Turn Up the Music!

I can remember when I was a teenager blasting music as loud as I could to tune the world out. It worked then and it works now. If I turn the music up to just the right decibel I swear it makes everything in the world seem juuussstttt fine. I remember waiting until my parents would leave the house and turning the stereo up REALLY loud, closing my eyes and just laying on the floor or writing in my journal or chillaxin’…

These days I have to remember, I’m the parent now. I’m the one who’s supposed to be saying “TURN THAT MUSIC DOWN!!!”. Sometimes, like right now, I want to turn the music up so loud the roads shake and the cars jump up and down. I want this damn pain to go away. I am so very tired. I am so frustrated. This pain makes everything so much harder. I hate that people feel bad for me. I never know what to say when my friends ask how I’m doing… I mean, I know I’m not doing fine, but I don’t want to sound like Wendy Whiner so I say “I’m alright”.  Sometimes I just want to say “I feel like shit, I feel like I just got a ‘beat in’ initiation into a gang… the fibro gang. What a fucked up gang that would be. I feel like I’m black and blue all over. I feel like my bones are broken. You can’t see any of this on the outside. I can feel it though. This fibro shit is crazy. I gotta tell you… you gotta have faith in your God to get through this shit. Excuse my language. I’m a little out of control tonight. Just feel the need to vent a little.

It’s difficult to keep all the things in life balanced and working. Life. Marriage. Work. Family. Personal. Health. Throw these things up in the air… which one do you catch first and which ones get dropped? I tell you, I roll out of bed in the morning and start working and I probably work a good 10-12 hours a day these days. I am actually pretty darn focused. Would I actually “catch” work though or would it fall slowly to the floor… interesting question. Scary proposition. Is it possible to catch all of them? It is impossible to multi-task, so something has to give. One can only focus on one thing at a time. Given there’s only 24 hours in a day (now you understand why most of my posts go out after midnight!) if 10-12 are spent working, 5-6 are sleeping, there’s roughly 6 hours left to focus on everything else. Hmmmmmmm. I better take a look at my Maintenance Plan I came up with from my Level II Pain class. I definitely have a problem of “pacing” myself. I can’t seem to work just a “little” bit.

I think I better turn up the music and think about this for a while…

Thank you so much for reading and please leave me a note. I love to hear from you!

Stay cool!

You are responsible for your happiness and your health

I had a breakthrough today… I believe that’s what it’s called. It’s personal so I won’t share it with all of you, but I felt I needed to just put it out there. Why say it at all? It was a big day for me, I wanted to mark the day as a historic moment in time. March 2nd, 2010. Done.

This life is a trip. No matter what happens good or bad, the sun still comes up in the morning and goes down at night… and let’s be honest NOONE wants that to change, right? Drama happens in everyone’s “world”, but do you ever stop and look around? Do you ever really stop and just take a good look around? I, personally, can’t take my life too seriously. I would be a real basket case if I did. I used to take my life too seriously and trust me… ALL I THOUGHT ABOUT WAS TRAGEDY.  (I bet you wish you were my friend in those days!) I was Ms. Negative about everything. I try really hard to think positive about things. I may not get it right all the time, but I do try.

Look around these days… earthquake in Haiti, earthquake in Chile, homeless people everywhere you look, you must know countless people looking for jobs, friends who have lost their spouses/children/parents… these are rough times people!! Why do you think we have chronic pain?? It is not a coincidence!!

You need to look at your life and figure out if there is a link between how you live your life and your pain.

  • Do you hang out with positive or negative people?
  • Do you have a positive or negative outlook on life?
  • Do you believe you will get better?
  • Do you believe you can be happy?

You are responsible for your happiness and your health. You have to make life choices toward happiness and good health. I have to do the same. Trust me, it’s not easy. There are days I prefer to stick my head in the sand and stay in the dark… but those are the days I need my husband to push me to get up and come outside and play.

What I’m trying to say is… your attitude about life plays a big role on how you feel and your pain level. We have so much pain already, anything that will reduce our pain … well … it helps, right?

Thanks for reading! Look forward to your comments… stay cool!

Fibromyalgia and Doing “IT ALL”… What Do You Think?

