Tag: Musculoskeletal Disorders

FIBROMYALGIA & BEING A SOCIAL PARIAH: REINVENTING YOURSELF AFTER LOSING EVERYTHING (PART 2)

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typing on the computerWhat if you never had fibromyalgia? How would you have lived your life up until this moment? What dreams would you have already fulfilled? Better still, who would you have created yourself to be?

Here’s the deal, regardless of whatever your chronic illness is, there are likely many questions like the ones above that you have asked or are actively asking yourself right this very minute.  It’s human nature to wonder about the possibilities, especially when it comes to your own life (and if you aren’t wondering, please, ask yourself why).  Maintaining our curiosity, that element of wonder, about ourselves and our the world around is key to making any significant change in the way we live.  When we shut ourselves down and shut out the world, we are essentially denying ourselves access to the power that subjective and objective knowledge can bring to furthering our self-understanding.  And increasing self-understanding means increasing our ability to achieve self-mastery.

When we think of self-mastery, we may think of complete control of the self, i.e. control of thought which leads to control of actions, which means better ability to respond (not react) effectively to the world around us.  Simply put, self-mastery, self-understanding, and self-awareness go hand in hand, best summarized by this quote:

Watch your thoughts, they become words;
watch your words, they become actions;
watch your actions, they become habits;
watch your habits, they become character;
watch your character, for it becomes your destiny.

14533091400317-e1453308786450If you have fibromyalgia, then you know that one of the first thing you lose is control.  You lose control over your body and your mind.

The physical activities that you used to do with ease now prove difficult. The memory that you once prided yourself on now has sticky notes all over it marked fibro fog.  That’s just the way it is. There’s no shame in it. Having fibromyalgia means 1) losing control over the physical vehicle that transports who you are (body), and 2) losing control over the mental vehicle that relays your who you are to the world around you and to yourself (mind).  Of course, the severity of the loss depends of the severity of your fibromyalgia…and your engagement in self-care.

You’re Not Broken, Just Different

Anyone who knows me well knows that I do not believe in regret. Truly, I don’t. I believe in lessons learned.  I think regretting your life, in any shape or form, does not help you to move forward from wherever you are, especially when you have a chronic illness. The fact is the past is in the past. Yesterday is already the past. And today will be the past quite soon. So, here are the only questions that you need to ask yourself today:

What step(s) will I take to move my life forward today?

What step(s) have I taken to move my life forward today?

They are really simple questions with big implications. They imply choice.

You did not have a choice in having fibromyalgia. You do have a choice in whether or not you will allow it to control your life. Although you may feel broken, unwanted, used up, without purpose, or simply helpless, you are not.

You are not broken. You are different. 

The person you knew yourself to be is in the past, along with yesterday and all the days before that.  The high points and the low points of that person is gone. Keep her or him in your memory with fondness, but do not dwell.  Like how you may think fondly upon your teenage self or child self, think so upon who you were. But get excited about who you are and who you are crafting yourself to be.

Remember how when you were a teenager or a child, you couldn’t wait to see what type of adult you would be? Perhaps you became that adult, perhaps not. Either way, it’s time now to tap into the curiosity, to apply today that wonder that you had about the unknown you. It’s time to tell yourself that there is nothing to fear in being someone you don’t know or cannot yet imagine.

This is the first step in reinventing yourself: getting to know the new you. 

How do you do this? Ask yourself the first question I proposed above (What step(s) will I take to move my life forward today?), then take the quote above as inspiration: watch your thoughts. Listen for an answer. What does your new self want to do? Be curious about that self. Work to understand that self.  Be kind to that self.

Look out for Part 3: The Naysayers & Other Emotional Vampires

Read Part 1:  Reinventing Yourself After Losing Everything

May 12 is Fibromyalgia Awareness Day, But I’m 10 Years In.

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2016-make-fm-visible-fb-profile-pic-680x691

This Thursday, May 12th, will be a quiet day for me. It’s Fibromyalgia Awareness Day.  I’ll do what I usually do: strive to thrive, make it through another day, try to find ways to make a living, find balance, take better care of myself, wonder what the rest of the world is doing beyond my computer screen, etc.  Still, this year’s theme is “Your Voice Matters”, so I am writing today because I will likely not remember to do so on Thursday, whether by natural absent-mindedness or fibrofog.

However, there isn’t really much that I have to write about fibromyalgia today beyond the fact that it annoys me that WordPress’ word processor does not recognize the words fibromyalgia and fibrofog. Then again, it doesn’t even recognize the name WordPress, so perhaps I ought not to complain.

