exhaustion

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I am Flare Free!!! This and my Journey with Fibromyalgia the Last Few Weeks

I have to tell you… I have started this post and others many times. It is now May 16th and I am happy to say that I am flare free. Did you hear me??? FLARE FREE!!! Uh-uh. No. Don’t just read that sentence like it’s nothing. Read it again… Say it out loud with me. Wait a minute, Let me make it easier for you:

I   A M   F L A R E   F R E E !!!

I actually feel good. I can’t believe it. What the hell is going on? I’m not complaining or anything, but seriously, what the hell is going on? I like it! The timing is great! I need the energy to get through the next few weeks to get shit done. I hear you, PACE. I know. I am learning. Every day I am learning.

What I’m saying is… it can happen, I went from excruciating pain to feeling good. My medication is working. My exercise is working. It’s not magic. It’s not a miracle. It’s work, it’s what I learned from Physical Therapy, Counseling and research and most  important it’s about being consistent! Don’t give up. Each and every day I have to remind myself that it takes positivity and work to create change. Some days it takes more positivity than others… “This too shall pass” are the words I meditate by on those days. I deep breathe and on the in and out, I say those words and with each breath I get a little bit calmer.

This last 6 weeks has been a super-duper challenge for me. I thought I was going to lose the ability to walk and was starting to wonder about the use of my hands. Very scary. Noone can understand the fear this creates in the brain of a fibromite. I am feeling really blessed to be able to walk without my cane for an entire day.  I’m excited to be able to go to my son’s High School graduation in a couple weeks and not have to worry about being completely out of it. I can walk without everyone asking me what happened! This. is. awesome.

I understand tomorrow is not promised. I understand tomorrow I could wake up and not be able to walk. I have not lost my marbles (well that can be debated, I know! :)). Today is a great and awesome day. I am going to enjoy it. I am going to appreciate what I have. If tomorrow is completely different, I will deal with it when it comes. For now? I can walk and I can do what I want and I LOVE it!!

You all have a beautiful week and thank you so much for stopping by! Please leave a comment and let me know how you are doing.

Stay cool!

PS. I started and stopped the two posts below and never got around to posting them, I thought I’d include these posts with this one since it’s all a part of my journey…

Wait Do I Really Have Fibro?

It’s May 13th… April 9th is when it started. That is the day I woke up to the most horrible FLARE in a long time and I am praying tonight that it is finally coming to an end. Today was the first day that I woke up and felt human. I had one of those days, you know what I’m talking about — you wake up and you think “Wait, do I really have fibro… I’m feeling really good right now!”.

I felt so good I didn’t want to admit it to anyone. I didn’t want to say it out loud. I didn’t want to even whisper it. I did, however, say to myself “Today’s going to be a good day!” over and over in my head. I believe in the power of positive thinking.

You have to understand… stay with me for a minute.

  • For the last month I haven’t been able to stand up in the shower, wash my own hair and to get really personal, on most days I needed help to wash my own body.
  • I haven’t been able to walk without my cane. Walking with my cane, making it around the block would be an amazing feat!
  • I haven’t driven myself anywhere in so long, it’s amazing I even know how to drive anymore!
  • Just this week… I was in a wheelchair on Tuesday so I could participate at a conference with my colleagues at work. A wheelchair. Let me say that again… a wheelchair. Once more, a wheelchair, and let me say I was the first one to use it AND I borrowed it from a woman in her 90’s who is in WAY better shape than I.
  • Just yesterday, I was in tears I was in so much pain before going to the office.

All of a sudden today, I was able to walk without my cane and I was able to get through most of my restorative yoga class and it’s the end of the day and I now definitely feel the pain, but I’m still okay. This pain stuff is just crazy. So, all I’m sayin’ is… the FLARE better be gone! It visited for over a month, it’s definitely time to go!!

Things are about to get really crazy around here… and I mean crazy. PACE is going to either be my best friend or my enemy. I guess that’s the real definition of FRENEMY. Lord have mercy. Did I really just say that? Seriously. I need help. I mean mental help, I’m starting to lose it. Okay, so I already lost it… so that just means I don’t have to worry about losing “it”, right? If anyone finds my “it” anywhere… just send “it” back to me. I don’t know what you’d want my “it” for anyway, you can see by the way I operate, my “it” is not in very good condition!

