FMS | The 3 Ds: Disappointments, Decisions, and Determination

“Watch your thoughts; they become words. Watch your words; they become actions. Watch your actions; they become habit. Watch your habits; they become character. Watch your character; it becomes your destiny.”― Lao Tzu

I’ve begun writing another chapter in my life.  Perhaps this chapter ought to be called Sticktoitiveness”.  Why? Well, I like the sound of the word, it makes me smile, and…

Sticktoitiveness is defined as a “dogged perseverance; resolute tenacity“, which has reemerged as a theme/personal quality in my recent life.

It’s one of those many things that you may have had to cast aside, in one way or another, as you learned how to live with a chronic illness, such as fibromyalgia.   It’s also something that, in my opinion, you should never cast aside when you are living with a chronic illness, such as fibromyalgia.

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The 3 Ds

Living with a chronic illness, means living with constant internal and external changes.  The changes you undergo will create havoc in self-perception/self-image, in relationships, in goal-setting, in employment, in pacing achievements, and in even cooking pasta (I threw that in just to make sure that you were still paying attention). 😉

In other words, having a chronic illness can mean taking life moment by moment and doing your best to prepare for whatever shifts occur–it’s not an easy task.

I’ve done my share of explaining and lamenting the challenges of having fibromyalgia, so that’s not what this post is about.  If you’re interested in learning the depths of the difficulties, however, you can look in my archives.

This post is about why you, both people who are living with a chronic illness and those who are a part of their lives, must accept and live by the 3 Ds.

What are the 3 Ds?  No, this isn’t about multiple third dimension.  This is about accepting: disappointments, decisions, and determination.

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Disappointments, Decisions & Determination

The reality is that, when you are living with a chronic illness, you will face setbacks more often than not.  They are a part of the package.  They are also the first D, i.e., disappointments.

You will experience disappointments like never before… Seriously.

Especially, if you attained the status of ‘responsible adult’, then disappointments (particularly in yourself) will begin to take on a whole new meaning, because others may be dependent upon your well-being for their survival.

Decisions are an everyday part of life, and are the second D.

Decisions, when you have a chronic illness, can no longer be a straightforward and static process. Why? Because decisions can never really be wholly independent from your (unknowable) physical status.

This leaves the third D, and the most important, determination,

If nothing else, I have come to understand that you must remain determined in seeing your goals through to the end, whatever they are and regardless of your chronic illness.  

Yes, having a chronic illness can drag you down, cause you to despair, and generally make living feel less than worthwhile I am not denying that. Certainly, too, there are goals that may need to be altered or even utterly discarded.

Still, I am stating that if you focus on your goals with “dogged perseverance” or “resolute tenacity”, in other words sticktoitiveness, then your goals can serve as a way out of the darker aspects of having a chronic illness.

No matter what, stick to accomplishing whatever goals make your life have meaning, make you happy, and make you feel sane when everything else about you feels less than so.

Until Next Time,

D.

 

[Reblog] About.Com: Hair Loss & Fibromyalgia

[Reblog] About.Com: Hair Loss & Fibromyalgia

“Before I was diagnosed with fibromyalgia, I was sure I had lupus. The symptoms are extremely similar, and one of them that really had me convinced was hair loss. Every time I washed my hair, the tub was covered in it. Still, when I have flares, I leave more hair behind than my husband, who’s thinning a bit. (Good think he’s a saint so he won’t mind that I mentioned it!)

Eventually, I found out that hair loss actually is a fibromyalgia symptom – it’s just not one that typically makes the brief symptom lists you come across when you’re frantically scouring the Internet to figure out what’s wrong.”

I was glad to have found this article, because I experienced a very strange occurence this past week:  my hair began to shed like crazy.  A part of me was terrified.  Another part of me was amused.  Still, there was another part of me that said, “Oh, whatever.”  Still, the excessive hair shedding remained on my mind.

Anyone who has known me for a long time, knows that I have taken care of my hair since age 18.  I kept my hair natural, wearing loc’s for 14 years. Even since cutting and undoing my loc’s, I have continued to keep my hair in its natural state and have begun using natural products to take care of it.  In other words, I am very particular about my hair.

Of course, when I noticed my hair shedding, my mind went to the fact that hair loss (alopecia) is common for Black women. Still, that did not seem to be the correct answer.  Then I began to think about my levels of stress over the recent time period and I recognised that I had been highly stress (and still am).  Then I thought about my fibromyalgia, and came across the linked article.