Well, I am ten years (by my symptoms) or eight years (by diagnosis) into this illness. Because of fibromyalgia, each day presents unique opportunities for me to learn more about myself, particularly my level of tolerance for the world around me and my position in it.  Even though I have had to make unexpected changes in my life and goals for my life, I am a far better human being because of it.

I cannot stress it enough: my illness has made me more human.

When you are usually on top, it is easy to spend your time looking down on others without ever realizing that you are doing it.  When you always have, you don’t understand the perspectives of those who do not.  When you only know yourself as competent, you cannot fathom the handicaps of others. When overachieving is all you ever do, you can never understand the satisfaction of mediocrity.

Fibromyalgia has taught me about my blind arrogance. It has shoved me off a very high platform and asked me to find my way back up.

I have accepted that challenge.

The challenge is neither to become blind once more nor to fight against fibromyalgia.  The challenge is to love, learn and live, embracing who you are, who others are, and especially who you decide to be.

On may 12th, if you have fibromyalgia or know someone who does, take a moment in your day to pause and appreciate what you have, who you are, and what you can do to make a difference in the lives around you.

Until Next Time,

D.

 

FibroArt Monday

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FIBROmyALGIA by Andrea Ninetta Hernandez. Image from http://fineartamerica.com/ | Click to visit their page to see more FibroArt for sale.

I had not idea that FineArtAmerica had an entire section devoted to FibroArt. There aren’t many pieces as of yet, but what is there is great so far.

Prices for prints range from 50€ to 156€. The above is a print by Andrea Ninetta Hernandez, selling for 54€.

 

Vlog & FMS | Funny ‘Ish’ People Say If You Have Fibromyalgia (“You Don’t Look Ill”)

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Snapshot 1 (25-Jan-15 17-36)

Over the years, I’ve heard a lot of interesting comments about fibromyalgia, whether directed at me or at others. Just for fun, I decided to put together a little video sketch about these experiences.

If you have fibromyalgia, then I hope you will connect with this video and have little laugh about our shared experiences.

If you don’t have fibromyalgia…then one of these character might be you. 😉

Enjoy!

FMS | FibroArt Monday! :)

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Image from Rhonda Moss on Pinterest

Image from Rhonda Moss on Pinterest

I came across this great image on Pinterest (pinned by Rhonda Moss).

It is truly fascinating to me that there are some people who do not understand that fibromyalgia is a chronic illness, i.e. lifelong…no end in sight…you have to live with it, etc., etc.

At the same time, it is important that we, who have FMS, do not become overly frustrated with such questions.  In my opinion, they stem from feelings of helplessness.  It is not easy to watch someone close to you (or not) go through such a difficult time.  In this era of information overload and quick-fix, I think that we have come to believe that everything has to have a readily understandable explanation and an easy method of resolution–unfortunately, it is not so simple with FMS.

So, to everyone who asks such a question: No, we’re not better yet.  No, we don’t know when we will be. 🙂

FMS | Consistently Embrace the Inconsistency of FMS (The 5 Gs)

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Image from fellow blogger Shauntee’s article “Dating Pet Peeves: The Invisible Third Person.” Click image to read.

 

I shouldn’t be writing this post.

No, seriously, I really ought to be writing something else, something relevant to advancing my studies or career or something else that I know is more important.

Even more seriously, typing this actually hurts. My hands, arms, chest, back, stomach, sides, thighs, knees, calves and ankles hurt. You name it, it hurts.  There are parts of me that are hurting that I didn’t know could hurt.  Then I remember:

This is the nature of fibromyalgia. 

 I am used to the pain. Thus, I cannot truly complain about it. This post is not about that.  It is about how to deal with the randomness of the pain or any other FMS symptoms, of being the unsuspecting victim of your own body.

So, What Do I Do?

Image from WOLB Baltimore’s article “Can Listening to Music Improve Your Health?” Click image to read article.

THE 5 Gs

GIVE (IN)| GET (ORGANIZED) | GRATITUDE  | GROW | GATHER

1. Give in / Give up –  Not on getting better, but on denying your experience.  What it basically means is accepting the reality of the situation. For a long while, I was really hard on myself whenever I had a significant flare-up.  I was constantly seeking to figure out when I would feel better, as though there were a timer ticking away and counting down to zero.  Give it up, that’s not the way it goes.