See how easily I am distracted? FOCUS! Okay so! I have a lot coming up in these few weeks, I don’t have time for a FLARE.

Day 25 of My Very Intense Flare…

I will apologize now. I am not the most upbeat today. It’s Day 25 of a very intense flare. One of the most intense flares in, wow, SIX months! Just looking back through my posts, I thought it had been much longer, but it’s only been six months. I am now feeling just a little bit worse. I am going to allow myself to feel like shit for just this moment so I will hopefully feel better by the time I get done writing this post. It’s getting very difficult for me to keep it together minute to minute, hour to hour, day-to-day as this flare continues.

This flare is different from before… very different. For the first time in the history of my flares, I cannot get enough sleep. I am tired all the time. I mean, I am exhausted when I go to sleep, when I wake up, when I eat, when I work, when I breathe… just when. On Monday when I went to the dr., he got it. Exhaustion from pain. This time is different. I am in level 8-10 pain 24 hours a day, 7 days a week… every second of the day… and it makes me tired. It makes me frustrated and it’s starting to make me really angry. I am really, really, really trying not to let this shit take over my life.

Today was the day I hit the wall. If I had the strength I would have beat the shit out of the wall. I have taken a vacation and not been able to walk, I have been to a wedding and not been able to dance, I have been to the beach twice and not been able to walk to the ocean… for me? not walking to the ocean is actually a first… I should not whine, it’s a blessing that I can walk at all. It’s a blessing that I am able to go to the beach and I was invited to a wedding… a beautiful wedding with some great people and I got to watch my son dance all night, it was the best night ever! What the hell am I complaining about? I’m not complaining… I’m not.

I believe what I am trying to say is… I am tired. I am in a lot of pain and it is hard to deal with. Some days are harder than others and today is one of those hard days.

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Fibromites, Do You Wake Up Refreshed? Just Smile!

It is Saturday morning, 6:30am and I am sitting here wide awake. Ask me why… c’mon, ask. Come onnnnn…. Okay fine! Because it’s Saturday and I can actually sleep in (well not really, my daughter has a soccer game and I would have to get up in a bit anyway, but that’s not the point!). The point is, it’s Saturday and I don’t have to get up at this time and it’s like flipping backwards day as usual in my life and I am awake for no reason when I should be asleep and here I am wide awake! Whew! That was a long sentence! It is not as if I got enough sleep so I woke up feeling…. and I hate this word now –> REFRESHED (Wait a minute, I honestly have tried to take that word out of my vocab… so rewind, erase and replace hate with strongly dislike). How many fibromites actually feel “refreshed” when they wake up? (could you actually feel me doing the quote/unquote really strongly with my fingers that time? because I was, well as strong as these grip-less hands would let me). I mean, that is just not something I have felt in years. I wake up feeling like …. hmmmm … not sure I have thought about this … I wake up and think about how I slept, what hurts and will I be able to walk when I get out of bed and then I try and figure out what day it is. Now as my daughter says, “sharing is caring” so when y’all read that one, laugh with me, not at me… because, for example, today I woke up and really thought it was Thursday for some reason. I was pretty happy it was Saturday once I figured it out. Still laughing at me, I mean, with me? That’s alright, that’s why you visited my blog today, some pain relief. :)

So back to my point, most days I wake up feeling tired, half of those days along with tired foggy decides to join the party and maybe 15% of those days depression decides to crash the party and bring everyone down. So refreshed never really happens. I wonder what that’s like. You know when you are watching t.v. and that commercial comes on with the chick in her all white pajamas changing the all white sheets, and the light shining through the wall of glass behind her and she just looks all clean and refreshed? She is the anti-me. I ha… oh wait, really dislike her.

It’s really not all bad, it’s my reality. I’m just saying it’s Saturday and “hellllllooooooooo”, just thought I might sleep in today, but apparently I needed to get up and greet the world. Okay… seriously, I am smiling… I really am. I just realized it. I am crackin’ myself up as I write this… I have to take my own advice, right? Don’t take life too seriously… and THAT my friends is why I am up early. I needed to wake up and get an early start so I could smile and hopefully make you smile. If I didn’t get up early enough I would not have been able to write this before getting out of the house for my daughter’s game. That’s the start of my day… smiling. Awesome!

Hope you enjoyed my post. Thanks for stopping by and I hope you start your day with a smile!

Stay cool!