I had no idea that hair loss was among the symptoms that one could experience, thus I am grateful for having found this article.

Until Next Time,

Diedré

[Reblog] WebMD Fibromyalgia Community: Short-Term Memory Problems

WebMD Fibromyalgia Community: Short-Term Memory Problems

“One of the biggest challenges facing many people with fibromyalgia is — wait — what was I going to say?

Short-term memory problems can be embarrassing, frightening, and even dangerous for people with fibromyalgia. One community member asks for help as she’s noticed her memory deteriorating. “I have had two experiences in the last week where I couldn’t remember what the inside of my house looks like!” she laments.

A chorus of replies quickly tells her that she’s not alone…”

“The Buddha said…”

“The Buddha said that we are never separated from enlightenment. Even at the times we feel most stuck, we are never alienated from the awakened state. This is a revolutionary assertion. Even ordinary people like us with hang-ups and confusion have this mind of enlightenment called bodhichitta. The openness and warmth of bodhichitta is in fact our true nature and condition. Even when our neurosis feels far more basic than our wisdom, even when we’re feeling most confused and hopeless, bodhichitta—like the open sky—is always here, undiminished by the clouds that temporarily cover it.” – Pema Chödrön, from The Pocket Pema Chödrön

This quote by Pema Chödrön resonated with me today and I hope it will do the same for you.

Also, I wanted to share with you links to the two books that are most dear to me and they are both by Pema Chödrön:  When Things Fall Apart and The Places That Scare YouBoth of these books remind me of my place in the universe and how to take each step forward even when my path is seemingly covered by impenetrable darkness.

There are, have been, and will be moments in our lives when it seems that nothing is going as we had hoped, when we feel our hands are bound by some unknown and unseen force, when we despair of our existence and our present feels profoundly heavier than both our past and imagined future.  Even in these moments, we must maintain our faith in the concept of limitless possibilities and probabilities, in our ability to shift our thinking and thereby shift our emotional space.

In essence, we can change our reality…one step at a time.  After all, no matter the duration of our winter, there will always be a spring.

So, let’s keep our chins up and eyes forward while trusting in our abilities to make it through every single day until we arrive to the places, in which we aspire to be.

Until Next Time,

Diedré

FMSpeak-English Dictionary: When I Say…I Mean…

6,909 distinct languages.

There were six thousand nine hundred and nine classified distinct languages in the world as of 2009.

If we add to that body language, the various dialects, conlangs (ASL, Klingon, Na’vi, and Tolkien’s many languages), jargon (legal, medical, craft, etc.) and internet speech (inclusive of emoticons and text-speak), it is possible to see that human beings have spent a great deal of time and effort attempting to communicate with one another.

Still, we manage, oftentimes enough, not to understand each other.

Even though we hardly need another language, I propose to add another “speak” to the mix:  Fibromyalgia|Speak or FMSpeak for short.

Why?  Because I realize that there is some clarification needed for certain expressions that I use when discussing my well-being.  So, I thought I would share some of my entries here.   My hope is that it will be useful (and perhaps amusing) for you.  Here we go.

The first 5 entries: 

When I say…

  • “I am tired.”

I mean…

  • “My body feels as though I do not know how I could possibly move it another inch.  My brain isn’t forming thoughts clearly.  My eyes are not sure when the last time they closed or opened themselves was.  Even if I had/have the opportunity to sleep, I can’t sleep.  I am too exhausted to move, sleep, think, talk, cry, laugh, care, be, feel, eat, drink, deal, know, want, need…Please, don’t ask me anything else about my health, because if you do, then I just might fall apart.”

When I say…

  • “I am not well.”

I mean…

  • “Every movement makes me nauseous, tired, hurt, cry, angry, desperate, and scared of what will come next.  Every thought is no thought, and I’ve probably forgotten your name or what we were last talking about when we met.  Every minute feels like I am being pierced by hot needles all over (or, if I am lucky, just some parts of my body).  My brain is splitting apart and I am sensitive to light, sound, smell, motion.  Please, don’t ask me anything else, because it will be too much and I am barely holding myself together.  I want to cry and sometimes I will…if you keep asking me if I am okay.  I am not, and you already know that.”

When I say…

  • “I am sick and tired of being sick and tired.”

I am mean…

  • “Why me? I thought I was feeling better.  Why won’t this go away?  Why can’t I get it (medication, work, relationships) right–why does my illness get in the way?  Please, don’t ask my anything else, because I won’t be able to deal.  (See last two entries).”

