue,

Please, please, please just make a decision on whether I can bring my kitty home. Or at least call and schedule my home visit. I turned in an application last Saturday. Tuesday you called for a phone interview, the first I’d heard about the progress (despite working with one of the main people). Wednesday I called back until I got you to have the phone interview. At the end you said that it sounded good, and that while you had another application mine looked good, was in first, and you knew me. Giving me hope. Again. You told me you wanted to schedule a home visit, and someone else would call me to set that up. And then…nothing. Today I mentioned to the girl I work with that I’m available to schedule the home visit. And she just said OK. So what is up??? If you’re going to deny me, fine. But please tell me. This living in limbo just waiting for you to contact me is killing me. I want to bring home my man, or start to get over him. The increase of hope is going to hurt.

Please tell me where we stand.

your desperate employee/potential adopter

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Dear Parker,

I love you, little man. I’m doing what I can to bring you home. Thanks for the awesome cuddles today. It was nice to just go and sit with you, without having to work to get you to play with Toby. You came and purred and cuddled, and then settled in at my feet. Purring. You’re awesome.

Hoping you have a home, soon, little man.

your mommy-to-be (hopefully)

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Dear therapist,

Thanks for being amazing. Seriously. I love good health care providers. They’re so rare. I’m not freaking out about the RIDICULOUS adoption process anymore. It will happen, or it won’t. But either way, they’re insane. Let’s not go on vacation alternating weeks anymore, mmk? I’m already hooked on our weekly talks.

your adoring patient

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That is all. Happy Friday, everyone!

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Delivery for Mrs. Mom?

I’m blogging from my phone! How exciting and high class! (Side note- my phone thinks “flogging” is a more appropriate word choice than “blogging.” This amuses me.)

Why am I reporting on location? Well, because I’m here for my annual date appointment with the lady-bits doctor! Woo hoo!

It has been a long road to get here. I ignored their reminder card back in April and didn’t schedule anything. In June, when my drugs ran out, I realized I really DID need an appointment. So I called and scheduled…and the soonest they had was August. Ok…I’ll just put that on my calenOH LOOK SHINY! Needless to say, it never got written down.

Yesterday I call, because I thought I had an appointment in August, do they have record. Why yes! I have an appointment in about 16 hours! Oh…um…sweet. Glad I called, since they had the wrong number on file.

Next came a call to my manager, to give her no notice I’d be in late. Good thing she’s laid back. Hey, it took months to get an appointment, I’m not rescheduling!

Then I realized my gift from Aunt Flo might interfere. I called to check…they said maybe, but come in anyway and they’d try. (They didn’t want to reschedule either!)

So I wake up. And go downtown. And fill out the paperwork.

And find out my doc is at a delivery. As in a birth. Those are quick, right?

I don’t think the fates want me to have this appointment!

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