Fibromyalgia & Work | Understand Your Limitations, Exceed Your Expectations

Image from MadameNoire.com. Click to read their article, "The 'Itis: Foods that are making you sleepy at work"

Image from MadameNoire.com. Click to read their article, “The ‘Itis: Foods that are making you sleepy at work”

This is hardly breaking news, but having fibromyalgia sucks. Indeed, along with other chronic illnesses, fibromyalgia is quite adept at throwing a monkey wrench into even the best laid plans. In my opinion, this is due to the unpredictability of the onset of symptoms and the negative psychological impact that that unpredictability promotes. If you have fibromyalgia, it may seem downright hard to plan for the moment, much less the next day!  So, what does that mean for those of us who are working or looking for work?

What I’ve come to understand through personal experience is that the people surrounding me can fall into one of six categories: 1) the knowledgeable and supportive, 2) the knowledgeable and enabling, 3) the knowledgeable and uncaring, 4) the ignorant and dismayed, 5), the ignorant and dismissive, 6) the ignorant and plaintive. Sometimes people may bounce between categories.

What does any of this have to do with work, much less the title of this post? Simple: if you have fibromyalgia and are still working or looking for work, you must be prepared to encounter these people.  You  must understand how what you do or don’t do will be viewed by others.

I know, for a fact, that there are some people who see me using my illness to gain unfair advantage (ignorant/plaintive), or see me as being lazy when I am in the full swing of flare-up (ignorant/dismissive). That’s my reality. Still, there are other people who see my illness as their opportunity to be my personal saviour (knowledgeable/enabling), or see my illness as a moment to share their personal grievances (knowledgeable/uncaring). Of course, there are those precious few who take the time to learn about the illness and ask how the can be of help (knowledgeable/supportive), or are willing to ask me about my illness and feel tremendously sorry for my situation (ignorant/dismayed)–not that I require a pity party.

Hopefully, your workplace environment or potential employer is/will be filled with the latter two.  I’m crossing my fingers for you and me.

Since the onset of my illness, I have done my best to understand how to continue achieving my goals, being a productive member of society, and improving my overall well-being.  It’s no simple task, I assure you, However, I am the passionate, persistent, patient, and people-person type, so I believe in achieving the perceived impossible.

As I look for work, putting out my positive, law of attraction, vibes into the universe, I am holding strong to a new rule: understand my limitations, exceed my expectations.

I cannot pretend that I do not have fibromyalgia.  I cannot lie to a potential employer and promise what I know to be literally impossible.  What I can do is:

  1. Examine myself carefully,
  2. Celebrate the progress I’ve made,
  3. Write down my strengths which will be an asset to any company,
  4. Explore my weaknesses and look for jobs that diminish rather than promote them
  5. Express gratitude for where I am right now in my life, including what I do and don’t have.
  6. Create a Vision Board to “see” where I’m going (perhaps this should be first)
  7. Wish the best for others who do or don’t have my illness. Being jealous of the progress of others will not help you progress.
  8. Work quietly on improving skills that may come in handy.
  9. Welcome positive suggestions and support, even if it doesn’t seem like something that may be initially interesting to you, you never know…so remain open.
  10. Consolidate yourself (yes, it’s an odd choice of words, but the best for me, I assure you).  Pull yourself together as best you can.  It’s easy to feel fragmented when you have a chronic illness.  Sometimes you may even see yourself as two people who are warring over the same body: the healthy you vs. the unhealthy you.  It’s time to pull all your parts together to make a stronger whole.

Don’t dismiss your skills, hobbies, talents, whatever.  They may have the potential to get you to take the next step on your journey to living successfully with fibromyalgia.

Until Next Time,

D. 

P.S. I’ll keep you updated on the job search. Wish me luck 😉

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.

Fibromyalgia: Let’s Not Beat Ourselves Up!

DUI of negative thoughts

I woke this morning tired.  Mind you, I had only fallen asleep four hours before.  It’s a hazy morning, humid but tolerable with an intermittent breeze. I’m annoyed. Why? Because I’m tired, because it’s humid, because my mood took a slight dip while I wasn’t paying attention.  My first thought: I suck.

It’s not an uncommon thought for many, even if worded differently.  It’s the thought that rises when you believe that there is something you could do but haven’t, or that you have done but shouldn’t, etc.  In this moment, I suck because I’m tired and feeling lazy due to the humidity.   I suck  because my joints and muscles ache and I would prefer not to move.

Of course, the reality is that I do not suck.  Actually, I’m quite a lovely person, who tries her best at all times.  I just happen to have this type of response every now and again when it comes to dealing with my fibromyalgia.  It’s also a consequence of being perfectionistic.

