Sunday, August 30, 2009

Do people care what they put us through? Or do they even KNOW?

I'm angry tonight.....I'm just not sure at whom yet! Other people, or myself? What am I upset about? Being taken advantage of and on a regular basis.
If you have fibromyalgia, you KNOW there are just some things that you can't do EVER, some things you have to be feeling up to the task and some things you can do almost any time EXCEPT while you're in a flare. I don't think other people realize this.........regardless of how many times I explain it to them!
For instance, I cannot drive or ride long distances without having a lengthy break (preferably overnight) in between stops. My husband has practically forced me to take 2 4 hour trips, just 2 days apart from each other this week! We drove to the other state, took care of business (all day) and then drove back to our state. A 4 hour trip! That was thursday, then today he did it to me again, all so that he could tape a football game because our satellite is OUT! We could have spent the night and came back home the next morning, but he insisted on driving home each time the same night. I'm in so much pain right now, that i can barely stand it and I can't take any more meds for several hours.
Is it HIS fault that he did this to me......even though I explained how much it was taking out of me? Or is it MY fault because I let him?
It's a catch 22 situation. I can't rest at home while he is gone for 6-8 hours, traveling at night, all by himself. I worry too much! But then again, he didn't put a gun to my head and force me to go with him, although he did make it clear that he wanted me to go with him. Does he simply not believe me when I tell him what these trips do to me? Does he think I'm exaggerating? Surely not because I'll be in the bed for the next 3-4 days recouperating.
So maybe it is my fault. Maybe I'm just not strong enough against him? But I don't like letting him down. I do my best to please him in every way. I thought that's what husbands & wives do for each other?
It's easy for me to tell someone else to not put up with this type of treatment and even tell the spouse what they are causing for their wife/husband who is ill, But it's a little bit harder to tell your own spouse where you draw the line.
So who's fault is it? MINE or HIS???!!! and more importantly, What am I going to do about it?

Saturday, August 29, 2009

Hypersensitivity to noise is making me crazy

One of the many things I hate about fibromyalgia is the hypersensitity to noise. I've been having so many migraines over the past month and I'm pretty sure it is from the stress of the constant noise around here. Even if I don't let the noise irritate me, I can feel myself tensing up when one of the annoying noises starts again.

Take this very second for instance. I drug my papa-san chair out to the deck so I could sit and write and the minute I sat down the neighbor boy started playing his drum set. He lives two houses down but it is SO LOUD he may as well have it set up on the deck right next to me, even though I am using my noise cancelling headphones. I can feel something tensing up in my head and I feel sure another migraine is going to come on.  I could take my chair back in the house, but then I'd hear the base from my husband's radio down in the garage. There's no escape. I just want to scream.

I know people think I'm terrible for wanting my kids (and the neighbor kids) back in school so badly. But dealing with loud noise every waking moment is driving me over the edge. Kids are loud and I can't help it, the noise gets to me and fries my nerves.

I seriously wonder how I'm going to get through the next couple of weeks without having a heart attack, stroke, or nervous breakdown. I know the stress is taking a serious toll on my body and mind. I'm pretty sure stress is the cause of my migraines and the flare I've been dealing with.  I'm trying everything I can to relax but the constant barrage on my senses is making it impossible.

Do you suffer from hypersensitivity to noise? All the the time, or just when you're flaring? Have you found anything that helps you cope?

Saturday, August 22, 2009

It's the weekend...big whoopity do.

I'm just going to admit it right up front: this blog post is filled with self-pity. If you click off of it at this point, I won't blame you. I am feeling sorry for myself. You see, this is the third weekend in a row that I haven't felt well enough to do anything. Seriously, ANYTHING. Not even the simple things like run to the bookstore for a new book or pick up a few fall flowers to plant. And definitely not the things I really love to do like go to the beach or for a hike. My mind is way too foggy to drive and I'm in way too much pain to walk through a store or stand in a check out line. Even with pain meds it would be miserable and pointless.

I guess there are a couple of reasons why it's bothering me so much this time around. First of all, summer is quickly slipping away and we haven't done a whole lot of summery things yet. The kids will be back in school in two and a half weeks and our weekends will be spent preparing for the week ahead and going to little league games. Another aspect to this, is that I feel guilty for not doing more things with the kids during the summer. This is their childhood and I'm afraid they're not going to have many fond memories of fun summer days.

The second reason it's bothering me so much is because this flare is accompanied by the fog. It could be an enjoyable weekend spent at home if my mind were clear. I could do some writing, I could read a book, or something, anything. Instead, my mind is just drifting in this horrible fog. It's very distressing. I feel like my life is drifting away from me or that I'm a ghost observing my life from the outside looking in. It's weird. Disturbing. And not enjoyable. I find it so hard to believe that people takes drugs with the intention of feeling this way. I hate it. I want my mind back.

But I am not going to spend the whole weekend feeling sorry for myself. Instead, I'm going to spend the weekend caring for myself and trying to heal. My plans for the weekend include stretching, massaging, applying moist heat, and performing healing meditations.  All the pain I'm experiencing right now is caused by my myofascial trigger points so all this should help with the pain. The brain fog, well, that's another story. I don't know what to do about that. I guess while I'm sitting on the heating pad I can browse the internet looking for something that will help with it. If I find any useful suggestions, I'll be sure to share them.

