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.
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.
Before I start to whine—CONGRATULATIONS!!!! I AM SOOOO VERY HAPPY FOR YOU!!!
Really, I am. But–you knew that was coming–how did you do it???? I know you said your yoga, but what medicine are you taking??? Beside our good friend Vicodine, I really have not seen on anyone’s blog what their regime is. I am really, really curious! I have tried the usual suspects advertised on TV, to no avail. And, I know it is so different for each of us. But, when someone has a SUCCESS like you have had, I have to ask—WHAT ARE YOU TAKING???
I have been in a “flare” (really, another limp word) for five years. Yes, five years. I do not exaggerate. I know mine is due to intense stress in my life that I have had no control over. It is a roller coaster that only goes at terrifying speeds DOWN. Never UP. And which, obviously, I have not dealt with effectively. Believe me I am trying. I am trying.
But, I really need to know, what meds are you taking?
If you would rather not post, could you email firstname.lastname@example.org ?
And, truly, CONGRATULATIONS! I AM SO, SO, SO HAPPY FOR YOU!!
CJ, in time
Happy to share… first… I was taking Darvocet and Ibuprofen for a a year and a half. That did nothing but making me tired and didn’t help me HELP MYSELF. So I had to get off the narcotics first, which is always the first step to managing pain. Are you drinking a lot of caffeine? I had to cut back on that too, still trying to cut out completely.
I have Kaiser for my insurance which has truly been a blessing. If you have this as your insurance, demand from your primary care physician to be referred over to the Dept of Physical Med & Rehab. Once there, you need to get into the Level II Pain Program. This program will save your life… you will learn how to live again. If you don’t have Kaiser – this program (same name) is offered through all major hospitals nationwide. Ask for it.
This is what got me to where I am. They taught me how to exercise so I could move again, what medications to take so I could sleep, and what to take for pain, and how to manage emotionally. It’s absolutely awesome.
This is hard work, like I said, there is no magic in it. Every day I have to remind myself to take my meds and to exercise.
It’s so easy, because we are so exhausted, to give up… I am also really stressed a lot of my life… but you know what?? If you let that take over your life, you will live with pain. You have to LET IT GO!! I really suggest you try Restorative Yoga, that also has made a difference in my life. I also recommend you take a look at the following video, if you haven’t already… I have a link to it on my blog: https://myfoggybrain.wordpress.com/wp-admin/post.php?post=493&ac. If I have learned anything, the most important paths to success… 1) positive thinking/ relaxation, 2) any form of exercise, 3) get on the right meds and take them consistently.
There are going to be flares and they are going to be hard. What can you do to calm your stress? Send me an email, let me help you…. email@example.com.