2013: The Year I Really, Really Needed Distractions

Welcome 2014!

I know I didn't spend much time here last year and I really missed blogging.  But I am happy to report I am ready to dive back in.

As for my absence and what dragged me away from my blog, well, let me tell you, it was probably the best thing that happened to me in 2013.

2013 - NOT A GOOD YEAR

Last year was not one of my better years.  Successful Hepatitis C treatment the previous year left me starting 2013 at a real low point physically and emotionally.  It left my body battered and struggling with a whole new set of treatment-induced medical problems.  Then, 3 months into 2013, I sunk even lower.  A car accident in March added injury to insult by starting a humongous pain flare-up and adding another new set of problems. 

Six weeks later, I was shocked and saddened by the news that my favorite Facebook game, Pet Society, would be closing in 2 months' time. 

I want to share all about these new health issues with you, but I'm afraid that is going to take a lot of time.  So for right now, I promise to write more about them in future posts.

DISTRACTION TO THE RESCUE

Time and again, I've written about how distraction is the primary way I cope with chronic pain.

Nothing helps me more than getting lost in a good book, television show or computer game, spending time tending to my container garden, playing with my pets or working on arts and crafts projects.  I have devoted time to creating lists of activities that I can participate in, regardless of how good or how poorly I feel on any particular day. One of my most important rules for living well with chronic pain is Have Fun Every Day and these pastimes, aka distractions, make it easy for me to have some fun each and every day.

Because really, if I have no choice but to live with moderately-severe to severe pain 24/7/365, I might as well figure out a way to have fun doing it, right?  Because life with chronic pain is absolutely no fun at all. And with increased medical problems and pain, I needed distractions more than ever in 2013 to help me get through all the tough stuff.

DISTRACTION IN MEDICINE

OK, so this is a little off-topic, but did you know, there is a reference at Wikipedia about this very concept?

Distraction is useful in the management of pain and anxiety. Dentists, for example may intentionally hum an annoying tune or engage in small talk just to create a diversion from the dental surgery process. Topical ointments containing capsaicin, provide a superficial burning sensation that can momentarily distract a patient's attention away from the more serious pain of arthritis or muscle strain.

LOSING A FAVORITE DISTRACTION....

With everything going on, this was NOT the time to be losing a tool out of my chronic illness toolbox!  Pet Society, a lovable little online Facebook game, provided me with hours of distraction from my chronic pain and fatigue.

As an early adopter of Facebook games, I honestly didn't think that a day would come when my games would be taken away from me.  Clearly I never stopped to consider the business side of gaming or took the time to read the Terms of Service for one of my favorite pastimes and coping strategies. 

....& GAINING A NEW ONE

I'm not even sure how I got swept up into the #savepetsociety protest movement or how I became such a prominent participant in what would unfold next.  What I do know is that my participation in this protest became a substitute for the favorite distraction I was losing. 

Now protesting wasn't as fun as playing the game, but it showed me how to use some old skills in a new way.

In my former life as a (somewhat) healthy person, I chose social work as my career.  I loved working with individuals, groups and communities, helping them figure out ways to address their needs and, in the process, create better lives for themselves.  This occupation requires a lot of interpersonal interaction, something that I no longer have the energy, concentration and stamina to do.

Interacting with people on a daily basis is what I miss the most about my career as a clinical social worker.

Fortunately, I discovered Facebook, Twitter and blogging in 2008.  Though not the same as an in-person social life, online social media became an alternative way for me to be social when I was able.

During the last 8 months of protesting, I used 1) all my old community organizing skills and 2) all the things I learned about social media to advance our campaign to give our game a second chance.  While ultimately our protest didn't achieve it's goal, our group put up a good and valiant fight and in the process got our message heard by Electronic Arts (EA), the gaming community and journalists in the business, human interest and gaming sectors.

That said, I am glad that things are winding down now.  Knowing this was a time-limiting endeavor, I think I might have pushed myself too hard, breaking my Golden Rule of Chronic Illness:

If you push, you will pay.
If you pace, you can play!

NEW YEAR, NEW GOAL

So as I move into this new year 2014, I wonder how I can translate what I was able to do and accomplish through the #savepetsociety protest into something more permanent in my life. 

To be honest, I'm not sure exactly what that would look like.  Perhaps a new role as a "armchair advocate" or some very flexible part-time work on social media campaigns?  Perhaps a place to start is to reread my copy of Women, Work, And Autoimmune Disease: Keep Working, Girlfriend! by Rosalind Joffe to get some ideas. 

While I doubt there are existing work-when-you-can employment opportunities available for us sick chicks, it doesn't stop me from daydreaming about participating in life as much as I am able.  Who knows?  Maybe I can convince someone with the time, energy and resources to help make this a reality for myself and others like me.

It is certainly a good idea, one that would help all us Chronic Babes overcome some of our handicaps and live our best lives despite chronic illness. Don't you agree?

