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.
“Just what could you be doing for so long on the computer?”
It was an unexpected question, but it was not surprising, especially coming from my mother. It is true that I spend many hours strapped to my laptop, either clicking the mouse or clacking away at the keyboard every day.
So, just what could I be doing?
The simplest answer would be “Communicating.”
I am communicating with the world around me and with myself. I am allowing my voice to travel to places where my legs, at the moment, cannot take me. I am building confidence in my presence in society and my voice. I am reshaping my identity instead of fighting my reality.
My reality is that of being a person with a chronic illness who, despite her desire for it to be otherwise, cannot rely on her body to function at 100%. For whatever reason, something inside me has become knotted and twisted, broken and weary, and likely will never heal. That is just the way it is.
Also, it does not help that I currently live in a small town with limited public transportation, and I dislike driving. Still, living in a small town has its benefits, especially for writing, which is what I have been doing since I returned home. Moreover, it is forcing me to reach out more and be a part of communities, even if they may only be virtual at the moment.
Although having a chronic illness can be an isolating experience, it does not preclude me from understanding and achieving my goals, one of which is to be a published author and poet. My illness is forcing me to deal with my worst enemy: myself.
For most of my life, I have been called an overachiever. I can be obsessive and perfectionistic, but I did not always realize that. I prefer solitude in most aspects of life but am loyal to my associations and make a good team player. My creativity is stifled when I am stressed, and I am prone to high-level procrastination. Without structure and goals, I become self-hindering. In other words, having fibromyalgia has meant dealing with the perceived weaker aspects of my personality.
Fibromyalgia is not just confronting the reality of pain, fatigue, and fibrofog. It puts center-stage your very self. And if you happen to have Type A more than B personality, then having fibromyalgia might cause you to feel a bit like Alice falling down the rabbit hole and landing in an unrelenting and even more nightmarish version of Wonderland.
Still, living in surrealism is not so terrible, if you keep hold of yourself and continue to build self-efficacy, which brings me back to spending a seemingly inordinate amount of time in front of my laptop.
Writing, communicating with others, researching and even watching my favourite cartoon or comedy–all of these things are available to me online. However, the internet has also become my temporary legs to take me to places known and unknown. Through it, I am able to keep my eyes and my world open. I can explore different aspects of self and remain (almost) free from judgement.
Ultimately, it reminds me that there is a world beyond my illness, whether that is a fictional world created through storytelling or the real world filtered through a screen. This mishmash of zeros and ones and bundles of connected wires is allowing me to rebuild myself and to shape my future.
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.
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.
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.
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.
‘What’s happened to me,’ he thought. It was no dream. His room, a proper room for a human being, only somewhat too small, lay quietly between the four well known walls…
Gregor’s glance then turned to the window. The dreary weather (the rain drops were falling audibly down on the metal window ledge) made him quite melancholy. ‘Why don’t I keep sleeping for a little while longer and forget all this foolishness,’ he thought. But this was entirely impractical, for he was used to sleeping on his right side, and in his present state he couldn’t get himself into this position. No matter how hard he threw himself onto his right side, he always rolled again onto his back. He must have tried it a hundred times, closing his eyes, so that he would not have to see the wriggling legs, and gave up only when he began to feel a light, dull pain in his side which he had never felt before.
It’s been ages since I have read Franza Kafka’s novella The Metamorphosis. I think I must have been in high school or college when I first came across this story. Although I found it interesting, I didn’t connect with it beyond the scope of necessary literary analysis. Twenty years later, however, I recognize myself within the character of Gregor, i.e. someone trying to adjust to a significant physical and psychological change. I understand the hostilities that Gregor has to endure because of his change, whether direct or indirect, because I have been on the receiving end of such behaviours.
Making meaning of one’s life is a challenging task in the face of external expectations and dependency. Having a chronic illness that significantly incapacitates me and, as such, makes me reliant upon the good graces of others, I count myself fortunate that I am afforded the time and accommodations to seek my own meaning and reinvention of self.
To my mother and all those who choose to understand, you have my undying gratitude.
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.
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.
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.
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…
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.
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?
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.
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!
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:
Examine myself carefully,
Celebrate the progress I’ve made,
Write down my strengths which will be an asset to any company,
Explore my weaknesses and look for jobs that diminish rather than promote them
Express gratitude for where I am right now in my life, including what I do and don’t have.
Create a Vision Board to “see” where I’m going (perhaps this should be first)
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.
Work quietly on improving skills that may come in handy.
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.
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 😉
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.
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:
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.
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.
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.
One-step. I take the foot-in-the-door | door-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.
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.
“Just what could you be doing for so long on the computer?”
Toward the within... 