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Reach One, Teach One: This video on Fibromyalgia is Amazing!

I read a lot of information on chronic pain and specifically Fibromyalgia. I personally feel like I am pretty educated. I just finished going through an awesome 10-week Level II Chronic Pain program through Kaiser (which I highly recommend to anyone who has Kaiser, send me an email if you want more information on this).

The video in the link below is of Dr. Sean Mackey, Chief of the Pain Management Division from the Stanford University Medical Center, he gives a detailed presentation of Fibromyalgia/ Chronic Pain that is just amazing… I generally have the attention of a gnat, I watched this entire video… IN ONE SITTING! I kept wanting to look away, or put my laptop down and do something else, but I was so intrigued by the information I stayed glued to the screen. He provides the answers to:

  • What is Fibromyalgia?
  • What are the symptoms?
  • What are some of the treatment options?
  • What is pain?
  • How should fibromites/ chronic pain patients be treated?
  • Alternative therapies
  • Latest studies
An Update on Fibromyalgia

http://www.researchchannel.org/prog/displayevent.aspx?rID=28078&fID=345

Tip: If you watch directly from the site (and don’t download the video), you will get the video with closed captions which is really nice to follow along with Dr. Mackey as he speaks.

The date of the video is October, 2008

Running time: 1:14 (well worth the time!)

You will learn everything you need to know about FMS in a language that anyone can understand. He is positive and I felt almost uplifted watching this even though the information was sometimes difficult to hear. He knows his stuff!

Encourage your friends and family to check this out so they can better understand what you are going through.

Thanks for reading, I hope you find this helpful!

Stay cool!

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How Do You Recover?

How do you start your day? If it starts out good or bad, does that determine how the rest of your day will go? Do you have the ability to turn your bad day around if and when it turns sour?

I tell you… with chronic depression, it’s like climbing up Mt. Everest carrying a 100 lbs. of cement on my back to turn a bad day — to good. Some days it just doesn’t work out. Some days the depression just hangs around like the cloud of dirt around Pigpen. Some days I am able to turn it around.

Yes, I take medication. I take medication to help me manage my pain, my depression and to help me sleep. I remember what it was like without medication. I know I don’t want to go back to those days. I hate putting these pills into my body. Every time I have to refill my pill boxes, I hate it. It cause me to go down a bit, but I have to remember that in the end it helps me. I sleep better, It helps me walk, work, spend time with my family… it helps me be human.

I worked about 70 hours this past week. I had a colleague tell me on my fourth work day at our business dinner, when I finally gave in and used my cane, that I didn’t need to use my cane, that I had walked fine all day without it. Nice. It still kills me to have to use a cane, and it’s always nice to get comments like that on top of my own pride. By Friday I could barely stand up. A few hours into the day I just lost it and during the meeting started to tear up. Really nice. Nothing like being in so much pain and so exhausted you just can’t do anything but cry… while at work with your entire management team.

How do you recover on these days? I’m not sure I did on those days. Exhaustion is difficult to recover from without just laying down and going to sleep. It’s Sunday now and I have spent the last 48 hours since coming home from work on Friday basically in a complete fog. I have either been asleep or laying down only to get up to go watch my daughter’s soccer game and to take her to the store. To go watch her game was so fucking painful, I really had a hard time even watching. So five days of work, 2 days of sleep. Normally tomorrow I’d be going back to work, thankfully I am on spring break with the kids. This has been my schedule for the last few months.

So… again… how do you recover on these days?

  • You pray
  • You rest
  • You give yourself a break
  • You relax and take care of yourself
  • You smile
  • You laugh
  • You remember it’s just one minute, one hour, one day… you don’t look past right now

That’s what I need to do.

Take care of you.

Thank you for stopping by… please share with me how you recover.

Stay cool.

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I Close My Eyes…

I notice I close my eyes a lot these days…

When I am in physical pain.

I close my eyes.

When I am hurt emotionally.

I close my eyes.

When I am mad.

I close my eyes.

When I am sad.

I close my eyes.

When I am frustrated.

I close my eyes.

When I am tired… exhausted.

I close my eyes.

When I need to think.

I close my eyes.

When my heart is feeling scratched and torn.

I close my eyes.

When I feel disrespected and I am about to lose my mind.

I close my eyes.

When I am talking and I’m not being heard.

I close my eyes.

When I need to take a mental break.