All Flared Up, But Feeling Fine

Image via WikipediaLet me get right to the point here. You read the title of this post and ask yourself (among other things), "How can she feel fine if she is all flared up?"

For starters, let me say that under normal circumstances, I do not experience regular, moderate to severe flares of my fibromyalgia symptoms. Why? Because I have learned to stay in my energy envelope. It took me five years to learn how to do this, but I know I have mastery of this concept now. How do I know? Because I went WAY out of my energy envelope several days last week and got severely flared up.

So while physically I don't feel so great, psychologically I feel O.K. because I have proof that the things I usually do on a daily basis to manage my fibromyalgia symptoms really work. I also feel good because I know if I can get back to this routine during and after my flare-up, I can prevent this from happening again.

So, do you want to know some of my secrets?

1. Using an assessment scale, I determine my level of functioning. So right now, I am about a 20 out of 100, so I need to scale back the amount of activity that worsens my pain and fatigue to around 1 hour per day.
2. I acknowledge that feeling good is dangerous and can lead to me overestimating my ability to engage in activities. So I remind myself of the Golden Rule of Chronic Illness:If I push, I will pay, If I pace, I can play.
3. Next I plan out my activities for the day using the 15 Minute Rule. I schedule 15 minutes of an activity, then I stop to assess. If I feel more pain or fatigue, I stop and rest for 15 minutes. If I feel OK, I continue on for another 15 minutes. Wearing a timer around my neck helps me stick to my schedule.
4. I recognize that I need to modify how I do things to make activities more fibro-friendly. Among other strategies, I sit down while doing activities and use aids like a Pik Stik reacher or the shopping scooter at the grocery store.
5. I know what times of day are best for certain activities and I plan accordingly, sticking to a daily routine. For example, my hands often are numb and painful when I get out of bed, so I avoid using my hands a lot for several hours following awakening.
   

It is the knowledge that I have broken the push-crash cycle and can manage my fibromyalgia symptoms well enough to avoid major flare-ups that helps me feel fine despite more pain and fatigue right now.

Tomorrow I'll write more about how I got into my current predicament and the lessons I learned over the past week.

Tired on Top of Exhausted

Image by selva via Flickr

I sit here wondering why I am so much more tired today. More precisely, that's tired on top of exhausted for me. So after a minute of clueless wondering, I remember that I went grocery shopping with Robert yesterday evening, my first trip out of the house in two weeks. No wonder I am tired.

Of course, being sick for three weeks hasn't helped either. I've been starting to feel like a shut-in instead of a homebody. Now that I am feeling almost all better, the crawl back up to my 'normal' can start and my goal is to avoid a flare-up along the way. Grocery shopping is a good example of the slippery slope I face: my body doesn't respond until 24 hours later with the message, "Hey, you did too much!"

Time to make the Golden Rule of Chronic Illness my mantra: If I pace I can play, if I push I will pay.

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God Laughs and I Change My Plans for Tomorrow

Image by jaxxon via Flickr

"Wanna make God laugh? Tell him your plans!."
~ Vin Scully

The longer I live with chronic illness, the better I get at reading the writing on the wall. Only today I swear I heard God laughing at me: me with all my plans. Seems I've had a temporary lapse in judgment and gone a little overboard.

I thought it was smart to schedule two medical appointments back to back, Tuesday and Wednesday. I imagined I was being clever planning two medical appointments for Friday; after all, they are in the same place. (Isn't killing two birds with one stone fibro-friendly?) I decided the workmen coming to install the solar panels today would in no way impact my routine or day.

Sadly, I am being proven wrong on all accounts.

Thankfully amongst the giggles, I heard a whispered reminder, The Golden Rule of Chronic Illness: If I pace, I can play. If I push, I will pay. So with a gentle nudge, tomorrow I change my plans and give myself the rest of the week off. I need the rest. I've spent too much time walking on the thin line that is the border of my energy envelope. I've even stepped out of it more than a few times this week. I'm about to pay. Thankfully someone knows I'd rather play and reminded me in a gentle way.

I'm in on the joke. God's not laughing at me, God's laughing with me.

Will I Pay Tomorrow for What I Have Done Today?

Image via Wikipedia

I am totally exhausted and worried. I'm afraid that I have gone outside my energy envelope today with a new addition to my routine that is going to be part of my weekends for the month of August. It is always a bit dangerous when I add something new and novel to my repertoire. I know I should approach new additions with caution, but sometimes even when I think I am being cautious my body doesn't quite see it that way. Harrumph!

Just like Alice in Wonderland, whose main problem was learning to manage her flamingo in Wonderland's crazy rule bending game of croquet, my main challenge is truly mastering staying inside my energy envelope with this crazy acting body I now inhabit. Oh the joys of having a centrally mediated pain syndrome like fibromyalgia ... which is just a fancy way of saying that I have pain because my brain isn't functioning properly at the moment.

