Fibromyalgia: What They Don’t Tell You.

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Even before you have a name for your illness, you know how lousy it makes you feel.  Naming it fibromyalgia does not change much of anything.  You will still be bombarded with more medications to try, more questions to answer, and have days when you imagine that being run over by a bus would feel better.  You get accustomed to the pain, the tiredness, the nausea, the insomnia, the forgetfulness, the isolation, the medications, the questions, and the never-ending worry.  It becomes the lens through which you greet life and life greets you.  There is nothing rose-tinted about this.

During the period when most aspects of life seem to be one giant flurry, your mind may lose track of one certain factor: you have been forever changed.  However you have understood yourself is now, at best, moot.  Of course, this does not have to cause despair. It simply means making adjustments, challenging yourself to seeing you in a new light.

This is what the doctors will likely never tell you.  This is what loved ones may not understand.  This is what you could struggle to accept. You will never be the you you once knew.

Fibromyalgia is an illness that takes.  Yet still, even as it takes, it gives. What the doctors may never tell you is that it is your job to discover what fibromyalgia gives. It is your job to learn how fibromyaglia helps you to grow as an individual, how it gives you the opportunity to understand the world around in new ways.

I have met women who believe that fibromyalgia is a sort of death sentence.  I have even met women who see it as their ticket to receiving permanent care from others. Personally, I cannot fathom living like that.  Fibromyalgia is but one aspect of who I am.  It does not define me.  Do not let it define you.

Until Next Time,

D.

Overcoming Fibromyalgia

 

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Found via Google image search.

Over the years, I have found that physical illness involves three aspects of self: body, mind, and emotion.  It is not  just about the body healing itself.  It is also about the health of the ongoing dialogue that occurs between the body  and the mind, and the resulting emotions.  Of course, the body heals in its own time, but our thoughts can also assist in how healthy we perceive ourselves to be and ultimately are.  This is what might considered as “thinking our way to good health.” Visualizing a healthier version of ourselves can do wonders to begin or continue the process of actual healing.  However, the reverse is also quite true.  Beyond whatever factual illness we may have, our minds can contribute a hefty dose of additional symptoms, with which we must also contend.  Some might refer to such occurrences as psychosomatic symptoms.  For example, depression is not just something that impacts the mind.  It impacts the body’s ability to function effectively as well.  Depression is associated with physical symptoms, such as chest pains, fatigue, muscle and joint aches, digestive issues, headaches, weight loss and gain, and even back pain.  Add to that sleep disturbances and sexual problems, it might seem as though I have been describing fibromyalgia because the symptoms are quite similar.  These physical symptoms of depression are temporary, however, while fibromyalgia symptoms are chronic.

For a long time, the general consensus among doctors was that fibromyalgia was all in the mind, that it was merely psychosomatic, that it was not real.  Although there are still some who maintain disbelief, research has shown that fibromyalgia, the second most common rheumatoid disorder, is “now considered to be a lifelong central nervous system disorder, which is responsible for amplified pain that shoots through the body of those who suffer from it.”  Fibromyalgia is not something that you can just think away. No amount of visualization will permanently remove the impact that fibromyalgia can have on its sufferers.  That is the reality.

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The Broken Column, 1944 by Frida Kahlo. Image from noijam.com, found via GIS.

As the illness progresses, daily life can feel quite surreal. Perhaps you felt great yesterday, but today you feel as though you are broken in many places.  It may feel that there is no way to hold yourself together.  It is not just the pain that hurts.  It is ever-increasing isolation, diminishing self-sufficiency, and the loss of words that comes with the fog that overtakes the mind.  It is also the ongoing disappointment as you begin saying “no” to work, loved ones, and even yourself.  Having fibromyalgia means being broken, being scattered into tiny fragments of self that you try each to recover and bind together

S0, how does one overcome this?

Until there is a definitive cure found by medical experiences, there is no way to overcome fibromyalgia.  At least, not in the sense of the illness ending.