Friday, August 21, 2009

I could be a weather person!

People laugh at me when I tell them, "It's going to rain today" or "We're definitely going to get some snow out of this storm". But they stop laughing when it comes true. It's like my body has a built in barometer or something. I've been like this since I was a teenager and it's all thanks to the fibromyalgia and arthritis. My body starts hurting days before a storm ever hits us and the pain intensifies as the weather does.
All in all, I hate this! I would really like to enjoy the bad weather along with the good weather, but my body just doesn't cooperate. I used to love to sit out in the rain when we would have a thunder storm. It was always such a peaceful time to me. And there's no better time to take a nap than when you can hear the rain hitting the roof and cascading down. But as of late, I'm just not able to enjoy the weather. My body just hurts too much, and from all types of weather.
If it's rainy or cold weather, my body aches like the worst toothache imaginable all over my body. If it's a particularly bad storm system coming in, my hips and back hurt to the extent that I can barely walk. I hate the summer time because the heat (90-100 degrees F) causes me terrible migraine headaches. And any type of electrical storm does the same thing. Any time we have bad lightening, I get a bad migraine. And it can last for as long as the storm system does!
But my body hates the winter because the cold, rain, snow, etc... causes such widespread body pain that I often am in bed for days at a time, huddled under my electric blanket.
Right now, it's the start of hurricane season which ushers in a flurry of activity in my body. Even though I will never see the hurricane, this far inland, and may not even see rain from it, my body "sensors" go off as if I'm in the eye of the storm. Yet for some reason, I usually feel my best when I'm on vacation at the beach. I have NO idea what that's about!
I remember when I was a little girl, my father would always talk about moving us to New Mexico. See he has RA and OA rather badly. He would always talk about moving out west where it's 'dry air' and warmer temperatures in the winter. I wonder if this would work for me. I realize that I probably would not be able to handle the migraine headaches because of the heat there, but I wonder how my body would react, or if it would at all. If anyone is reading this who lives out west, I'd love to hear how the weather there effects your arthritis and fibromyalgia.
Maybe one day I'll live some place where I'm not in such agony over nature, but for now I'm forcasting rain for the next 2 days........pain to follow!

Saturday, August 15, 2009

If you could change only one thing about YOUR fibromyalgia, What would it be and why?

Please participate in this questionnaire and invite others to do the same. I'm VERY interested with the answers we will receive.

"If you could change only one thing about YOUR fibromyalgia, What would it be and why?"

Friday, August 14, 2009

Under the Weather

When you have fibromyalgia, the phrase "under the weather" takes on a whole new meaning. Wet weather can make us feel bad, hot weather can make us feel bad, cold weather can make us feel bad and weather changes wreak havoc on our bodies.

I've been feeling "under the weather" for a few weeks now. First, we had record breaking heat. We had temperatures reach over a 100 degrees, which is practically unheard of here in western Washington. I had a headache all that week which I attributed to the air quality. But, my body felt fine. I had no aches or pains that week and I was grateful for that.

Then, we got some cloudy weather and it dropped into the 70's. My lymph glands, trigger points and tender points did not like this, even though I did. I started feeling achy, and kind of yucky, like I was coming down with something. My headache intensified. My lymph glands kept feeling weird, like the ones in your neck feel when you bite into a lemon. Every night, I was sure I would wake up with a cold the next morning but I never did.

This week, it turned rainy and temperatures dropped even more. That's when my trigger points and headache reached crisis level. The headache turned into a debilitating migraine that lasted several days. My trigger points got tighter and tighter, despite taking more muscle relaxers. My tender points got more and more tender, to the point where it hurt for anyone to touch me. And my lymph glands felt...sicker, I guess is how I would describe it.

And now? I'm in a really bad flare, complete with fibrofog, stiff, achy joints, tight knots in my muscles and random aching in various places. My throat is mildly sore and I feel like I'm going to get a cold.

Today is Friday and our high temp. was around 60 degrees. It's supposed to be 90 by Tuesday. Will I feel better? Or, will the changing temperature again make me feel even worse? Who knows!

Saturday, August 8, 2009

Thanking God for the small stuff!