2. Get Organized –  Take a look at your obligations and figure out what can be put on the back-burner, what can be modified, and what needs to be immediately addressed.  The next step is to notify anyone who may be directly impacted by your current state.  Don’t leave others in the lurch just because you are ill.  Be clear with everyone about what you can do and when you can do it, if at all.  

3. Go for Gratitude –   The world didn’t collapse because you are having a flare-up. It’s not that serious.  Be grateful for what you can do, what you have already accomplished, and what you will be able to do.  Wallowing in self-pity will get you nowhere very, very quickly.  So, try not to be about that life.

4. Get Ready to Grow – Every moment, regardless of the value we assign to it, is an opportunity for personal growth.  Use this time to explore yourself. If you are able to do something, read something new.  If you aren’t able to do anything at all, listen to music or close your eyes and allow your imagination to take you on new adventures.  Do your best to remember that you are more than this moment. 

5. Gather Positivity – Whether alone or with loved ones, choose activities that reinforce the positives of your life, rather than focus on the negative.  I find it best to avoid discussing my current state.

Sometimes you may encounter people, I call fixers, who are very invested in solving your illness, and who will bombard you with seemingly never-ending questions–politely refuse to answer or simply avoid them.

Some people have limited patience for your illness, and these are people who you most definitely should do your best to avoid.

Negativity will only serve to bring you down, causing you to feel stressed and may severely impact your recovery time.  Gather around you people who bring with them a bit of sunshine, especially in the winter months. 

 

No Matter What, Keep It Positive While You Find Your Way Back On Your Path.

Until Next Time,

D

FMS | MyClaimSource: Know Your Rights in Filing Insurance Claims

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Image by Randy Glasbergen: http://www.glasbergen.com/

We’ve all been there, in one form or another: waiting for hours on end, listening to crappy elevator music or even being transported back to the 80s when Billy Ocean was a recognizable name, checking and rechecking the policy number on the front of our health insurance cards, and jumping with hope every time there’s that brief moment of silence, thinking that…the wait is over. It never seems to be.

It’s enough just being a person who knows the names of all the people in your local hospital, staff and patients…because you’re there on an almost daily basis, since your doctor can’t figure out your illness. It’s enough being poked, prodded, and loaded up with so many different medications every few weeks…because your doctor or your specialist our your psychiatrist doesn’t think whatever else you’re doing is working and you have to be fixed.

It’s really all enough. Then you find yourself, phone in hand, trying to explain your recent health escapade and why it isn’t your fault that you’re sick, and trying to help the person on the other end do their job and not make your life a living hell by telling you things like…you had a pre-existing condition that doesn’t qualify for medical reimbursement.

Image by Mark Anderson: Found on http://seriousstartups.com/

I’ve spent a lot of time dealing with the claim process, both in the US and in Italy. Heck, I’ve even delegated the task to my poor ex-wife (Hey, April!), because the whole thing just stressed me out…which only made me more and more sick. This is why I was so glad to have heard about MyClaimSource.com, a website devoted to helping any and everyone who has to go through the experience of filing a claim–Thanks, Hannah!

The site offers not just information but advice on how to navigate the sometimes treacherous waters of health insurance companies. Even if you don’t have to deal with filing a claim now, still check it out.

You never know when you might need the knowledge they have to provide.

Image found: http://www.thanetgazette.co.uk/

Below is an excerpt from the site’s main page:

“We founded Myclaimsource.com after several frustrating experiences filing insurance claims. When we needed help and advice on how to file a claim, the information just wasn’t there. Even when the insurance agents were well-intentioned and well-trained, they still didn’t seem to have the practical, “ground level” experience we needed to answer our questions. “Am I eligible to file a claim?” “Is this covered by my policy?” “How do I get start with my claim?” “How long should I expect to wait for an answer?” On this site, we have researched every provider policy we could find to try and answer these key questions for you. We’re also aiming to provide an open forum to connect those looking to file claims with people who already have, and who may be able to offer tips and advice on claim filing with a given provider. We hope that you find this site helpful, and that it can save you time and frustration as you go about the already no-fun task of filing your insurance claim.”

Remember, there is always a new path to be found…you just have to choose to follow it.

Until Next Time,

D.

FMS | PainMaps.com: A New Nerve Pain Resource Site

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Image from PainMaps: http://www.painmaps.com/

If you are like me, then living in a world of pain is just part of the package of your existence.  Pain is pain, no matter how it manifests or what it is labeled: Fibromyalgia (FMS), Chronic Fatigue Syndrome (CFIDS), Multiple Sclerosis (MS), Rheumatoid Arthritis (RA), Irritable Bowel Syndrome (IBS), Osteoarthritis, Neuropathic Pain, and Complex Regional Pain Syndrome (CRPS) as well as many others on the ever-growing list of syndromes and disorders.

