Getting back up

As a kid, my grandparents and parents always taught me to be strong, to never give up. Yes, sometimes they would say that I was just plain stubborn. I would always reply that I am just tenacious. But, somehow along the way, Fibromyalgia had beaten me down. It was a slow, steady beating. The type that you really don’t notice, until you realize that you can’t get back up. I would try something. Fail. Get back up, and try again. After awhile, I gave up trying as hard. I lost that tenacity, my stubborness. I could not get back up.

Then, about two years ago, the bull in me called BULLSHIT. My Daddy didn’t raise no fool. Why was I being one? Why did I roll over and play dead? Shit, I ain’t dead yet. I just have Fibromyalgia.

So, I stood up. Dusted myself off, and tried again. But that’s a whole other story

Today, I am thrilled to say that I am off of all my medication. Yes, all. I still have a few fibro flares, but they are only fractions of what they used to be. Yet, that fear of falling down and not being able to get back up is holding onto me with more strength than I care to admit.

Last Summer, I went to climb Half Dome. Well, I should say tried to climb Half Dome. I pushed it on the hike by trying to keep up with my hiking group, and by the time we reached the sub-dome, I fell down and couldn’t get up. Actually, my body plain gave out. I started seizing and an overwhelming pain ran throughout my body. I’m sure on the outside, I just looked tired. But on the inside, I was screaming with all my might in pain.

Though somehow, I did, I did get up to try again. I made it back down the mountain and continued to fight to improve. As soon as my two week long pain attack ended after Half Dome, I placed another physical goal in my sights — I booked a trip to hike for five days in Peru. Don’t ask me why I went from not making a 22 mile day hike to booking a high elevation, almost week long hike in another country. But if you are gonna live, you might as well give it all you’ve got. Right?

Next week, I am off to Peru to hike to Machu Picchu, five days of hiking in fact. My emotions are all over the place. I’m excited. I’m thrilled. But most of all, I am scared to death. And, this fear is eating me alive. It’s starting to eat away at the joy. What if I fall down again? What if I can’t do it? What if I have a pain attack on day one? Tons of what ifs. And this time, I am doing this with perfect strangers.

Then, I remember that I am in that stage of my life of  called “after I no longer accepted that I couldn’t do it.”  So, I’m getting up. Packing my bags and facing my fear head on.

Here’s to living! See ya when I get back.

Getting My Life Back to What It Was Like Before Fibro

In March, I hit my 10 year anniversary of my rebirth. Well, kinda a rebirth.

We all divide our lives into before ___ and after ____. Before I lived in SF, after I moved to NYC, before kids, after the kids went off to school…and so on and so on. For me, it’s always been before my life with fibro and after my hysterectomy. On March 14th, I hit my 10 year anniversary of my last surgery – my hysterectomy. And so, it got me thinking…can I remember my life before fibro? I mean, I can remember my life before my hysterectomy. But, that’s easy. After all, it’s only 10 years ago. But somehow, my memory fades when I try to recall what my life was like before fibro. It’s become so much of who I am, that I can’t see my life without it. Until now…

I strive to be myself and not my fibro. However, that’s easier said than done. Fibro has ultimately changed what I can do, what I eat, how I play and above all who I am. But for years now, even though I fight it, there has always been a little voice in the back of my head saying, “You can’t eat that, do that or try that because you have fibro.” Today, that voice has disappeared. Today, I am in charge of my own life, what I do and how I do it. Yes, fibro is still part of me, but it is not me.

How’d I do it you ask? Well…

On step at a time. Baby steps. I made up my mind that I would and could achieve my goals.

Cataract FallsGoal #1: Get active

For the past decade, I have strived to be healthy and happy. However, I never have been an overly active person. I’ll admit it – I was much more of a couch potato than an athlete. Fibro was always an excuse not to get off that damn sofa. So, I decided to drop the excuses and move. Just move.

For years now, there have studies showing that even minimal exercise can reduce fibromyalgia pain. Little did I know that my daily “just move” routine would almost eliminate my pain attacks. After 6 weeks of daily walking 1-2 miles, my pain attacks went from one pain attack a week at level 7-8 and one 10+ attack a month, to virtually zero pain attacks. In fact, my first day above a pain level of 6 came after I missed my walks for 2 days in a row around my 8 week mark. I noticed a huge correlation between my pain and my activity. If I didn’t walk, I was in pain the next day. And when I walked, even if I was in pain, the intensity level of pain dramatically decreased. Such a catch 22.

