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. 🙂

Things to Remember When You Have Fibro

After living with fibromyalgia for over a decade, you’d think that I have this condition all figured out. Right?

Well, not quite. I still have to remind myself a few things. So, I made a lil’ deck to help myself and others remember the simple things to help cope with fibromyalgia.

Do you have fibro or chronic pain?

I’d love to hear what simple reminders help you out. Please let me know in the comments below.

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.

Dating: The Overlooked Luxury of the Common Man

Dating always reminds me of those National Geographic videos of animals butting heads with each other, demonstrating who is the stronger mate. Darwin’s theory at it’s finest.

Unfortunately for those of us living with Fibro, dating is not as simple as butting heads.

Fibro affects about 3-6% of the world’s population, 75-90% being women. (via www.fmaware.org) Patients with Fibromyalgia are generally diagnosed between the ages of 20-50 years old, right at the busiest times of their lives. (via Disability Secrets )

Everything impacts your health, and you learn how to adjust your daily activities in order to cope with your pain. Diet, exercise, sleep, stress, medications, and even changes in the weather can affect your overall pain levels; thus, effecting your mood and even just your desire to date, not the mention getting your grove on. So while your body is picking a fight with your love life, how do fight back?

You go to war! That’s right. Make your battle plans ladies! Put on your war paint, polish those boots, and make sure that the lovely ladies are freshly pushed up–because this band is marching right out the door!

When going into battle, the key to winning is to know what you are up against. Alter the rules of engagement to fit your comfort level, emotional and physical. And if the other side runs away scared, they best keep running, because you are worth more!

Location, Location, Location!

Picking the correct battle site is the key for any successful encounter. If the wrong location is acquired, tensions could easily arise. Avoid places with annoying bright fluorescent lights or noisy bars for risk of a total system failure. Many people living with Fibromyalgia have hyper-sensitivities. Loud noises, bright lights, and even strong odors will induce their pain.

Let’s look at the average date spot of the local pub. For a Fibromite, it might as well be Stalingrad. A pub is the classic scenario of a good place gone bad once you have Fibromyalgia. Everywhere there’s a pain trigger just looking to end your love affair. Alcohol is on the not-to-do list. It will either make you start doing the hokey pokey from interacting with your medications, or it will make your pain worse from gluten and sugar allergies. Either way you’re not getting laid, just f-ed up. Then, the noise factor of the bar will heighten your nervous system; thus, making you jumpy, uncomfortable, or just plain in pain. All in all a pub is not the best date spot for a Fibromite.

So, what hunting grounds are left for a young Fibromite?

Try a new activity

Emily Brandon has some great suggestions in her titled “7 tips for Women over 50”. Wait..a minute…I’m still in my 30s. Damn it! But hey, don’t knock it ‘til you tried it, right?

…Expand your social circle by taking on new actives such as a cooking class, hiking group, or becoming a docent at a park or museum. “Find a situation that brings people together and offers an opportunity to meet and get to know each other,” says Abigail Trafford, author of As Time Goes By. Her suggestions for great places to meet a love interest: community centers, elder hostels, music and book clubs, or other community associations.
Via Us News

Even though an elder hostel might not be the best place to meet your Prince Charming, Emily does make some excellent points. Joining community groups is a great idea to meet new people outside of the bar scene. Try participating in a hack-a-thon, an art class, or even helping plant your local community garden to meet new people.

Above all, don’t give up on the hunt. Take your time, and have fun with it!

Use Twitter #hashtags to find support

You can use Twitter hashtags to find people, organizations, and research. They are a wonderful way to organize tweets, find people with similar interests, and find topics that appeal to you.

@fibroflr


You can also follow my tweets @fibroflr

However, like anything, too much information of one thing can be a bad thing. Mark Twain said it best- “Be careful about reading health books. You may die of a misprint.” I like to remember that whenever I do research on the internet. I should just have it inscribed on my laptop in bold letters!