I always worry that I am going to suffer tomorrow for spending time outside the my energy envelope today. Try as I might, sometimes I inadvertently disobey the Golden Rule of Chronic Illness: If I pace I can play. If I push I will pay. Fortunately for me, my hubby will be home with me tomorrow and can accompany me to my doctor's appointment in the morning for my annual gynecological exam, where I will get the results of my annual mammogram. If I wake in the morning and it looks like I will pay, at least I have help making it through my day.

Here's to a tomorrow with minimal repercussions from living outside my energy envelope today.


My Reading Suggestion:

I own and have read the book Fibromyalgia and Other Central Pain Syndromes. While similar to reading a medical journal or textbook, I liked the book because it does present a lot of useful and technical information beyond what most self-help style fibromyalgia books provide.

My Routine: 31 Days Later, Do I Have a Routine?

Image by Kindreds Page via Flickr

There is a story I know a snippet of, about one of the founders of Hewlett-Packard. Either William Hewlett or David Packard was asked how to estimate how long a project would take to complete. He replied, " Take the time you think it will take and multiply it by three."

I've found that when you live with chronic illness as I do, the answer to that question is more like, "Take your estimate and multiply it by at least 10."

I don't know if I can say with confidence that I now have a routine, but I know that I am well on my way to developing one. I feel better about the concept, having aired out all my negative perceptions at the beginning of the month (Routine Defined, Or Why I Cringe When I Hear The Word). I then jumped into the task and found that I have some of the pieces already together (What have I learned so far about minimizing my symptoms? - Part 2).

I know that I need to keep it simple---simple is sufficient, expect the unexpected, live harmoniously with my chronically ill body and schedule days of rest. I've embraced my inner turtle and can be heard chanting the turtle motto: I'm not lazy, I'm just pacing myself! I even had an A-ha moment; aren't you proud of me, Oprah?

I'm going to end this month of blogging on the theme of routine by sharing with you my revised My Personal Rules and Not To Do lists. In the spirit of KISSIS, I am distilling each list into six easy to remember items.

My Personal Rules:

1. The Golden Rule of Chronic Illness: If I pace, I can play. If I push, I will pay.
2. Each day, keep a running tally of activity time. Using the CFS/Fibromyalgia Rating Scale, I know I can be active 2 to 4 hours a day
   
3. 15 minute rule: When active, stop every 15 minutes to check in. Stop if tired. Continue on for another 15 minutes if feeling OK. Then stop and repeat process.
4. Stay inside my energy envelope---through pacing, planning, resting, checking in and saying no.
   
5. Do something fun every day.
6. At the first sign of flare-up, rest, rest rest!

My "Not To Do" List

Do not:

1. Stand, when I can sit.
2. Walk more than a few minutes, when I can use a scooter (either my travel scooter or the one provided at the store.)
3. Shop alone; instead bring someone along to help me.
4. Shop in-person; instead, when possible, shop online.
5. Leave the house more than once a day (i.e. no more than one outing/appointment/engagement a day.)
6. Schedule more than 3 or 4 outings/appointments/engagements outside the house in a week.
   

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My Routine: I'm Not Lazy, I'm Just Pacing Myself

Image via Wikipedia

Some days, I am slower than a herd of turtles stampeding through peanut butter. ~Unknown

A friend of mine who I correspond with on Facebook recently posed a question to her friends: If you could have a super power, what would it be?

Remember Samantha Stevens from Bewitched? Remember how she used to think of something, twitch her nose and, presto, it would appear or happen? For lack of a better label, let's call this Think-Blink-Done! That's the super power I want!

See, the pace of my life with chronic illness is slow. I do not have any gears higher than 2nd---a stick-shift car reference. (By the way, I can no longer physically handle driving a manual transmission car any more.) What works for me is the 15 minute rule: I am active for 15 minutes and then I stop. Depending on the activity, I evaluate if I can go another 15 minutes and if the answer is yes, I proceed. If the answer is no, or the activity is too strenuous for more than 15 minutes, I rest. Throughout the day, each and every day, I pace myself 15 minutes at a time.

Another important part of pacing is to alternate activities. I rotate between physical, mental, social and passive endeavors. It is obvious that physical activities are both tiring and prone to exacerbating my chronic pain and chronic fatigue; what I learned is that using my mind, being with others in-person or even on the phone and passive pursuits like watching TV or reading a book can be just as tiring when you have limited energy to exert in a day. Keeping a balance between the types of undertakings I engage in during the day helps me not overdo it. If I expend my energy wisely, I find I can stretch it across the day and into the evening and engage in the things I want and need to do.

Both of these strategies keep me in the Energy Envelope, that is, only expending the energy I have. It's all part of the Golden Rule of Chronic Illness:

If I pace, I can play. If I push, I will pay.

I want to play, so I have learned to accept my life at a turtle's speed. I embrace my inner turtle! The turtle motto is: I'm not lazy, I'm just pacing myself.