Okay… here’s the thing. I’m just going to say it. I don’t get how people with chronic pain manage to do “IT ALL”. I am sitting in the kitchen that I made a mess; because I don’t want to sit at the desk that I left a mess; because I don’t want to sit in my bedroom that I left a mess. Honestly, there are not that many rooms left in the house. My son’s room smells like something or God forbid someone died in. My daughter has friends jumping around, hopefully not breaking the furniture in her room, and it is extremely loud in there so I wouldn’t be able to concentrate. My one sanctuary room, “the living room” in a very deep booming voice), I kind of have not allowed myself to go in so I don’t ruin it… you know the room I’m talking about. When you were growing up, it was the room that had the plastic covered furniture in it. The room no one was allowed to actually enjoy themselves in. Only grown ups were allowed in there, and only on special occasions. Sooooooo, when I grow up, I will let myself go in there! Until then, it’s just for special occasions… and I haven’t yet forced the plastic over the furniture… don’t push me, I might just go there! (if I was reading this out loud to you I would say “

Back to my topic… I can’t even stay on topic, much less do “IT ALL”, which of course IS my topic! whew! This is starting to confuse me (which as you know is not too difficult to do…). So! Since the holidays, I have had one hell of a time finding time to

  • tweet,
  • blog,
  • work my full-time+ job,
  • eat right,
  • spend time with my family,
  • exercise/ do my physical therapy,
  • read,
  • research fibro,
  • spend time with God (which should be #1),
  • spend time with family/ friends
  • paper craft

Obviously the must do’s always get done because they have to. Once prioritized, I thought it looked like this:

  1. work

Then I sat here for a while… and I decided I would rearrange things a bit. One priority just sucks… and it’s selfish and stupid, not to mention it’s not much of a life and I refuse to make that my life (did you say that in one breath?)! At one point in my life, that is actually how I lived… yes, I know, it is very sad, but true. I refuse to let that be the case now!

So, here’s what I will work on… AGAIN (because I keep forgetting and hopefully this time I will pay attention!): IN THIS ORDER…

  1. God
  2. My health
  3. My family
  4. My job
  5. My papercrafting

In between those things, I will tweet and blog. I will do my best and I will accept I can’t do it all. If I’m successful, I will get less and less of those looks from my husband where he’s shaking his head like I’m crazy because I’ve just taken on the world. If I’m successful… I. Will. Be. Content. Because I am content, I will have less flare ups… you see? I do get “IT”, I just have to accept that I am not Wonder Woman and I can’t do “IT ALL”. Those are two totally different things. But seriously, if I was Wonder Woman… I would totally dig that plane she had.

What do you think?

Thanks for reading. Stay cool!

do you have my christmas spirit? can i have it back now?

what does christmas mean to all of you out there? when i was growing up i could not wait for thanksgiving because it meant christmas was right around the corner! it’s so strange for me, it’s as if the holidays don’t even happen these days. it’s really sad to me… so my question is, did my parents create the holiday spirit when i was growing up? if so, i gotta say, they did a hell of a job! my mom created a family environment where we put the ornaments on the tree together (unless i’m smokin’ dope and that’s not what happened… and i know i’m not smokin’ dope because i don’t have that medical marijuana card!)… maybe not all of us, but my middle brother and i did put the ornaments on the tree with my mom. okay so not the whole family but the three of us did this together. oh yeah, and yes we complained. but! we did put the ornaments on and i remember loving it… i loved the feeling of accomplishment when we were done.

i’m a grown up now (at least i like to think i am at times) and my mother passed the ornaments down to me. these are very special ornaments too. we made a lot of them growing up… my mom made a lot of them when we were growing up… she put a lot of love and care into these ornaments, how could i possibly let a christmas go by without putting them on the tree? she will want to see them when she comes over on christmas.

yes, this is my problem. i have not had christmas spirit for the past few years… i wish i could find it. i think it has been misplaced. if you have it, please send it back to me… i really miss it…

i should have put a warning at the top of my post “this may depress you”… that was honestly not my intent, i was just sitting here thinking as i was finishing up for the night (i am doing the normal christmas project craziness)… i’m going to go put some ornaments on my christmas tree now. i want you to go watch something funny now… or better yet, go read http://thebloggess.com/ she will make you laugh your ass off and i will have made up for depressing you…

Happy holidays!

thanks for reading! and really, stay cool!

Letter to people that don’t have Fibromyalgia (FMS) and/or MPS (Myofascial Pain Syndrome)

"Thank You!"

i have been writing this blog for just over a month now and, first of all, thank you! this blog has helped me through some very tough times. i had no idea that doing this would help as much as it has. 99% of my writing is done in the middle of the night when most sane people are sleeping. consider that i have insomnia during a flare up, i spend a lot of time reading and writing when i can’t sleep (in between facebook games, of course!).

through one of the blogs that i follow, i ran across this letter that i just love. it says it all. it’s a bit blunt, but it’s right on point… most important, i feel this way… except i am open to suggestions.

thanks to my newfound blogger/ twitter friend Sassy Nurse for sharing this with us:

Letter to people that don’t have Fibromyalgia (FMS) and/ or MPS (Myofascial Pain Syndrome): By Billie Chainey

These are the things that I would like you to understand about me before you judge me…

Please understand that being sick doesn’t mean I’m not still a human being.
I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”.
When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time; in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy.