Here are a few #hashtags that I like to follow and search on Twitter:
#fibro
#fibromyalgia
#pain sometimes this hashtag will produce too much
#FM short for fibromyalgia
#FMS short for fibromyalgia syndrome
#spoonies great to use just to chat with fellow fibro people online
#FF Follow Friday- an event that happens on Fridays, people will tweet out who they recommend to follow. It’s a great way to learn which users to follow.

For more info on how to use Twitter #hashtags, read Mashable’s post on the topic.

Approach

We all have those days. You know what I’m talking about it. The days that begin at a level 4 but end at a 10. The days that you find yourself curled up in a ball, whimpering for it all to end.

And it will end. That’s the thing with fibromyalgia flare ups, they comes and goes in waves. Your stress will end. The cold rainy weather will pass. And yes, your mother-in-law will return home. The trick to surviving it is your approach. I try to do it with laughter. And on that note, I leave you with this:

Finding support on Facebook

A good support network is key to facing the many challenges that can come with fibromyalgia and chronic pain. Our friends and family help, but it is always nice to talk to people who know exactly what you are going through.

Today, just about everyone is on Facebook, a social networking site. Organizations now have a presence on Facebook were you can communicate directly not only the organization, but with others who are going through the same challenges you face daily.

Many people use Facebook over Google as an online search tool. Even in the past year alone, Facebook has closed the gap on user search preference. (via Mashable 1/20/2011) So why not use Facebook for your health support as well?

Connect with the following Facebook pages online for more support:
Foods For Fibromyalgia

Deirdre Rawlings manages this Facebook group. Follow it to receive updates on how your diet impacts your health.

Lumigrate: Fibromyalgia on Facebook

This is Lumigrate’s Facebook bulletin board to remind people of everything that is happening on their website.


National Fibromyalgia Association

When you follow the NFA’s Facebook fan page, you can connect with other fibro patients and supporters. The site posts everything pertaining to educating, empowering and encouraging the fibromyalgia community.

These are just a few examples of the social communities on that I follow on Facebook.
What Facebook groups or pages do you follow? Please let us know by sharing your comments!
Thanks!-Amy

Holiday Survival Kit in Your Purse

Have you ever been judged by the type of purse you are carrying? Kathy Eisman reveals just what our handbags reveal about our personality, inside and out in her book, How to Tell a Woman by Her Handbag. She suggests that the colors and styles of our handbags say more about our personality than most might first believe. For example, if are a woman that just carries a clutch with the basic essentials- phone, wallet, and keys- you are a minimalist with organization down to a science.

So this got me thinking, how do I go to all my holiday parties without my purse revealing, “ My feet hurt! I would really love a glass of wine, but if I do I’ll get sick- Oh, and I caked on the eye make-up to hide the fact that I’m really tired and in a lot of pain. Damn, is there somewhere comfy to sit down around here?” Through years of planning and of course many parties, I think I have finally figured it out.

Party Date Make your purse a pretty survival kit for the holidays:

Packing the perfect purse is an essential tool for managing chronic pain especially during the holidays. Temptation lies around every corner this time of year, whether it’s staying up into wee hours of the night, eating too many sweets, not getting enough exercise, or just extra holiday stress; all of it can make us grumpy, tired, and in more pain than normal. So, when you do go out to paint the town red, pack your survival kit in your purse!

Plan your survival kit depending on the length of the event and the location.
First place aside the your basics:

The Basics:
• Phone
• ID
• Insurance card(s) (health, car, etc…)
• Cash
• ATM and/or Credit Cards
• Keys
• Lip care (Some medications can dry out your lips. Carry your favorite chap stick, gloss, or lipstick with you to keep your smile looking it’s best!)
• Mint strips (Medications can give you dry mouth. Try either mint strips from Listerine or small Altoids for relief. Plus, their small size makes them the perfect purse accessory.)