I close my eyes.

I find myself thinking what it must feel like to be blind…. memorizing my surroundings and taking mental note of what I want to remember. Visualizing in my mind the environment I want to keep in my memory if I am not able to see.

What is this about? I have no idea. I have just noticed that more and more in the last six months, it is a physical response that I have started to use. It was not something intentional, but also not something I decided I didn’t like. I like it. I like that it makes me stop and take a moment to close the world out and take a break. It tells me… “don’t lose control…. just take a moment and get it together.” This life or any life is not easy. God did not put us on earth for “easy”, we are all here for different reasons. If we accept that and stop fighting it, then life becomes easi-“er”.

I believe I know why I am here. I am put in situations and I help out where I am needed. In the end I am definitely rewarded. God is good to me. As long as I look at the big picture and don’t just think about “ME”, I do well. This life is not about me.

It’s interesting, I got up this morning, to write about something completely different. God certainly does work in mysterious ways.

I hope you enjoyed this post, please leave your comments.

Stay cool and have a happy Easter!

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Nothing like a little ADHD to go with your morning coffee!

I don’t have enough change in my life so once again I decided to change the theme of my blog. There aren’t a whole lot of WordPress themes to choose from, which is probably a good thing for me since I like to change these types of things,  I am still obsessing about the look/feel of this blog. I am crazy woman. I am the person that decides to move the furniture… RIGHT NOW. I am the person who decides that I want to be organized and need a new planner… RIGHT NOW. I need to get organized, therefore, I need to figure out a new file system, which requires new files, which requires a trip to the store…  I need to find a way to track my actions, so I need a new binder or a new planner or a new system or a new spiral notebook or a new ARGHHHHHHHHHHHHHHHH!!!!!!!!!!! WAKE ME UP OUT OF THIS CRAZY ASS NIGHTMARE!!!!!!! MAKE IT STOP!!!!!! Yes indeedy, I have ADHD… I have told you this before. Nothing like a little ADHD to go with your morning coffee. Or how about a little ADHD to go with your morning review of actions… it goes a little something like this:

Me…. reading email, drinking coffee… getting my brain engaged and ready for the day.

My ADHD: “hmmmm so much to do, how are you going to figure out how to prioritize all this stuff… I mean where do you even start?  You should start by prioritizing! You should figure out where to start… You can’t start until you prioritize. You have to prioritize before you start!”

Me: “Don’t do it.”

My ADHD:  “What do you mean don’t do it! You KNOW if you prioritize you’ll be organized.”

Me: “Don’t do it. IT’s A TRAP!”

My ADHD: “Puh-lease. A trap? I wouldn’t do that to you. I am here to help. WE are a TEAM. You need to prioritize. How are you going to prioritize?”

Me:  “Shit how am I going to prioritize? I gotta figure out how I’m going to prioritize! I gotta get a system.”

My ADHD: (whispers) “WINNER!”

Me an hour later…  “SHIT! SHIT! SHIT! I did it again!!!! Oh man I gotta stop getting distracted and focus.”

I have a system for capturing my actions. I just have to keep using it and getting off-track and letting myself get  distracted. It’s just another way of bringing me down and creating pain.

Tonight changing the theme on my blog was a nice distraction after a very long and painful day. My work has been very challenging since transitioning to my new job. It’s difficult to work the long hours and manage the pain.  So after a long day, the time I took to look at the themes and find and edit one of my photos for the header and put a new picture up of Tani… well, it was worth it.

This is the thing… if I can do one pleasurable activity a day, my depression should stay manageable. That’s the hope anyway. I think it’s working for the most part. I have learned this in my pain class. If I can manage the depression, it’s just one more way of helping to manage my pain. Once again, there’s always a connection.

I can manage through the pain. For me, this is my life. In other words, if I accept this is my life, then I will continue to LIVE. I won’t let the pain take me away from living. If I wait until I feel good and there’s no pain to do anything… I may never be able to leave my house! It’s easier said than done… but we all work on this every day, right?

So this post is kind of all over the place, but sometimes it’s just like that! I can’t help how my brain works. I mean you just get to read this… I’m livin’ it 24/7! :) I started writing and I honestly thought I was going to write about something completely different and ended up, well… here.

I hope you enjoyed it. Thanks for reading! I hope you leave a comment, I really appreciate hearing from you!

Stay super cool!