Fibromyalgia & the New You: How to Begin Restructuring Your Life After a Loss of “Self” (Part 1)

hyperrealism,art,swim,swimming,relax,

A decade ago, the word fibromyalgia didn’t exist in my vocabulary.  To be honest, my relationship with illness was that I was never ill in any serious way.  I lived to work and study, which eventually jeopardized relationships.  That way of functioning, however, was what I was taught growing up.  You were suppose to disregard all else in favour of work, whether physical or mental.

I saw my body and my mind as tools to be used relentlessly.  I would work from 6 a.m. to 2 p.m. at one job, then jump in my car, drive one hour, and then work from 3 p.m. to 11 p.m. I worked every holiday–a habit that I did not break until I moved to Italy. I volunteered to work when someone else didn’t want to, or called out, or whatever.  I made myself overly reliable, and everyone knew they could ask me to step in to help at any time.

Work trumped all else.

So, what happens when a person who self-defines through excessive work (“workaholic”) loses the ability to overwork or even work?  In Rome, we say sono distrutta/o (“I am destroyed”) when something happens that is overwhelming and/or devastating.  I think this expression is apt: you feel a huge part of you has been destroyed.  There is a shattering of the self, a destructive blow to one’s inner worth.

However, the blow doesn’t happen just once.  There are many blows, one for each thing you realize that you can no longer do.  Moreover, the blow aren’t just internal.  You receive external blows that land in the form of judgement, dismissal, and utter disregard…even from the people for whom you once bent over backwards to help when you were well.

That, sometimes, isthe harsh reality of having this illness.  Some people may begin turning their backs on you as they come to realize that you can no longer do what they want/need.  Although such experiences can hurt, they offer you the great opportunity to begin understanding who your real supports are, who you can really trust, and where you actually stand.

Knowing where you stand with yourself and with others, I think, is the one of the most fundamental aspects of beginning to restructure your life after any sense of loss of “self.”   In an earlier post, I wrote about reality checking, i.e. making certain that you understand what is happening in you and around you. Knowing where you stand with yourself and with others is, in essence, reality checking.  One might even call it being mindful to self and environment. Regardless of what you choose to call it, simply do it.

First, take stock of you, what’s going on within you.  Open yourself up to a non-judgmental inner dialogue, and encourage yourself to express all that is challenging you when it comes to your illness and the impact that it has had on your life thus far, or even what fears you may have about the future. Be honest with you.

Second, speak directly with those around you. Open yourself up to non-judgmental external dialogues, and encourage others to express to you how your illness challenges them, what scares them about it now and what they worry about in the future. Of course, make sure you express your thoughts and feelings as well.

Remaining in a non-judgmental stance is vital, in my opinion, to understanding 1) where you are, 2) where you are going, and 3) where you might prefer to go instead. It keeps you here and now, but with a distance that allows for some objectivity about your life.

It’s true that having fibromyalgia can suck the life out of you. However, you do not have to allow fibromyalgia to suck you out of life. Yes, things are different now. Yes, you have no idea how it’s all going to work out.  Yes, you are scared.  All of those things are okay. Your feelings are you feelings and they should be owned you.

Still, having fibromyalgia isn’t the end of the world.  It may be an ending of a chapter of your life as you knew it.  And now you can write a new chapter.

Until Tomorrow,

D.

FMS | Fibromyalgia is Not the Enemy. Your Attitude Is.

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This is what we need to aim for every. single. day.

Beyond medical research, I spend a lot of time reading personal stories of people who have fibromyalgia.  After all, I have the illness, and it feels good to have a sense of belonging. However, there is a problem.

What I’ve noticed is that many of these stories, including some of my own, focus on the (for lack of a better word) negative aspects of the illness.  There is nothing wrong with that. Of course, we all need a place to share our grievances, our challenges, and our pain.  This can help those without fibromyalgia understand a bit more about our experiences with the illness.  Sharing, however, the negative of our illness is not always helpful…to us.

What I mean is: isn’t it about time that we share the positive? Share our successes?  If nothing else, in both my personal and professional lives, I learned that focusing on what works helps us to feel better about ourselves and our circumstances.  (Also, reading about the success of others in overcoming their challenges is helpful to those who are struggling.)

For example, let’s say you’ve been waking up every morning (if you even slept) and have felt so tired that the idea of getting up is too much.  Okay, that’s fine. Now, instead of focusing on feeling so tired, how about focusing on the simple pleasure of I woke up today. Perhaps that may seem a bit morbid.