Instead, see overcoming fibromyalgia as a daily process.  For example, on days when you wake up to a flare, challenge yourself to do more than you think you can–perhaps that might be sitting up in bed, or talking to a friend on the phone.  On days when you feel great, challenge yourself to do less than you think you should–perhaps that might be leaving work on time or a little early (if you are still working), instead of staying late because you are trying to make up for lost time.  This is basically opposite to emotion action, a DBT skill that asks practitioners to 1) acknowledge and allow for their emotional state, and 2) act in the opposite manner than their emotional urge would prefer. For example, if you are angry and your emotional urge is to hit someone, opposite to emotion action would have you choose an action that is opposite to your emotional urge, so perhaps hug someone.


When we allow ourselves (mind, body, emotions) to give into illness, we allow for that illness to have enormous control over how we experience life.  Yes, you may feel ill today, but instead of focusing on feeling physically ill, try focusing your mind on what can you can do (in spite of your illness).  Contrarily, you may feel physically great today, but instead of focusing on feeling great, try focusing your mind on what you can do to ensure that you feel better tomorrow (this may mean holding yourself back a bit).

 

If we acknowledge our limitations and challenge our thinking, then this may be helpful in avoiding compounding our physical illness with our emotions.  Depression can be resulting factor of chronic illness.  For those of us living with fibromyalgia, learning how to cope with feelings of depression is vital to our survival.  Thus, finding ways to celebrate ourselves and the steps we take to feel better is key. Every day try doing to following (in no particular order):

  • Create an action plan (a.k.a. To Do List) based on your current physical state
  • Journal about your physical symptoms and your emotional state
  • Exercise in whatever way possible, whether that is doing a light stretch or going for a walk.
  • Eat well. Avoid foods that exacerbate symptoms.
  • Talk to someone, whether in-person, on the phone, or online.
  • Smile for no reason. Trust me, it helps.
  • Be mindful in each moment. Be aware of your thoughts and how your thoughts are influencing your emotions and actions.
  • Pay attention to the calendar. Know the month and day you are in.  It is very easy to lose track of time.
  • Set long-term achievable goals (but challenge yourself).  What is it that you believe you can no longer do/achieve because of fibromyaglia? Try to find ways to modify what you wanted to do so that it accommodates your illness.
  • Feed your spirit.  This does not mean join a religion. Do something to help others.

There is no guarantee that the above will work for you.  These are just the steps that I have found helpful along the way.  Yes, every day, I find that fibromyalgia diminishes some aspect of me.  Sometimes it is very difficult to see the positives in each moment. Still, if I do not try to make my reality better for me, then who will?

I hope these words offer comfort to anyone who is having a hard time today.

Until Next Time,

D.

 

 

Fibromyalgia & Maintaining Hope

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Maintaining hope is a matter of discipline.  Hope isn’t not magically bestowed upon you. It’s not something packaged in the form of the latest prescription your doctor wants you to try.  You can’t purchase it from your neighbourhood 24-7 pharmacy. You learned it from someone somewhere at some point in your life, oftentimes in childhood.  Hope is a skill.  As such, the old adage of  use it or lose it applies to it as well.  This is especially true if you have a chronic illness.

Having a chronic illness isn’t the end of the world, although it may feel like it.  To be blunt, it sucks to have a chronic illness.  However, in the difficulties that having any illness can bring, there is wisdom and compassion to be gained.  Still, being constantly ill or never knowing when next illness will strike can create feelings of hopelessness and helplessness, which can lead to or may signal depression.    In fact, despite being a mental health counselor and expressive therapist, I have felt hopeless and helpless at various points in my illness–a good portion of it being related to having to redefine my self-concept, rather than the illness itself.

I found that the more I refused to let go of what/who I was, the more frustrated and sad I became.  However, each time I conceded to a limitation and took steps to adjust to it, I felt freer and more hopeful.  As I have written many times, chronic illnesses take away many things from you, but they also give something to you.  Whether or not you choose to understand that there is a gift (or gifts) is up to you.

