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?

Question of the Week: If You Could, What Work Would You Do?

Image by The Library of Congress via Flickr
I know that many of us living with chronic illness aren't able to work right now. I also know that many "healthy" people just don't understand our inability to work because we "don't look sick." If you live with chronic illness, you know how hurtful belittling comments and attitudes of disbelief can be.

So let me set the record straight. I would rather be flipping burgers at MickeyD's, cleaning toilets or collecting garbage than stuck at home, day after day, with unrelenting chronic, severe pain and severe fatigue. Not being able to work translates into a huge loss of many things for me, including income, freedom, purpose, accomplishment and social interactions.

I think that most of us disabled by chronic illness feel the same way. We all wait for the day when medical science figures out how to successfully treat (and cure!) our illnesses so we can get back to living a normal life like everyone else does. A normal life were working is a big, important part.

Just because we can't work right now doesn't mean we don't sometimes think and dream about it. So this week, I want to hear about those thoughts and dreams when you answer this week's question in a comment here or over on the Oh My Aches and Pains! Facebook page.

Ready? Set? Go!

If your health didn't stand in the way, if money were no object and you didn't need to go back school to get more education or training, what job would you have?

My answer: I would run a non-profit organization that gives money to innovative research and social service programs that offer real solutions for people dealing with poverty, homelessness, substance abuse, physical and mental illness. I know that so much money is wasted on programs and services that don't really help and I wish I could help figure out what really does work.

(Thanks to my friend Julie who inspired me to ask all of you this question.)

My Dream Job: Record, Save & Submit

Image via Wikipedia

I am really quite excited by all of this!

Remember my recent post My Dream Job? Well it turns out that it got the attention of Nakia at the National Disability Institute. She sent me a very nice email which I want to share with you:

Hi Selena,
I just read your blog post about (your) dream job. It's a dream that many Americans with Disabilities share, and an unfortunate reality that job placement for people with disabilities is sub par.
I work for an organization called the National Disability Institute and we are holding a video contest this month where we are asking Americans with Disabilities to share their "American Dream". I think the narrative you created for that blog post would be a great entry.
The website with all the information on the contest is
http://dream.realeconomicimpact.org. You can also contact me directly if you have any questions.

Have a great day!
Nakia Matthews
National Disability Institute
1667 K Street, NW - Suite 640
Washington, DC 20006
202.296.2040

Join NDI and the Real Economic Impact team on the Web!
www.realeconomicimpact.org

So all I can think about is making a video. I have no idea where to start, but I have the whole weekend to start brainstorming...

And it goes without saying that you should think about submitting your own video too! I want you to join me in recording, saving and submitting a video to the Defining the New American Dream contest. Click the link below to get all the details:

Find out more about our video contest: Economic Empowerment-Defining the New American Dream. Grand prize: $1000 and a trip to Washington DC! Submissions due no later than August 13, 2010.

Got any ideas for my video? Let me know and I'll add them to my brainstorming list. Then watch for my video to pop up here and on YouTube before August 13th. Oh, and wish me luck!

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My Dream Job

I'm up, dressed and ready to get my day going. I've assessed that today is a good day, a good day to call in to work and see what opportunities they have for me.

"Hello, Selena," the voice on the other end of the phone cheerfully greets me. "Are you able to work today?"

"Why yes, yes I am," I reply.

"How many hours of work are you looking for today?" my liaison asks.

I pause for a moment just to reassess how I feel today. My pain level right now is about a 6, my fatigue level is about the same. I got a good night's sleep, which definitely helps. No errands or doctor's appointments today, so my schedule is free. Yeah, I can do this...

"I'd like 90 minutes of work today," I respond.

"Great. Here are the opportunities available to you today, based of course on your skills assessment:

• You can staff the Wacky Farms turkey hotline. Log into the company website and type 'Wacky Farms' into the job ID search screen. You will be directed to the call handling information tree. Simply call into the system and enter your ID whenever you are ready to take a call and a caller will be routed to you. The system will track your call time and advise you when you have reached 90 minutes.
• You can conduct Internet research for a client on moringa oleifera, also called The Miracle Tree. The client is looking for a list of links to scientific articles that reference moringa oleifera. Simply log into the company website, type 'Internet research + Miracle Tree' into the job ID search screen and use the company browser to conduct your research. Hit pause whenever you need to take a break. The system will track your research time and advise you when you have reached 90 minutes. This is step one in a multiple tiered project that includes reading the articles and write a synopsis of the information, which you are eligible to take as an assignment for the next two weeks.
• Or you can locate the best deals on the Internet for buying several different items, including an iPod Touch, a Sony 52" flat panel TV and a used Slacker Radio G2 40 station portable music player. Part of the assignment is to look for valid discount codes that can be used towards the purchase. Simply log into the company website, type 'best deals' into the job ID search screen and use the company browser to conduct your research. Hit pause whenever you need to take a break. The system will track your time and advise you when you have reached 90 minutes.