So, how will I get myself out of this funk?  And how can you?  Well, I’m giving myself the proverbial reality check.  There are somethings that are within my control and beyond my control, including my body, my environment and the weather. What’s the point of beating myself up? There is none.

Putting myself down is a slippery slope that leads only to lowered self-esteem—and I’m not about that life.  The life that I’m about is one that lifts and heals the spirit, the body, and the mind.  I’m working on transforming that I suck statement into something more self-empowering, but first I have to confront with what’s really going on, take stock of my reality, and take action to improve my day.  I hope you will too! 🙂

In the meanwhile, check out this great personal article by analyst and professor Jane Boylton, Psy.D., M.F.T., “How Reality Checking Can Save Your Life & Your Dreams: You Can Easily Avoid One Sure Way to Suffer”  (PsychologyToday)

 

Until Tomorrow,

D.

Fibromyalgia & The Loudness of Absence: 3 Steps to Be More Present In Your Life

don_t-be-a-slave-to-writer_s-blockI think one of the scariest aspects of having fibromyalgia is the loss of control over the one thing that, if nothing else, you “should” have total control: your body.

It’s as though the bargain that you struck with your body once you left childhood suddenly becomes null and void. It’s like you left the car dealership and get home realizing you’ve been sold a lemon.  All right, maybe it’s not like that, but you get the idea. Something feels very unfair about all of this–and it’s true.

Fibromyalgia, like any illness, doesn’t do fair.  It doesn’t know how to play nice, and it’s quite selfish.  That’s the way it is.  Still, you have to live with it.  No matter how much it takes away from you. In fact, it can (and will) take so much away from you that you no longer know/understand who you are.

Fibromyalgia assumes and consumes your identity until you no longer exist.  I know. I’ve lived through it. I became absent in my life and from myself.  I allowed fibromyalgia to define me. Not. Any. More.

It’s easy to get bogged down in the misery of this illness: its randomness, its painfulness, its isolation, its depression.  The desire to withdraw from self and society can feel overwhelming, and I know many (including myself) who have retreated, in one way or another, from the world. Let’s stop that.  Let’s take back what is rightfully ours, Let’s reclaim our bodies and our minds!

It’s only a matter of taking it one step at a time.  So, today I’m sharing with you the 3 steps that I have taken and still take to be more present in my life.

  1. Remain Opento yourself and to possibilities that life has to offer.  Fibromyalgia changes you.  Be open to that change, rather than fear it.  There is a lot that having fibromyalgia will teach you about what it means to be alive.
  2.  Challenge Yourself Daily – Think fibromyalgia has made you into a sniveling, whiny, hell-hole of a person?  All right, well, that was yesterday.  Who do you want to be today?  Challenge yourself to be a better version who you were. Tomorrow is a whole other day, so focus on today, the here and now.
  3. Make Contact – No matter what, reach out to someone every day.  Call or meet a friend, check in with family, chat on an online support group or a social media network.  Reach out. Staying isolated with your illness is a sure path to further problems, psychologically and thus physically.  If you can, get outside and take a walk…even if it is for a few steps.  Taste the air outside, see the world around you, celebrate that life is happening and you’re a part of it.

I cannot promise you that taking only these 3 steps will change your life. They are, however, a good way to start doing so.  Remember there is a difference between the verbs to have and to be.

You have fibromyalgia. You are not fibromyalgia.

Let neither yourself nor anyone else define you by it.

Try every day, taking one step at a time along your path.

Until Tomorrow,

D.

Fibromyalgia & the Perfectionist: 3 Steps to Being a Perfectly Imperfect-Perfect You

Image from GIS

Image from GIS

The title is a tongue twister.  I dare you to say it fast 7 times. 

What happens when a perfectionist develops fibromyalgia? Well, I’ve spent the past 8 years learning the answer.

I don’t often speak or write about being a perfectionist. In fact, embracing imperfection, especially when it comes to body image and fibromyalgia, is often at the core of my blog posts, including this one.  The topic, however, has been on my mind over the past month as I transition from being a student to being gainfully employed. 😉

So, what have I learned over the past 8 years? Well, I won’t summarize it in this post.  One day , however, I’ll probably write a book about it…the subject feels that heavy.  For today, I wanted to share with you 3 steps that I’ve taken to being perfect at being imperfectly perfect.