I know first-hand that living with an invisible illness, which chronic pain of is, can mean being disregarded, misunderstood, or even blatantly being called a liar or crazy or whatever else makes someone else feel better for not being able or knowing how to help. This is one of the reasons why I shifted my blog’s focus to discussing living with FMS, because I understood that there were others going through similar experiences.

We, who are living with pain, need more community as well as resource outlets. This is why I was so glad when I received a message from Jessica Mendes, the founder of PainMaps.com, a resource site dedicated to providing resources for those who experience and those who want to understand chronic pain.

Mendes, who is a ghostwriter and intuitive translator, has been living with CRPS for many years, and began PainMaps as a way of providing outreach with an alternative touch; it’s about allowing ourselves to rethink how see, understand, approach, and care for pain, particularly (but not exclusively) in regards to CRPS, which is also known as Reflex Sympathetic Dystrophy (RSD).  It is a collaborative site that invites contributions for all those who would care to share their experiences and knowledge.

Harkening back to my Boston days, I’d have to say that I am wicked excited about this site, and hope you will be as well.

 Let’s build more community by venturing new paths! Visit PainMaps.com!

Until Next Time,

D.

FMS | Fibromyalgia Can Make You a Weather Psychic

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Image found: http://thefibrodoctor.com/does-the-weather-affect-your-fibromyalgia-symptom/ (Image links directly to article).

All right, I have decided to admit it:  fibromyalgia has made me a weather psychic.  

I am being absolutely serious here.  Having fibromyalgia has meant not needing to consult the weather report.  I know what the weather will be like the next day based upon changes in my FMS symptoms the day before. It’s that simple.

Although there is no specific reason found, the fact is that people who suffer chronic pain are able to sense changes in the weather before these changes are perceptible to others.  Some explanation by way of changes in air pressure. According to David Borenstein, MD, FACP, FACR, a rheumatologist and past president of the American College of Rheumatology, barometric pressure (weight of atmosphere that surrounds us) is likely what affects people the most, particularly people with chronic pain because “sometimes nerves can become more sensitized because of injury, inflammation, scarring or adhesions.”

Image found: http://blackwomenmillionairesevent.com

Q: Okay, I can predict the weather.  The symptoms still suck, so what can I do?

Well, according to the linked WebMD article above, there are measures that you can take to help you with dealing with the weather changes:

  • Stay warm (to help ease pain in cold weather)
  • Try to prevent swelling (if that is an issue for you)
  • Keep moving (even if it’s the last thing you want to do)
  • Improve your mood (while the changes can feel unpredictable and can make you nervous, you do have control over how you respond to these changes.  Work on smiling.  I do. Every day).
  • Realize that the pain is temporary (of course, temporary may be a while, but it is still temporary, so keep smiling).
  • Don’t give up (This is my added thing. Look for the positive in the moment).

Image found: http://msbmore.wordpress.com/ (Check out fellow blogger: Ms. B. More!

Q: I was newly diagnosed/ I’m not sure if I get it–I don’t have arthritis or any old injuries.

If you have been recently diagnosed, then welcome.  It’s good to know that it’s not you and you’re not crazy. If you don’t get it for whatever reason, then this may be why:

  • You’ve not had the chance to track your symptom patterns on multiple levels.

What I mean is that when you are first dealing with FMS symptoms, they can be overwhelming and seem inexplicable.  You may just want to end the pain or get sleep or stop feeling nauseous or be migraine-free, etc.

You may not think about all the factors that may be contributing to your symptoms being more or less aggravated, such as food, activity level, vitamin deficiencies, allergies, recurrent exposure to stress (work/relationships/news/travel), weather and other environmental factors, etc.

Fibromyalgia symptoms are unique to the individual, which is why I think it can take some time to understand just what is affecting you how, and then what to do about it.

Changes in the weather/season, however, is something that many people with FMS have recognized as a contributor to increased symptoms.  These changes can mean:

  • Change in Sleep Cycle
  • Change in Circadian Rhythm
  • Pro-inflammatory Cytokines

For more detailed information on these changes and the specific types of weather changes that can aggravate symptoms and lead to flares, read “Does the Weather Affect Your Fibromyalgia Symptoms” by Dr. Rodger Murphee at TheFibroDoctor.com

 

Believe it or not, predicting the weather is really just your body giving you a warning sign.  It’s letting you know CLEARLY that you are potentially heading into a period of flares, so it is best to take preventative actions.  That’s all there is to it, at least in my book.