As long as I can rest my feet, get some water, and find a little nosh within my diet, the above basic list can take me to any holiday party, and it fits perfectly inside any fashionable wristlet.

The Basic Plus:

Don’t know what to expect from the party? How are you getting there? Will food be served that is on your diet? How late will you be out? Too many unanswered questions? Then, carry a bigger purse for your party survival kit.

• The Basics (see the list above)
• Water bottle
• Snacks- either a granola bar, some nuts, or dried fruit
• Paper and a pen

It’s amazing what a little food and water can do to keep the party going! By stabilizing your blood sugar, or helping your stomach with your medication, a lil’ bit of food can make a huge difference. I bet you are wondering why the paper and a pen? Besides getting cute guys numbers, just kidding (not really) I use it to write notes to my friends such as, “I’m tired, I’m going to catch a cab home. See ya! Love Amy.” Or just “Can we go soon?” In a big, loud party a simple note works wonders instead of trying to yell into your friend’s ear.

Other things to carry:

• A scarf or a wrap- Tend to get hot/cold a lot? Stay comfortable with an extra layer.
• Ear plugs- A party can sometimes be too loud. Need a break from the noise, but you don’t want to leave yet? Try on a lovely set of earplugs to step away from the main action. The really cool thing is that no one will notice. Everyone will just think you took a look around, or sat down for a bit.
• Anti-bacterial lotion (Purell)- Holiday season= flu season! Keep yourself sanitized.
• Hand Lotion- Medications and cold weather can make your hands dry. Help keep them soft and comfortable.

Arm yourself with your own holiday survival kit, and you will always be the life of the party!

Fun blogs to read:
www.girl.com.au
chick lit is not dead

Which came first the chicken or the egg?

Which came first?The age-old question of which came first the chicken or the egg baffles scientists and comedians alike, and especially chronic pain patients.

Similar to the auras that precede migraine headaches, the onset of many of my pain attacks begin with simple yet effective signs telling me to, “Batten down the hatches girl, a storm’s a brew’n”. Usually a few days before a major pain attack, my IBS (Irritable Bowel Syndrome) acts up, my appetite decreases, and my sleep becomes restless. And, just to make life interesting, my warning signs have gone from a simple physical symptoms to a complex list of disorganized and unpredictable physical, neurological, and emotional reactions.

Part of the course with Fibromyalgia is memory lapse and a other neurological aliments called Fibro Fog. For example, my favorite is always the game of “Where did I leave my keys? – Just to find them in the fridge!” Fibro fog has always been manageable for me, until lately when it has begun to impair my ability to fully do my job. Imagine always having that one word on the tip of your tongue, that one idea just outside of your reach, that one memory remotely within your view- that is what my life feels like before a pain attack with Fibro Fog. Add in my usual IBS, sleep and appetite issues, and my life is just peachy.

This change in my body’s behavior led me to schedule an appointment with my pain doctor. Here’s the kicker- we do not know exactly what is causing the neurological issues. It could be the stressors in my life, my FM condition itself, or my medication. Hence, what came first the chicken of the egg?

The medication that helps my neuropathic pain has a side effect that could be causing my neurological symptoms. To make matters worse, without this medication I could not function as a normal member of society because of my nerve pain. On a day without a pain attack looming, my medication is at the appropriate level. However, combine the medication levels with the chemical reactions my body goes through before an attack, and WHOA MAMA let the Fibro Fog games begin.

So now, what do I do? My doctor and I decided to play the waiting game while I document my reactions over the next month. If we change my meds, I could end up in more pain, end up with a different type of pain, or better yet, end up with a whole other set of side effects: either physical, emotional, or neurological. Sometimes not knowing if the issue is a symptom or a reaction is the hardest puzzle to solve. Hopefully, by going back to the basics of keeping a pain journal will resolve all of our questions. I guess until then I will have a bunch of frozen keys.

Other sites to read on Fibro Fog:

www.fmaware.org
www.health.com
www.fibrohaven.com

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