Creative Writing | Survival 1

art,swimming,under water,pool

drink, take, spill, need, pills

wake, sleep, scream, feel, fall, breathe, void

— do you believe me? 

Fibromyalgia | Jet Lag Anyone? Any Expert Ideas to Share?

View from my Delta fllight back to Orlando.

View from my Delta flight back to Orlando.

Today makes one week since I’ve returned to Rome…and I’m still dealing with jet lag. Yes, indeed. My entire system is off, and I’m finding that I am still going to sleep at my usual hour EST (between 1 am and 3 am).  This means that I’ve been going to sleep between 7 am and 9 am.  The heat, humidity and killer mosquitoes aren’t helping matters.  Thus, I decided to consult those in the know (yes, I should have done this on day 2).  So far I’ve found one like of interest: “Melatonin may help to treat jet lag disorder”.

Well, if you have any other ideas, share in the comments or send me a message! 🙂 Thanks!

Until Wednesday,
D.

Fibromyalgia | Feeling Stuck? Try These 3 DBT Tips

Image from ThisIsYourConscience.com

Image from ThisIsYourConscience.com

It’s no joke when you wake up to feeling that there is nothing you can do to make your life better. This may be especially so when you have a chronic illness like fibromyalgia.  There are just sometimes when your life seems to be going nowhere and the only thing you have to look forward to is another day of symptom management.  Such moods can pass quickly, i.e. given your temperament and support network.

Still, what if it doesn’t?  What if you continue such negative self-talk and feel unable to break the cycle that you’re in? Well, the outcome surely isn’t going to be of benefit to you, your self-esteem, and achieving your goals.

So, before you get to that point, I wanted to share with you 3 tips from DBT (Dialectical Behavior Therapy) that may get you out your rut.

I’ve discussed DBT in various posts, so I won’t go into full details here. Suffice to say that DBT, developed by Marsha Linehan, is a form of therapy that uses the Buddhist practice of mindfulness and incorporates a cognitive behavioral approach to making positive change in your life.

Of course, there is a great deal more that goes into DBT.  The 3 tips below, however, might just be ticket to making this day one that lives you feeling inspired to do more and experience more in your life.

  • Opposite to Emotion Action – Although one of the last suggested techniques to changing your emotional circumstances, Opposite to Emotion is the first technique I turn to when needing to motivate myself.  Opposite to Emotion (from the Emotion Regulation skill set) asks of you to do the contrary action to your present emotion/thoughtsSo, let’s say that your mood is so low and the last thing you want to do is to take care of yourself.  Well, do exactly the opposite, i.e. take care of yourself. In this case, taking a shower, eating well, taking a walk, etc.

 

  • Nonjudgmental Stance – This is one of the last skills that is learned in the first DBT skill set of Mindfulness.  Taking a Nonjudgmental Stance means taking an objective distance from your present circumstances.  It asks of you to 1) observe your experience nonjudgmentally, i.e. without trying to change them, 2) describe your experience nonjudgementally, i.e. without condemnation or praise, 3) participate in your experience nonjudgementally, i.e. allowing yourself to be wholly involved in whatever you are doing.  I use nonjudgmental stance when I find myself in confusion about the actions or inactions I’ve taken in my life.  I aim to get at the heart and mind of my present circumstances, so that I can better understand how to change them.

 

  • Improve the Moment This is one of the four basic skills learned in the Distress Tolerance skill set.  Simply put, do what you can to make the moment better and not worse.  Focus on decreasing levels of stress and, if possible, removing yourself from the environment that may be contributing negatively to your experience.  This is where techniques such as imagery, finding meaning in the moment, utilizing prayer, practicing relaxation skills, taking a one thing at a time approach, taking a literal vacation from the place, seeking or remembering encouragement. 

 

Individually, each one of these 3 tips works wonders.  However, when put all together, I believe that you may experience even a greater shift.  I would add to the tips helping others.  I find that when I take the time to help someone else, it helps me to feel less stuck and more motivated to experience positive change.

 

Until Next Wednesday,

D.

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, Travel & Creative Nonfiction | Sometimes You Have to Be Poked & Prodded (Boston Update)

It’s been a long day. Actually. it’s been a long weekend. I arrived in Boston on Saturday night but didn’t arrive at my hotel until early Sunday morning. Slept for 3 hours, contemplated why the universe placed a homemade ice-cream place next to where I’m staying. Bought myself some grapenut ice-cream, slept 3 more hours, woke again, and contemplated some more. Slept 3 more hours. Rushed to catch a bus, and then another. Went to the dentist. Endured 3 novocaine shots. Replaced two fillings. Walked way more than I should have. Felt accomplished. Went to the dermatologist. I don’t have anything cancerous. But my hair is thinning due to PCOS…probably.