 

IMG_4966Goal #2: Go on vacation without second guessing what I could do based on my fibro

I hate it when I go on vacation and have to take a rest or miss out on some activity because of a pain flare up. When I booked my last trip to Thailand, that was one of my biggest fears – FOMO. So about 6 – 8 weeks into my exercise routine, I added going to the group fitness gym around the corner from me. At first, I thought I was going to die 10 minutes into the 55 minute routine. However, after about 6 weeks of going 2-3 times a week, I could do the entire 55 minutes without dying – sweating and panting, but not dying.

In March, I went to Thailand. I managed to walk so much that I wore holes in my two pairs of my shoes. That’s not all — I mountain biked until my ass hurt, I kayaked down the river for over 5 hours, and I even rode elephants for days. All without ever letting my fibro get the better of me. It was truly an adventure I will never forget.

photo (1)Goal #3: Get back to a healthy weight – one that is bikini ready

Ok, I’m working on this one right now. I am still exercising regularly. And, as of yesterday, I am changing my diet — less sugar, more healthy snacks. My gym is doing a 6 week program. I’m at the end of week 1. Wish me luck!

 

 

 

half dome

Goal #4: Climb Half Dome

If you told me a year ago that I would be training to climb Half Dome – a high intensity 14+ mile hike, I would of laughed at you. No way would I ever believe that a person suffering from Fibromyalgia could ever hike 14+ miles in one day, nevertheless climb Half Dome. And you know what? I can now see that climb safely and securely in my not-so-distant future — less than 8 weeks to be specific. Stay tuned for updates…

Goal #5: ???

What should I do next? Where should I go next? I am now starting to feel like the world is my oyster.

Even though my goals didn’t involve being able to live a life free of fibro, that’s what happened. Such a happy side effect indeed. 🙂

Don’t Break The Chain: How To Apply Seinfeld’s Productivity Calendar to Help Your Fibro

Dont-Break-the-ChainAbout three months ago, I went for a walk with one of my dear friends. It was a beautiful day here in San Francisco. There was a calmness in the city — maybe because it was Thanksgiving or maybe because Carl The Fog had decided to sleep in. What ever the reason, it was a great day for a hike . So, I called my friend up and off we went.

My friend is a business coach. He’s been telling his clients for years to make the most out of their work and life, especially their health. However, he wasn’t eating his own dog food. He was out of shape and the heaviest he has ever been. So, he finally decided to take his own advice and get in shape. This particular hiking day he was struggling to walk due to a newly twisted ankle. But did that stop him? No, not at all.

I have been struggling with fibro for over a decade now. Too many times, I have started and stopped a new exercise routine because of a pain flare up. And as I walked with my friend, I wondered how he managed everyday to exercise through the pain of his ankle and well let’s face it, life in general. He had one simple answer for me “Don’t Break The Chain”.

The “Don’t Break The Chain” Process

Sometimes the simplest solutions yield the largest and longest-lasting results. “Don’t Break the Chain” is indeed simple, and if you follow the process, it will change your habits forever. Originally made famous by comedian Jerry Seinfeld, the process is simple. Take a big, huge calendar and display it where you will see it everyday. (For me, I placed mine on my bedroom mirror.) If you don’t have a paper calendar, no need to worry — just make one by drawing a grid. For each day you do your task, mark out that day out with a big red marker. Then, it’s easy. Don’t break the chain.

It sounds easy. But, it can be difficult. Say you are about to go to bed, and you see a big gapping hole on the day where a big red X should be. Now, you don’t want to break the chain and start all over again. Do you?

My Chain Experience

I had one simple goal for my chain – movement. It’s all too easy with fibro to sit around and do nothing. Sometimes, that’s all you can do due to the pain. However, I have found that the more I move around and keep my blood pumping the better I feel. Like duh! Right?

So, I started my chain on Thanksgiving day after that walk with my dear friend. I went home and drew out a calendar for 8 weeks, and crossed off my first day. Now, if  only I could keep the chain for 8 weeks, I’d be a golden.

Week one was easy. It was gratifying to go for a walk and come back and mark off the day with a big fat ol’ red X. Week two was the same. Easy going. I tried not to push it. My only goal was to move — to walk. Sometimes I walked around the block. Other times I walked two miles, depending on how I felt.

By week three, my chain was long. And, low and behold I hit a flare up. However, this flare up was the level of pain, a 6-7, that I used to experience at the end of my work week. I was extremely tired. My stomach would not behave, and all my joints hurt. But, all I had to do was look at that chain. Don’t break that chain. So, off I went for a walk around the block. Don’t break the chain.