Learn to enjoy your psychic ability, disturb your friends with your accuracy, bring it out as a conversation starter or a topic changer…Whatever you do, smile about it, laugh about it, be with it.

It’s your body, you must live in it.  So, live happily as you walk your path.

Until Next Time,

D.

 

P.S.  ATR Challenge (Day 25):  What is right is my taking the time that I need, my accepting the support I receive, and my smiling through both pain and joy.

 

 

FMS | Yoga in Bed & ATR Challenge Update!

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Image found: http://blackyogis.tumblr.com/

I have been a seeker and I still am, but I stopped asking the books and the stars. I started listening to the teaching of my Soul. ~ by Rumi 

Today, the yoga mat looks too far away–to be honest, for two days I denied the existence of my mat…What mat?–and I don’t know that I feel like excessive movement is an option for me today, much like yesterday and the day before that.

Still, I am into opposite action, so I unroll the mat.  Like the walls and most everything else in my room, the mat is  pink, a nice loving colour, and I need some unconditional love right about now.

Image found: http://blackyogis.tumblr.com/

Fun fact: I’ve practiced yoga since the age of 3

I take a moment just to be in tadasana, listening to and regulating my breathing while centering my core.  Today, given my level of pain and fatigue, I will only do a modified Surya Namaskara or Sun Salutation–slowly.

—-

 

So, Why Yoga? And How Does FMS Fit into All of This?  

As I’ve mentioned in an earlier post, yoga is extremely useful for people who suffer from chronic illnesses, which would include fibromyalgia.

Just search online for yoga and fibromyalgia and you will see the many sites that have dedicated a page or two to discuss the benefits of yoga.  One of the first is a 2010 article by WebMD that discusses a study done on yoga and women with fibromyalgia.  Here is an excerpt:

Women with fibromyalgia can reduce symptoms of the disease and improve their function by practicing the mind-body techniques of yoga, a new study says.

Researchers in Oregon who enrolled 53 women aged 21 or older for the study say that women who participated in a “Yoga of Awareness” health program showed significantly greater improvement infibromyalgia symptoms…

Women in the “Yoga of Awareness” class participated for eight weeks in a program of instruction and exercise.

Classes included 40 minutes of gentle stretching poses, 25 minutes of meditation, 10 minutes of breathing techniques, 20 minutes of teaching presentations on using yoga principles for coping, and 25 minutes of group discussions, in which participants talked about practicing yoga in their homes.

Image found: http://blackyogis.tumblr.com/

So, What Can You Do?

Well, I always believe in meeting yourself where you are.

  • Locate and Assess your level of pain.  What and how much you can do depends upon your understanding of where and how severe your pain is.
  • Ask yourself lots of  questions, like “Can I  leave the house? Can I get out of bed?”
  • Depending on your answer, use the yoga resource that is most beneficial to you.  If you can go to a recommended class, then go.  If you cannot, YouTube and Amazon.com could serve as potential resources–of course, use your own judgement to decide what practice is safest for you to do.    

 

Below is an example of a resource that may be useful for you if you are experiencing low mobility, i.e. getting out of bed is not an option.  It is the Yoga in Bed Morning Stretch Series; there are 6 videos durations ranging between 6-11 minutes.

Good luck!

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ATR Challenge Update: Days 12 & 13

Wow, it continues! 🙂  Yesterday, I was unable to do much of anything, but I think I have already made up for it today.

So, What is right in my life?

Increasing Self-Love |Improving Self-Efficacy | Believing in Self-Worth

Connecting with the New| Reconnecting with the Old | Externalizing Love

Extending Help | Breathing Sunshine | Sleeping to Rain

Watching Cartoons | Laughing with my Child-Self | Laughing with my Pain

Laughing with my Hope | Laughing with my Sincerity | Laughing with my Life

Discovering Happiness | Enjoying Happiness | Accepting Sadness

Comforting Anger | Welcoming Mindfulness | Welcoming Internal Peace

Welcoming solitude | Welcoming togetherness | Welcoming Simplicity in

Everyone | Everything.

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In essence, it’s all good, because I believe and know it is–even if I’m stuck in bed. 😉

Until Next Time,

D.