Chronic illnesses, as much as they can create havoc in your life, they also can make things really simple, especially decisions. Still, you have to see through the chaos of your symptoms (physical and mental) to the clarity of your will.  To help myself see beyond the difficulty of the any moment related to my fibromyalgia, I ask myself the following question:

Will I allow my illness to devour me?  

The answer is always no. I refuse to be held hostage to my illness.  Like all other things about myself that I cannot change, I have accepted that my illness is a part of me.  I don’t need to focus on changing it.  I need to focus on living with it, learning from it, and moving beyond it.  This is how I maintain a hopeful attitude about my life and my illness.

I no longer see my illness as something I need to or can fix.  If the experts come up with something definitive in the future that will alleviate me of my illness, then great.  Otherwise, I choose to focus on making peace with having fibromyalgia, rather than fighting it.  In those moments when I am feeling my worst, I choose to focus on how my illness is helping me, rather than how it may be hindering me. 

My hope is grounded in the belief that I can live successfully with fibromyalgia, regardless of what it takes away…because I believe it always gives me something in return.  Because of this belief, I also know that I can and will always find a way to help myself, even if the way is not immediately shown to me. I suppose what I’ve learned is that

Hope is about riding the waves of uncertainty…with a keen sense of direction. 😉

  D.

Check out this post by a fellow  Wordpress blogger: When Chronic Illness Causes Depression

5 Positive Negatives of Fibromyalgia…

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Yeah, I said it. There are some good things about having fibromyalgia…It’s just took me a while to figure out what they were.

  1. I can now predict bad weather.  That’s right. You no longer need to watch the news or visit weather.com, just call me (maybe I’ll answer) and I’ll tell you, because from the moment there is a shift in the weather my body knows it.
  2. I can relate to older people. You’ve got a pain in your back, side, arm, elbow, neck? Feeling weak and creaky? Can’t remember where you left…wait, what was it again? Wonder why everybody is moving so fast?…Well, I do, too. Let’s commiserate and wonder how we got here.
  3. I’ve hit a personal low. So, I can only keep going up from here on out.  There’s nothing quite like losing utter sense of self, having your livelihood stripped from you, and becoming reclusive. It put so many things in perspective, which leads me to…
  4. I’ve learnt to keep things real simple. Drama? No, thank you. I’m interested in the direct line from point A to B. Fix the problem or remove it.
  5. I’m mentally stronger.  Oh, I used to get bogged down in so many emotional situations that I really had no business being in…just because I thought these four little words: I can handle this.  I applied those four words to all sorts of situations: work, relationships, life changes, etc. What I’ve come to learn is that even if I am capable of “handling” a situation, it doesn’t mean I should.  In the end, the stress of unwarranted drama (i.e. drama for the sake of drama) only leaves me feeling emotionally and physically ill.  And no, I do not think you are mentally strong if you subject yourself to situations that will only increase your stress levels. Mental strength, to me, means being able to make the tough decision of not getting involved when there isn’t a need.

What about you?

What is it about having fibromyalgia that you have come to appreciate?

 

Fibromyalgia| Life in Chaos? 3 Steps to Creating Routine in Your Life

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Know this Feeling? (Image from GIS)

At this point, if you’ve followed my blog, you’ll know that my life is far from what one might call normal.  Still, it is my reality.  A part of that reality is having to deal with the inconsistency of my chronic illness, i.e., fibromyalgia.  There are some days that I feel great, like I could go run a marathon or two, and there are some days when even the thought of opening an eyelid seems like too much of an effort.

With such fluctuations in one’s daily experience, it can feel hard to create a sense of order to your life.  After all, what’s the point of making plans for the next day you’re never sure how you are actually going to be?

Over the years, I’ve engaged in an internal psychological warfare, trying to force myself to feel better when I don’t, blaming myself for real and imagined shortcomings, and even giving up on myself when I fell short of my expectations.

The path to living peaceably with fibromyalgia is far from smooth. However, over the past year, I’ve been working on letting go of my self-frustrations, allowing myself to feel whatever I feel, and strategizing how to take small steps that move me healthily along my path.