Results

My chain is now over 10 weeks long. And, you know what…it’s working! My daily pain levels have decreased from a level 4 (0 being zero pain and 10 being kill me now) to a level 2. My weekly pain attacks have almost disappeared. Yes, I have had a flare up with the occasional stress and travel. However, they are at a level 5-6, and never reach a level 10.

For the first 6 weeks, I was walking daily, some days longer than others. After about 6 weeks, I plateaued. So, I decided to join the fitness studio around the corner from my house. When I first started the 55 minute routine of cardio, weights and pilates, I thought I was going to die 10 minutes into the routine. But, I stuck with it. Don’t break the chain.

Now, I go to the gym 3- 4 times a week and walk 2-4 times a week. Even when I had the flu for 6 days, I never broke that damn chain. Since Thanksgiving, I have decreased the amount of meds I take and I haven’t even touched the heavy pain meds.

Am I a fitness guru now? Far from it. However, I feel normal. Even though the sensitivities that come with fibro are still with me, the pain has taken a backseat to my unbreakable chain.

So, don’t break that chain!

Exercise- The Final Frontier

My fibro is definitely better than it was 10 years ago. However, it’s at a standstill as far as improving. My wonderful doctor said that I need to exercise more- oh boy, just what I wanted to hear. Apparently, the best exercise for fibro is cardio. And here I thought simple stretching like yoga was key.

So, for the past month, I have been trying out cardio to help my fibro. I’ve been speed walking about 2-3 miles every other day. Depending on how I feel, it usually takes me 1/2 an hour to a full hour.

But, just like any treatment routine it has it’s ups and downs.

Downs:

  • Hard to keep routine. Every few days I get a pain attack at night– usually after 3rd day of exercise.
  • Waking up and getting my ass going in the am.

Ups:

  • I’ve lost weight.
  • I have more energy most days.

All the ups and downs aside, I’m continuing to try this exercise routine out for at least 3 months. I have found that 3 months is key to figuring out if a new treatment program will work or not for my fibro.

What about you? What exercise routine works for your fibro? Please let me know in the comments below.

Dancing away your pain!

Get your grove on and dance your pain away!

Ever imagined yourself belly dancing your pains away? Shaking your hips, flowing with the rhythm and to the beat of the drums, letting yourself dance the pain away!

Well, a recent research study done at the Federal University of São Paulo proves that by simply keeping active, you can improve your quality of life. They wanted to show that belly dancing could be an effective treatment for pain in fibromyalgia patients.

The entire study consisted of 80 females, ½ of which was a control group, ages 18-65. To qualify, all the participants’ course of treatment should of not changed in three years preceding the study.

All the dance students “ took one-hour belly dance classes twice a week for 16 weeks… Each class had a maximum of eight students. The classes were administered by a physiotherapist with eight years of experience in belly dance. Classes began with a warm-up exercise, followed by the predetermined movements for the day, choreography and a cool-down exercise. The participants received a compact disc with music and an exercise book with the history and movements proposed for the program. Beginning in the fourth week, a set sequence of movements in the form of choreography was established for memorization and training at home.” (via)

In order to measure the outcome of the dance program, all the dancers where asked how they felt at three different times during the program. They were questioned before they started, again at 16 weeks, and lastly at 32 weeks. The number of questions the dancers were asked gave the researchers an in depth view on the outcome of the study. Everything was examined in order to have a complete patient profile including; pain levels, physical functionality (aka the 6 minute walk test), and quality of life questionnaires. Some of the quality of life questionnaires included but not limited to the Fibromyalgia Impact Questionnaire, pain, functionality, vitality, mental and emotional states, social aspects, and self-image.

Now, not to bore you with all the facts and figures of all the results, here’s the jest of the study: GET MOVING! No, really folks, seriously the “control group” of dancers slowly progressed on all the quality of life tests. Having said that, an interesting thing happened with the fibromyalgia group of dancers; at the 16-week mark, on most of their testing perimeters, their functionality scales became slightly worse than from were they started. But, not giving up does pay off! By the end of the 32-week course, the functionality scales perimeters went dramatically up for the dancers with fibromyalgia.

What does this all mean? Remember when your Mom would tell you it’s going to get worse before it gets better? That statement is true for when you add an exercise program into your life. Remember to take little steps toward finding a path that is healthy for you. Don’t try to go do an all night dance-a-thon on your first week, but try walking for ten minutes in the morning. Just remember, don’t give up. Keep your body moving. Keep stretching and keep a positive outlook on life.

In my never ending search for more information, I found this great website/ blog on dancing for pain relief! Check it out here-> http://dancingwithpain.com
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For more information on the clinical trial please see-> Effectiveness of Dance on Patients With Fibromyalgia

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