Took my time to catch a bus, to catch a subway, to wait for another bus, to take that to my final appointment. Saw my doctor. She made me laugh. Actually, we make each other laugh. I’ve gained too much weight. That may have affected my mood. I need to be on more medications.  That may help my mood. It may help my thinning hair. It may help my weight. I smile and laugh. I get sent down to the lab to pee, to give 4 vials of blood, to get hit on by a random hospital worker.

I remind myself that I still need to pack things, to bring my life into some kind of order. I’m asked what I am doing in Rome. I say I am living. I ask myself that, too. I respond the same way. I poke and I prod myself. I take deep breaths like I’m told to, like I tell myself. My blood pressure isn’t so high. Still I need to get back on my medications. I need to control myself. I need to prod myself. To poke myself into some kind of action.

I speak about overcoming depression, fibromyalgia, being in my late thirties…because 37 is late, it’s not mid anymore. My body is changing. It needs different things than what I’m used to giving it.

It’s 18:11. I need to get home…but where is it?

Fibromyalgia & Alternative Treatments | Tai Chi Anyone? If Not, Let’s Take a Walk!

Image from FibromyalgiaNewsToday.com. Found on FlipBoard.com.  Click to read the article "Tai Chi Practice Has an Anti-Aging Effect and Can Help Fibromyalgia Patients Cope with the Disease"

Image from FibromyalgiaNewsToday.com. Found on FlipBoard.com. Click to read the article “Tai Chi Practice Has an Anti-Aging Effect and Can Help Fibromyalgia Patients Cope with the Disease”

My mother has a massive collection of old VHS tapes, some going back to the early 1980s.  In the mix of these, I happened upon a major gem; T’ai Chi for Health: Yang Short Form with Terry Dunn (DVD available on Amazon).  One of the most important factors, I think, in improving self-management of fibromyalgia is always keeping your mind open and exploring as many means as possible to take care of your body, means that go beyond stuffing one’s body with medications.

Trust me, it’s easy to get into the habit of having to take several medications just to function.  Although there is nothing wrong with that, I believe that there must be other ways to live, i.e. rather than having to take medications to get up, to sleep, to manage pain, to focus, etc.

When I first became ill in 2005/6, for the first two years, I was living that life: consuming upwards of 10 pills just to cope.  Perhaps it was necessary then.  However, I decided to decrease the number of medications I had to take just to live.  Now, I only take 2, one specifically for my FMS and the other for my blood pressure.

Also, one of my internal struggles was dealing with what I considered a massive betrayal of my body.  Prior to graduate studies, I worked at a fitness center, teaching classes and doing personal training.  My body was strong, and I prided myself on its strength. Suddenly…that was gone. I couldn’t do any of the things that I once could.  Moreover, I felt an overwhelming sense of self-resentment because of this change. As a result, I stopped trying to lift weights, do yoga, dancing, etc. I gave up on living an active life.

I had to break my “ego” down to accept and enjoy what I could still do: walk. That was in 2009.

Fast forward to today and I’m still walking. I’ve made a commitment to walking each day…even if it is a few steps. I still get out of my bed and walk. Normally, I do not give myself a time limit. I listen to my body and I listen to music. I give myself a song limit on my better days–no more than 11 songs.  That’s my aim: keep moving one foot in front of the other for 11 songs.  

Still, I am always on the lookout for new ways to improve.  This is where the aforementioned tai chi video comes in.  Just recently, I decided to try my hand at this video, and I really enjoyed it.

More importantly, after doing a little digging, I learned that research has been done on the benefits of tai chi for people with fibromyalgia: read about a study in the New England Journal of Medicine, “Randomized Trial of Tai Chi for Fibromyalgia” and check out Flipboard’s posts on tai chi, including this one “Fibromyalgia Tai-Chi Treatment: Is It Effective Or Not?” by FibromyalgiaTreating.com.

I’ve only started, but can state that I found it interesting. I think, however, that I would prefer doing tai chi in the company of others than just with this video.  Still, I’ll take what I can get! Perhaps when I get back to Rome, I will find a place where others are practicing. For now, I’ll be practicing in my home, and I’ll let you know how it all goes!

Until Next Time,

D.

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 😉