Please understand that being able to stand up for ten minutes, doesn’t necessarily mean that I can stand up for twenty minutes, or an hour.
And, just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “being sociable” and so on … it applies to everything.
That’s what FMS/ MPS does to you. Please understand that FMS/ MPS is variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen.

Please don’t attack me when I’m ill by saying, “But you did it before!”
If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse.
Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes, take this pill/ supplement… may frustrate me to tears, and is not correct… if I was capable of doing these things, don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.

Another statement that hurts is, “You just need to push yourself more, exercise harder…”
Obviously FMS /MPS deals directly with muscles, and because our muscles don’t repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS/ MPS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!) but it is not created by depression.

Please understand that if I say I have to sit down/ lie down/ take these pills now, that I do have to do it right now –
it can’t be put off or forgotten just because I’m out for the day (or whatever). FMS/ MPS does not forgive.

If you want to suggest a cure to me, don’t.
It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well.
It’s because I have had almost every single one of my friends suggest one at one point or another.
At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there were something that cured, or even helped, all people with FMS/ MPS then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/ MPS, and if something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and discuss it with my doctor.

In many ways I depend on you… people who are not sick…
I need you to visit me when I am too sick to go out…
Sometimes I need you help me with the shopping, cooking or cleaning…
I may need you to take me to the doctor, or to the physical therapist…
I need you on a different level too… you’re my link to the outside world…
If you don’t come to visit me then I might not get to see you…

And, as much as it’s possible, I need you to understand me…

I would also like to add a personal note to this that isn’t listed above that would be a tremendous help emotionally.

Please don’t make my disease about you… .or say things that make me feel like I let you down. Things like, “Oh, I was hoping you were better today.” make me feel guilty and that I have somehow disappointed you. I understand this disease effects everyone involved, but the last thing we, as the sick ones, want is to burden anyone. We have plenty of guilt for being so dependent on others as it is, we don’t want to feel like we’re disappointing you or making you feel bad by saying that we don’t feel good. We don’t expect you to say anything about us feeling bad as a matter of fact. Just be there… hold us when we need to cry from the pain or frustration of being so limited. We know you care… otherwise you wouldn’t come around or even ask how we’re doing, but please don’t make us responsible for your emotions too. When the bad days hit… we’re doing our best to deal with our own.

If you must say something it’s ok to say you’re sorry for what we go through.. but please don’t make us feel like we’ve killed your hope.  You are our source of encouragement.

i have faith. i will overcome this disability!

I am disabled.

Wow.

I am a proud owner of a handicap placard.

Woot! Woot!

Is that how I am supposed to feel?

Yeah! I get preferred parking now when I go shopping! Hell yeah!

Let me tell you how it really goes down…

In the morning when I get up

this is how i feel…..

i wake up and

i feel tired and

in pain and

i slowly get out of bed after about 30 minutes (if i’m lucky) and

i get my laptop so i can work and

i sit down on my bed and

i start my work day and

my beautiful husband brings me coffee and toast and

i take my medication and

i drink my coffee and

i eat my toast and

by noon i am exhausted. i am already exhausted!!!

my brain can hardly focus and

i’m pretty damn frustrated because i know that it wasn’t that long ago that i was damn good at my job and seriously?

this fibro fog sucks!

i attempt to eat lunch, which these days ends up being my one real meal of the day after my toast and

then i attempt to work again and

i end up playing facebook games and

twittering and

now it’s dinner time and

i sit with the family and

i’m not hungry so we talk about our day and

after i go back to bed and

i attempt one more time to work and

again fibro fog and

again facebook games and

again twitter and

now it’s time for my night time meds and

i can’t sleep so i write my blog and

at the end of the day

this is

what i know for sure

regardless of anything else

i am blessed. i. am. blessed.

i am alive and

for today, i am able to work and

i have my family and friends to support me and

who believe in me and

i have faith.

i have faith that i will get better.

i will make myself a better person and

i will do my physical therapy and

i will eat healthy food and

i will educate people on fibromyalgia and

i will take my medication and

i will overcome this disability!

what else do i know?

if i can do this?

anyone can!

having the preferred parking ain’t what it’s cracked up to be… i’d rather walk the extra distance.