Saturday, September 27, 2003

Pff, last week was definitely not one of my better ones physically. I just can't understand what brings on such a major flare. If I could, I could prevent it.

Thursday was the worst day, I had to take Saskia to the dentist at 11am and therefore did not really work out. Christine and I went for a quick half hour walk, but, stupidly, I felt I was entitled to a day without serious exercise, but came to regret it. Frustrating, that I always really have to get my muscles working and heart pumping to receive the benefit of a workout.

At the dentist, I couldn't even stand. I felt myself getting annoyed at a little boy who was sitting in the only chair available for adults there. Of course I didn't say anything, but I had to bite my tongue. And that's just so not like me to feel upset with a little kid! But I was almost desperate.

The day only went downhill from there, I tried to take an hour's nap, but even that didn't do any good. Thank goodness Christine told me to take Saskia to dance and Katja to tutoring, because it is my job, or I'd have canceled both. And she was right, I have to make sure I at least get the kids to their after school activities, as it is for their health and benefit. But, oh boy, was it tempting to give in to the fatigue and mysery.

Thursday night was Back To School Night and I had Rick go alone. It really should be called "Let's pounce on parents to volunteer some more" night and I'm trying to scale back the volunteering, doctor's orders. But I'm the worst at saying no, so I'd rather hide. Cowardly, I know.

Yesterday was a much better day, thankfully and today isn't too bad either. Saskia had a birthday party at Build A Bear from 1 to 3pm. Very cute, they made a curly bunny (Saskia started out with a meltdown, because she wanted the pig, but all was well in the end, as she got to dress her bunny in Halloween clothes).

I tried to find some more jeans at the Gap, but they didn't have my size. I need Long and it seems like that is one of the most popular lengths. So I'm going to another mall tomorrow, as I really want more jeans.

Tonight we're getting a friend of Saskia's for a sleepover and Kai is prepping for his second sleepover in a row elsewhere. We're in prime sleepover season it seems!

Tuesday, September 23, 2003

I feel a whine coming on, when I really have no right to. But what is better than an internet journal for something like that. Firstly, I really have nothing to whine about, which I'm super well aware of.

However...the pain is getting to me! Ok, I admit it, I'm just going through the motions of living right now and feeling like a truck has hit me all along. And the frustrating part is: no one can tell! I don't like to complain (though I do so more online than in real life and interestingly, I get a lot more understanding online than in real life, hmmm), mainly, because I'm always afraid to be discarded as the one "who is always sick" and "who can never do anything".

On orders of the rheumatologist, I have been working hard to diminish my commitments, so I have energy for the kids and Rick when they get home from school and work. Last year, I did way too much during the day, leaving me exhausted by 3pm and not the mother and wife I want to be.

But, oh boy, is it ever hard! Once you're in the volunteering mill, the word "no" barely gets accepted and if it does, than grudgingly so. One person had the audacity to tell me that sitting in child sized chairs all afternoon handing out fund raiser gift wrap orders "would take my mind off things". Um, well, it would rather do the reverse as sitting is painful as is, let alone sitting in those torturous chairs!

And yesterday, a neighbor who had seen my webpage claimed "there is someone with too much time on her hands". WTF? That page has taken me 6 years to create! But she's envious of me, because I've finally had to hire a housekeeper two days a week to alleviate the big household tasks and she feels she can't afford one. And yes, it is a luxury, I'm well, well aware. I'm super lucky that we're well enough off to be able to afford it (which is something else: in Holland, people with fibromyalgia get subsidized household help). This is something I've kept at bay for years, thinking it was a waste of money and why can't I do it myself. But, humiliating as it is, the fact is: I can't do it all myself. And Rick got stuck with the brunt of it after work and it's not like he doesn't have a busy job. So this was the solution for our family to take away a stress we didn't need. Just because my neighbor has a second house and a boat and therefore can't afford household help doesn't mean she should be jealous of me. But then again, she doesn't see me when the pain is so bad I can't sit, lie or stand and Rick does and unfortunately so do the kids.

This is getting to be a long ramble, but I'm so sick of judgmentalness! My best friend, who also has fibromyalgia, was told by a neighbor (guy) on Sunday, that he wouldn't mind trading with her, so he could have an excuse to do nothing. EXCUSE ME??? Nothing??? Guess who's having his daughters over at her house playing almost every day and making a mess?

I've long been aware, that it's almost impossible to know what it's like to live with chronic pain and fatigue if you don't have it yourself. I understand that. There are many such occasions in life. But where in the h*** is the empathy?

Do I have to really walk with a limp or lay myself up in bed to be taken seriously? According to my rheumatologist I'm doing everything I can do to function as well as I can with this disease. I'm guessing people see me exercise and think, well it can't be that bad, if she can run and lift weights, but what they don't see is the pain I have to bite through every time I do.

I've been having very serious burning pain on the right side of my body, all the way from my neck to my heel. According to the rheumatologist all par for the course, but it's so exhausting, because I can't get away from it. Nothing really helps, not even the exercise, not any kind of painkiller and I've tried just about all.

I truly love my life, I see all the beauty in it: Rick's love, the kids' love, nature, the pets, but when the pain takes over, like today, I can't help but feeling worthless and yes, I admit it, a little depressed. I'm trying hard to not let it get me down, especially not in front of the kids, because I don't want them to remember a mother who was always in pain. But I can't always do it!

I just got very frustrated suddenly this afternoon. I had a bear of a night with the kids staying awake till 11pm, arguing, because they were afraid of the storm outside and we all slept in one room, since Rick is out of town. Then the stupid dog woke me up at 12:50am to go outside. I swear she never does this when Rick is home! Katja, who was sleeping next to me in bed, had to get up again for school at 6:20am and I get up with her, because she likes the company. So I'm beyond exhaustion and in so much pain, I couldn't even lay down for a nap because it hurts too much. And yet I still have to take Katja to tutoring, have 3 kids playing in my house with the necessary messes and have to feed them tonight. It all seems like monumental tasks! I hate my body!

Ok, pity party over. Somehow it feels wrong to write so much about this, without the disease, my life would be darn near perfect, so is it right for me to complain about that one part? Probably not, but it does feel good every once in a while, especially since I always downplay how I feel in real life.
Well, on to having too much time on my hands: working on the PTA website for the school.

Sunday, September 21, 2003

Wow, what a weekend. Ok, what a 4 day weekend is better put! We survived the storm fine, just 2 trees down, neither one touching the house, which had been my big fear. I was glad I prepared by getting extra flashlights, batteries, water and filling the bathtub, as we were without power for 26 hours (minimal compared to most of our neighbors!) and still can't drink the water until further notice.

The schools are starting two hours late tomorrow and Rick is going out of town, so life is returning to normal. I went around the neighborhood yesterday to record some of the damage on film and that can be seen here.

Today, we went to Great Falls, that too was quite a sight and also recorded on film here.

This was definitely the worst storm I have experienced in almost twenty years here and really my entire life!