3 Steps to Being a Perfectly Imperfect-Perfect You

  1. Chuck the Planner–Literally. Toss that thing in the trashcan…but do it perfectly.  Instead, invest in notepads and write anything you need to do for the next day/moment/whatever and stick the note somewhere you are likely to see it and, thus, remember, e.g. on your computer, mirror, refrigerator, front door, whatever. Just make sure you find the perfect spot for them.
  2. Downsize Your Goals–Thinking about hiking Mt. Everest tomorrow? Well, how about downsizing that to hiking your local trail today? What I mean is, focus your thoughts on doing what you can right now, in this very minute.  I know that my perfectionism has been both a great help and a massive hindrance to achieving goals.  Of course, I still have goals.  However, I have modified them by breaking them down (mentally) into smaller achievable steps.  Also…I now focus on enjoying the process instead of the product.
  3. Ignore Everyone–Meaning, ignore their opinions.  If there is one thing I know about being a perfectionist is that the opinion of others really mattered to me. I would choose to do something or not based upon how others would respond. Of course, this can be a good thing…but it can also be very detrimental, especially if you are creative–what is it that you haven’t painted, written, played, done etc. because you fear the response of others?   Well, right now, this very second, is the time to say enough is enough and pick up that paintbrush, pen, sheet music, etc. and do what you want to do.

Bonus Tip: Learn to listen to your thoughts, feel your feelings, heed your body, embrace your resilient spirit.  You won’t be perfect at first, and you will be judged (don’t worry…they’re not perfect either). However,  if you keep working on it, you will become a perfectly imperfect-perfect you.

Hey, this life is in this moment. How do you want to spend it?

Looking for more on letting go of perfectionism? Read this.

Until Tomorrow,

D.

FMS | The Necessity of Positive Self-Value

DSC001732Just a quick thought for today.

Remember that taking care of yourself, recognizing your strengths, working on your weakness, celebrating your small steps (and big ones) are necessary part of maintaining positive self-value.

It’s easy to get caught up in the what you can’t do or the  what you should do, instead of looking at what you have done and what you want to do.

Take a moment before the end of this day to check in with yourself.  Challenge yourself to acknowledging your positives, and then see how those positives can be extended to touch the lives those around you.

Until Tomorrow,

FMS | It’s TIme to Move In WIth Your Inner Child

Image  from "Kids Have No Prejudice" Documentary. Click to watch on YouTube

Image from “Kids Have No Prejudice” Documentary. Click to watch on YouTube

Fibromyalgia can suck the very joy of living out of you.  Seriously.  Sometimes you feel like there Is nothing to enjoy in life. And I  would say that it is an illness that can easily have a comorbid diagnosis of depression, which is only deepened by the somewhat unpredictable nature of the onset of symptoms, especially in the first couple of years when you are just beginning to learn about it.  In other words, fibromyalgia Is no walk in the park.

So, how can you deal with this lack of joy?  Well, I say the answer lies in beginning a conversation with your inner child.  Regardless of whether or not your inner child is healthy or hurting, they deserve to be expressed (especially if they are hurting).  Nurture your inner child.  Ask her or him what she or he would like to do today.  What simple pleasure would make your inner child smile?  Try answering that question, and see where it takes you.

Until Tomorrow,

D.

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

Featured Image -- 5348

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.

 

Daily Blogging & Writing Fearlessly

On Via Fori Imperiali

On Via Fori Imperiali (May 2015)

I’m almost certain that many writers spend time thinking about how to write more, why they aren’t writing more, when they can write more, if they should write more, if they can write more. I’m no exception.

Lately, I’ve been writing, but not publicly. I have an awful tendency to stop writing because I believe I have nothing of interest/importance to state–usually, that translates into “I feel like crap about myself in the world.”  I recognize that writing about true feelings/thoughts not filtered through psychobabble scares the living daylights out of me.  Seriously.

It is a scary thing just to write “I feel…” and not add something about Freud or CBT or DBT immediately before or after it.  What would it mean to simply state my feelings, my thoughts unfiltered, uninhibited in my own little virtual space?  Who knows. This, however, is the starting point.

It’s a promise to myself. Every morning, I will write something, anything on this little blog of mine. It may interest you. It may bore you to tears.  The point, however, is that I am writing what is honest/authentic/true for me. I hope you’ll continue to give me your support.

Also, I an starting a health journey daily vlog upon my return to the US.  It will run from May 25-August 15, and will be tracking my progress with taking better care of my overall (but mostly physical) health, including diet, exercise, hair, skin, etc. I am really ready to commit to a healthy vegan and natural lifestyle, and I would like to document that process. So, wish me good fortune on that as well.

Sometimes it’s when we are about to experience enormous change that we truly recognize the direction in which we are heading.

Until Tomorrow,

D.

Vlog | Fibromyalgia & Travel: You Must Be Your Number 1!

Thank you so very much, everyone, for sticking with me both on my blog and on my YouTube channel! 🙂