The reality is, however, that if we can take a moment to focus on what is good/positive/working, then what is bad/negative/broken begins to matter less.

So, to give you a boost, I thought I would share with you my 5 steps to feeling motivated for each fibromyalgia day:

  1. Appreciate. Every morning and for the rest of my day, I take moments to simply express gratitude for the simple things in life, whether internally or externally or both. The sun is shining. I am breathing. The birds are singing, etc.
  2. Celebrate. Even if I am stuck in bed all day long, I celebrate myself and my achievements for the day.  Perhaps the only achievement I can point to is my self-care, i.e. not pushing myself beyond my limit and not beating myself up because I can’t do what others can.
  3. Life-dream. Okay, so it’s a rough day today, but guess what? Tomorrow might just be better, and what do you want to do? I take time to make small and big plans for my future. I keep in mind something that YouTuber CharlyCheer expressed in one of her videos: if you can spend 10 minutes today working on a goal, then you are that much closer to achieving it.  So, dream and dream BIG.
  4. One-step.  I take the foot-in-the-doordoor-in-the-face compliance strategies. What does that mean? I negotiate with myself. I ask myself to do something either so small (foot in the door) that I know I can do it, or I ask myself for something so grand that I know I will reject in favour of something smaller. In essence, I force myself into complying with taking a positive action.  What the video below.
  5. Laugh. I spend a great deal of time laughing.  Sometimes it is because of something I make myself watch (cartoons, comedies, etc.), sometimes it’s a memory of something I did (I can be very clumsy), or sometimes it’s listening to or reading something funny (whimsical music, comic strips, joke books, etc.).  The point is, I force myself to experience a positive emotion. Check out DBT technique  Opposite to Emotion Action.

You know, having fibromyalgia does not have to suck.  It’s true sometimes it does, and when it does…man, well…you get the idea.  Fibromyalgia is just an illness. It’s not the bogeyman, nor the devil or some demon meant to torment you.  It’s nothing to really be sad about, in my opinion.

Yes, your life has changed.  However, focus on how you can compensate for those changes/challenges.  Make having fibromyalgia a positive for you.  When people say, “I’m so sorry you have fibromyalgia” (I hear this a lot), respond with “I’m not! It’s one of the best things that has happened to me and has helped me change my perspectives on life!”

And that’s the truth. Fibromyalgia does teach you many wonderful things about life, especially because it forces you to slow down, to pay attention, and to take care.

Until Tomorrow,

D.

 

Raw…

DSC00535aFlood water

over,

wash away

debris,

mind focused

on

all impurities

of

all impurities.

War spelled

backwards.

I was,

she

was, he

was,

it was–

imperfect

past tense

in

German. I’m

learning

again…again.

-db

[Reblog] WebMD Fibromyalgia Community: Accepting Fibromyalgia

[Reblog] WebMD Fibromyalgia Community: Accepting Fibromyalgia

“When you’re diagnosed with fibromyalgia, it can be difficult to accept that you’ll have to live with fibromyalgia for the rest of your life. It’s hard to cope with knowing that on some days you may not be able to complete even the simplest, everyday tasks.”

In the beauty of our imperfections…

(Disclaimer:  This posting is written in generalized terms.  It is not to meant to state that all men and all women believe, think or act in the following ways.  Rather I have written in this manner to emphasize the significance of the issue at hand.  Thus, please understand that I am quite aware of the shades of grey in how men and women relate to one another.  Watch the videos, read my words, and contemplate.  Many thanks in advance.)

Think again, if this is all that you believe or understand about women (or yourself)…




or what we (or you) must be or become for you (or others)….


Learn what is real… 

Learn who women really are…


 and what makes us beautiful…


what makes us worthwhile…


and the perfection in the beauty of our imperfections…

A very belated Happy International Women’s Day(8th of March, 2012)… Celebrate a woman today, and if you are a woman, then celebrate yourself!

Until  next time…

Best,

D.

P.S. : Don’t worry, your time is coming… 

And men, while you are busy worrying yourselves about how we, women, ought to look, why not begin to consider your own reality and the mounting body image issues that are to be your lot…  because certainly you realize that the real image of yourselves and the image presented by the fitness and beauty industries certainly do not agree.  The disparity will only increase as time presses on…

The Reality…. 

The Expectation…