When I say…

  • “No, I can’t.”

I mean…

  • “No, I can’t, physically and/or psychologically. What you are asking of me is counterproductive to keeping myself well. The conditions are inauspicious.  It’s winter.  I haven’t slept in four days (literally). It’s been raining and dark for days.  Walking is a challenge–smiling, too.  I don’t want to be around others when I am like this.  I don’t want to bring others down with my illness…and you can’t bring me up, because you can’t make me better.  It’s impossible at the moment.  I mean ‘no’ at this time, this moment, but who knows about the future.  So, please, ask me again, even though I may say ‘No, I can’t.’ Okay?”

When I say…

  • “Yes, I can.”

I mean…

  • “Yes, I would like to and think I will be able to, if the conditions are auspicious, i.e. the weather is good, my stress level is low, the season is right, and I have actually slept.  I am really happy that you asked me and I want to do it–really, I do.  Please, believe in me.  Please, give me time to do my best.  Please, help me to challenge myself to do more than I think is possible.”

And so there we have it.  A bit tongue-in-cheek, but quite true for many, if not all, people who have fibromyalgia (see video below).  At some point or another, we have had thoughts like these–And I am sure that most people have had thoughts/feelings/experiences like these…the thing is that we just happen to have them more often. 🙂

I hope that these entries will help to spread more awareness and give some insight into what it feels like to have fibromyalgia.  It’s no walk in the park. 😉

People with fibromyalgia, we are strong and we show that every day.  Regardless of who we are, where we are, what we do, how we live; we are trying…and in trying, we survive and eventually thrive.

Below, I leave you with “Voices of Fibromyalgia”, the video that inspired this post.  Many thanks to its creator!


Until Next Time,

Diedré

Young Fibromyalgia Patients Report Worse Symptoms Than Older Patients, Mayo Clinic Study Shows


Young Fibromyalgia Patients Report Worse Symptoms Than Older Patients, Mayo Clinic Study Shows

Blog post by Sharon Theimer on MayoClinic.org

“SAN DIEGO — It may seem counterintuitive, but young and middle-aged fibromyalgia patients report worse symptoms and poorer quality of life than older patients, a Mayo Clinic study shows. Fibromyalgia most often strikes women. It is characterized by widespread musculoskeletal pain with fatigue, sleep, memory and mood issues. The research, one of several Mayo studies being presented at the American College of Rheumatology annual meeting, suggests the disorder plays out differently among different age groups.”

New studies find causes of fibromyalgia, offer hope of relief

New studies find causes of fibromyalgia, offer hope of relief.

Fibromyalgia solved: Not in the mind, but a very real physical ailment

Fibromyalgia solved: Not in the mind, but a very real physical ailment.

Raise Your Head…Face Your Day

Work-in-progress, started November 3,2011, acrylic

Work-in-progress, started November 3,2011, acrylic

These words by Nina Ellis-Hervey were important for me to hear today, especially as I have been dealing with managing my body and my illness.   Sometimes I do feel like giving up and feel like I am alone in my struggle to reclaim my life from the grips of my illness.

Although Nina’s words are geared towards those struggling with weight issues, I believe that they are powerful word useful for all people who may be struggling with any illness, physically or mentally, that may cause daily struggle with your body.

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“…I am living life day by day and trying to do everything that way…I am trying to keep in touch with family, with my friends… I have a million and one stressors in my life. And in the past, those stressors made me eat, made me gain weight.

And so now you can see how all that stress could cause me want to want to relapse, to go back to not working out, to go back to not taking care of myself. But that’s not an option. It’s not an option anymore…

It doesn’t matter what excuse you have. You only have one life. You only have one body. And nobody can take care of it, but you. Nobody is going to be responsible for it, but you. And so for me, everyday is a struggle… The battle never ends. This is for the rest of my life.

For the rest of my life, I am going to have to think about where I came from and where I don’t want to go back to. For the rest of my life, I am going to have to think about the foods I put in my body…

I have to always think ahead…I have always prepare myself…and unfortunately, it is a repercussion of my past…and not wanting to go back there…not wanting to even ever let myself go like in the past. I will never do that again.

I owe this to me…You owe it to yourself… It gets to a point that you cannot even listen to outside people. What they have to say is irrelevant…

Your journey is your own…It is not just happy-go-lucky every day for me. I am not just kicking the breeze and skipping through the flowers and the grass.