So often I go through my life complaining about things instead of seeing how truely blessed I am. Please don't misunderstand, I'm not complaining about other people that complain, just myself! Somehow I just don't feel that it's very becoming to ME as a Christian. Oh, I have plenty to complain about. I surely don't have an easy life, but then again who does?
I complain because I don't feel well most every day of my life. Fibromyalgia for me brings unpleasantness in many packages. For example.....I'm always tired. And not just your usual, I need to take a nap tired......... No this is more like, I don't think I can walk from my bedroom to the living room without falling down kind of tired. If I do take a nap, it can last several hours. But then again that's probably caused by the fact that I don't sleep at night like most people. Not by choice, mind you. I'd love to actually go to bed and fall asleep sometime before midnight each night, but it just doesn't seem to be in the cards for me. I've slept in the recliner the last 3 nights because I couldn't go to sleep at all (even though I take a host of medications at bedtime, including a sleeping pill) and then when I did finally get tired enough to sleep, I was too tired to be able to walk to the bedroom. Of course it was already 6 am by that time.
I have constant body wide pain. An ache, if you will, much like that of the flu I suppose but extreme. The best way I can describe it is to imagine the WORST toothache you've ever had, all over your body at the same time. Then I additionally have throbbing pain and muscle spasms in varioius parts of my body. And worst of all, the migraine headaches. I have a headache every single day of my life, but of course some are worse than others. I'm lucky when it's just a dull headache. I'm crying when it's a migraine. It feels as if your head will explode. It even hurts my hair. After a bad migraine, my scalp will be sore for days. The sensitivity to noise, smells, lights that come along with it. The nausea that also accompanies it. It's a disaster!
Along with the pain issues I have other health problems such as IBS, Restless Leg Syndrome, Ankylosing Spondylosis, OsteoArthritis, PCOS, Panic attacks from Anxiety, Depression, Acid Reflux, Hiatal hernia, Ulcers.........................the list goes on and on.
Now I know you think I just told you that I didn't like complaining, but what I actually said was I don't like it that I complain. I love to complain and sometimes you just HAVE to vent. You have to let out your feelings sometimes or you'll just die from holding it all in. But something happened to me today that made me think, maybe if I spent a little more time being thankful, and a little less time complaining I wouldn't FEEL so bad all the time.
See for the last 1 1/2 weeks I've thought that I was pregnant again. I have one miracle daughter who is 5 1/2 yrs old and I Praise God for her. I'm so thankful that she is here with me and I wouldn't change anything about having her. My life would be void without her. But I don't have an easy life and things get complicated with a 5 yr old. I can't do things that other mothers can and I feel terrible about that. I'm on a host of medications that I wouldn't be able to take, if I were pregnant, not to mention the damage it could do to the baby already. I stay exhausted every single day of my life and what energy I have, I spend on my daughter and husband. If I were pregnant, my life just would cease to exist I think. I'm 41 yrs old. My daughter is just starting kindergarten and I'll finally, after 5 years, have a couple hours to myself every day during school. I can actually take a nap without feeling guilty or trying to corral my daughter into taking one with me (which never works!).
Don't get me wrong, if I had been pregnant, I would have still been a good mother, or as good as I could be, but for me that would be taking away what little quality time I have with my daughter now.
So when I got the call today telling me it was NEGATIVE, I was thrilled!!! I'd never been this happy except one other time in my life and that was when I'd gotten a similar call 6 years ago telling me I was pregnant. See, with my condition of PCOS it's virtually impossible for me to have children. That's why Tabitha is such a miracle. She wasn't supposed to be here. And now that I know it's just her for the rest of my life, I can actually plan a life with her. I still have plenty of things to complain about, but I realized that such a little thing, a negative pregnancy test, enabled me to enjoy life a little better, a little stronger, a little longer. God knew all along what I could and couldn't handle, but I think He let me go through this to appreciate what I have NOW. I too often take it for granted that I have time to play with my little girl. I take it for granted IF I take a nap. IF I spend time blowing bubbles outside with her. As I sit here with tears streaming down my cheeks, I'm hoping that I remember this the next time I'm hurting so bad I can't get out of bed, or can't go shopping because I'm too tired, or miss church to lay on the couch because I didn't have the energy or stamina to even get dressed that morning. Thank you God for not letting me be pregnant today. I even thank you for my illnesses because I know you have a plan and I'm not alone here, ever!
I just want to take a moment to. ............. THANK GOD FOR THE small STUFF!!
Teresa Steading

A helpful link and some choices....

I just read an interesting article that I wanted to share with you all. First, it talks about the FDA advisory committee's recommendation to eliminate acetaminophen combination painkillers. I'm thinking this could be bad news for many of us. I take Tramadol which is an acetaminophen combination drug. It doesn't work great but it takes the edge off my afternoon achyness without turning me into a zombie. I'd miss it.

Then it discusses natural ways for easing fibromyalgia pain. I was astounded by all the things Epsom salts can help with and I am going out to buy some tomorrow. You can read the article by clicking HERE.

My second reason for posting is a bit of housekeeping. As I'm sure you've noticed, I changed the template awhile back. I just chose this template as an experimental one and would like your help (both fellow authors and readers) in choosing a more permanent template. The problem with this one is that it doesn't say who posted the entry and I don't see a way to change that. Plus, the grey on pink may be a little hard to read? Personally, I'm happy with anything that has wide margins and doesn't have the text in boxes. I'm going to post a few links to blog templates below and I'd like you to tell me in the comments which ones you like. Just click on the words to view the template.

Here is a cute one, one with red, a pink one, black and pink one, a cheerful one, an ocean themed one, a red and black one, a flowery one, one that made me laugh, a purple one, or, if there are any other ones you see along the way just let me know.

Also, I realized that the day/time stamp should be in eastern time since two of you are on that side of the country.

I hope you are all feeling better than I am!

Posted by: Trisha