Image from GIS

Learn to Enjoy Life. (Image from GIS)

So, here are 3 steps that I’ve found useful to keeping internal order even when everything else feels like it’s in utter chaos:

  • Do 1 Thing the Same Way Every Day: Choose one helpful thing that you will do every day no matter what. Don’t cut corners.  Why? Because it helps to create a 1)sense of routine, 2) shows you that you can do what say you will, and 3) moves you a further step along your path.  So, what are some possibilities?  Depending on where you are in your journey, it could be as simple as taking care of your personal hygiene or working on a personal project (for me, that would be writing).  It’s up to you.  As long as whatever you choose moves you closer to your life goals, then it is A-OK.

 

  • Make Lists: If there is one thing that bothers me most about having fibromyalgia, it is dealing with brain fog and memory issues.  In the past, when I felt like my mind could not focus or I could not remember something important, I would really come down hard on myself. I took a massive blow to self-esteem because I did know how to accept and strategize around my illness.  Now, I make lists, especially if I know there is something important coming up. I would suggest having a bulletin board in a place where you cannot avoid seeing it, and posting your lists there.  If you’re not into the bulletin board idea, then I would suggest posting it on your refrigerator…after all, you have to eat at some point.

 

  • Write Down What You’ve Done Each Day:  At the end of the day, even if you didn’t move from your bed, write it down.  Write down who you spoke to, if you took your medications, if you made it out of bed, what daily goal you accomplished, and any and everything else. Write it down.  I do not mean that you should journal–although journaling is not a bad idea. I mean that you should take notes on what you do or don’t do each day.  It will help you to understand your personal patterns.  If you do this long enough, you can see how your symptoms might be impacting how much of what you can do in a day.  It doesn’t hurt, so try it.

 

I cannot promise you that following these steps will change everything in your life.  I do believe, however, that they are the beginning steps that will take you closer to where you would like to be.  Remember the key thing is consistency.

It doesn’t matter what you decide to do–how big or small it is–just be consistent.  Learn to appreciate the small steps you can take, so that when you are able to take larger steps, you understand the magnitude of your accomplishment!

Happy Fibro Friday! 😉

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 😉

Courage to Stand Still: Why Doing Nothing Might Just Be the Best Plan

Found via Google image search.

Found via Google image search.

As a recent graduate (and even in the months before, there was one question that many people wanted me to answer:  So, what are your plans?  Or the other variation: So, what are you going to do now? Or there is also this one: So, what’s next?

I don’t know about anyone else, but for me those questions act like an unintentional stranglehold. It’s as though having completed full-time studies for the past 3+ years while trying to work and dealing with my chronic illness wasn’t enough.  It’s as though stopping to take in life for moment is unacceptable.  We must know what were going to do next, achieve next, be next.

Well, heck, what about just being able to be where we are right now? How about just being who we are right now? Celebrating that and nothing else. I know it’s not the fault of those who have asked the question.  Many of us are trained to think in this manner, i.e. we are only as good as our next potential achievement.

In my opinion, these types of questions can cause anyone in transition to take on that deer caught in headlights look. Seriously.

Surely enough, there are many who already have answer, who are ready for the question because they’ve had enough training to know that they “should” have a plan for the next step.  There’s nothing wrong with that.  Actually, kudos to them for having a plan.

For me, what I’ve learned over the past several years is that planning (and over-planning) about the future is sometimes not the answer.  Yes, have plans, have goals, have ideas about the future. However, stand still for a moment and be with the present.

Living in the now, without focusing on what is come next, can be very useful. It can help you to appreciate where you have been, who you have become, why you are, how you came to be.  No, I’m not trying to get existential on you.  It’s just the reality that we really ought to take a time out just for ourselves.

Have the courage to say “I don’t know.” when asked about the future, even if you do have plans; or use my personal favourite: I’m not there yet, but once I am, I’ll let you know.

Happy Wednesday!

Until tomorrow,

D.