Some days are hard for me. But when I get back in it, I remember what I am in it for. Adjusting to the new you, it is rough. Everybody is going to grieve the old you…

Anything you do carries. It carries some kind of baggage behind it. I can choose to look as my baggage as negative, or I can choose to let it motivate me to try and to at least do my best…”

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Below is the video of Nina.  Again, it is dealing with her own struggles regarding weight.  So, watch it if you feel it is relevant to you.  In any case, the over all message is a possitive one.


Until Next Time,

D.

Hair, weight…Results are in (Part 3 of 3)

"True Mirror Image," photography by Dolores Juhas (2010). Copyright (c) Dolores Juhas. All Rights Reserved.

“True Mirror Image,” photography by Dolores Juhas (2010). Copyright (c) Dolores Juhas. All Rights Reserved.

So what happened after March 2009?

I decided enough was enough.  I was sick, tired, self-pitying, angry at the world and at myself, and just generally feeling that I was inadequate that my existence was quite pointless.

I wasn’t able to participate fully in either my personal or professional live.  It was hard.  When I looked in the mirror, the image smiling back at me was still sad.  I decided then that neither Fibromyalgia nor my mind nor my surrounding was going to stop me from finding a way to live.

"Not the self-destruct button" found at http://www.connectedprincipals.com/archives/4100.  I had to include this image... It was just too funny not to do so.

“Not the self-destruct button” found at http://www.connectedprincipals.com/archives/4100. I had to include this image… It was just too funny not to do so.

I decided to do what I could do…take one step forward.  I joined up with two other ladies to do a walk/run for 15 minutes for most mornings.

I decided to do Weight Watchers Online for three months to learn more about nutrition and to be inspired by others who were taking positive steps to make effective changes in their lives.

I decided to become vegetarian, slowly (and I mean very slowly) removing meat products from my life.

I decided to begin learning how to love myself as I was in that moment, not lament who I had been.  I wasn’t always successful, and sometimes I still struggle with that.

I acquired the following books:

I decided to become more natural with my medication, finding ways to decrease the amount of medications that I had to take.  It took consulting with my doctors and taking time to research, but it was worth it.

I temporarily joined a Fibromyalgia Support Group (though I did not always find it supportive, especially when it came to improving my physical health).

I began to speak out more about my needs and take steps at work to make sure that others understood the nature of my illness.

Waiting, photography by April Rivers (Fall, 2010)

Waiting, photography by April Rivers (Fall, 2010)

The Result?

After almost two years of doing this work, I found myself a bit more than 70 pounds lighter.  My blood pressure which was unreasonably high was lower.  My body that I could barely move most days began to move more.  My mind was less foggy.  I began to wake up to many realities of which I was not aware.

And finally, I became aware of something that I knew to be psychologically true…but never imagine I would ever experience.  I became aware of the fact that people were angry about my changes.

I had to deal with rumours about my weight loss, i.e. how I lost weight, for whom I lost weight.

Of course, when you go from a larger size to a smaller size, you need new clothes.  I was fortunate to receive some vintage clothing from April’s grandmother, which were more fitted to my figure.  Wearing these clothing turned into gossip that I was trying to attract men…even though these people knew that I was married and highly committed to my marriage.

"The Revenge of Pride," photography by Dolores Juhas (2010). Copyright (c) Dolores Juhas. All Rights Reserved.

“The Revenge of Pride,” photography by Dolores Juhas (2010). Copyright (c) Dolores Juhas. All Rights Reserved.

There was also a humorous side to all of this (actually, I found the rumours humorous too).  I discovered that suddenly people felt more comfortable giving me compliments.  I even had someone say that they were surprised by how good I was looking lately.

Suddenly, too, many people were ready to chime in on my general appearance:  how I should look, what I should wear, what my weight should be.

I guess you could say that losing the weight brought me both joy and distress.  I was happy to be free from some of the physical difficulties posed by my weight gain…but I was equally distressed by the growing hostilities coming from various parts of my life. Still, I do not regret it.

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And then…

I cut my hair and moved to Rome, which brought on a whole host of other issues, of which you can read about in earlier postings in my blog.

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Until Next Time,

D.

P.S. Check out School Psychologist and Professor Nina Ellis-Hervey regarding mind and body well-being. Link to her website here. Also visit her YouTube site “BeautifulBrownBabyDol“…You won’t regret it.