"Hmm, let me see, I think I'd like to work the Wacky Farms turkey hotline today."

"Great, Selena, let's get you started...."

Yes, this is a dream. But today I am going to ask the question, "Why can't this be a real job opportunity for people with disabilities?"

Today I am writing my blog post in support of Empowering People with Disabilities Day, a Bloggers Unite event. As the organizers state:

One in every five Americans is affected by a disability. This means that approximately 54 million people in the U.S. alone are working everyday to gain greater independence and create new possibilities for themselves.

Within the United States, the Americans with Disabilities Act (ADA) has done much to eliminate the barriers and discrimination people with disabilities have faced for so long. Yet, about three quarters of adults with disabilities are unemployed--even though most would prefer to be working. And, internet access for people with disabilities is about half of what it is for those without disabilities.

Clearly there is still a lot of work to be done if we want people with disabilities to be truly empowered!

I almost don't want to admit it, but I am one of those persons with disabilities that is unemployed. I receive Social Security Disability benefits, but my check is no where near the amount of money I used to make when I was employed. My chronic pain and chronic fatigue really limit how much I can do in a day and make me more home bound that I care to admit.

But wouldn't it be wonderful if there was an employer like the one in my fiction above that could match me to jobs that fit my skills and time availability? An employer that understood my need for flexibility in both work schedule and in my approach to getting a task done? An employer that encouraged me to work from home when I could and didn't penalize me when my health did not allow me to accept an assignment? An employer who recognized that I still had things to contribute to society even though I am disabled?

It really is a BIG dream, but today on Empowering People with Disabilities Day, I am going to allow myself to dream big because I know there are many more people out there who wish society could accommodate us more, beyond handicapped parking spaces and some limited protections in the workplace. I want to be a part of society, even if my participation takes place mostly inside my home. I want to be a valued member of society, even if I can only contribute a few hours a week to work pursuits. I want to be all that I can be, even if that looks much smaller than what most people can accomplish.

Please help empower people with disabilities and allow us to make our dreams a reality too.

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I'm in the ChronicBabe Blog Carnival!

Jenni over at ChronicBabe.com listened to the ChronicBabe Bloggers! group at the ChronicBabe Club (aka the forum) and decided to host a blog carnival on her site. The first official ChronicBabe blog carnival is up and ready for prime time. Click here ChronicBabe Blog Carnival #1: I can bring home the bacon! Thoughts on work and chronic illness to read all the great posts featured.

I am included in this edition as well. Here is what I had to contribute under the section Living with unemployment:

Selena at Oh My Aches and Pains! ponders the thought: What If I Could Go Back to Work? What would it take for her to go back to work in her current condition? She's not entirely sure, but she has some thoughts on the subject.

I hope you enjoy this new blog carnival and consider contributing to it as well. The next edition is on April 20th and the theme is Love, Illness and Other Confusing Things. If you want to participate, send your name (as you would like it to appear), the name of your blog, the name of your post, and a 1-2 sentence description of the post to chronicbabe@gmail.com. The submission deadline is Sunday April 18th at 10 PM Central (Chicago) time.

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What If I Could Go Back to Work?

Image by ForestForTrees via Flickr

You might be surprised that I actually think about working from time to time. I know that I spend a lot of time here at OMA&P! talking about all the chronic illnesses I manage and sharing my tips for making life more fibro-friendly. I perhaps have failed to mention that prior to life with fibromyalgia, chronic pain and fatigue, I worked full time for over 10 years when I only had type 2 diabetes, chronic Hepatitis C and cancer survivorship issues. Unfortunately fibromyalgia has been the deal breaker, disabling me and making me unable to work. But that doesn't stop me from wondering every once in a while: What if, one day, I could go back to work?

You see, the truth is I miss going to work each day. And I miss much more than the paycheck. I miss the social interaction, having colleagues and spending my lunch and break times socializing with other people. I miss the sense of accomplishment I got working on tasks, projects and from getting things done. I miss developing my career, gaining experience, moving along my career path and striving towards my long term goals.

What would it take for me to go back to work in my current condition? I'm not entirely sure, but I have some thoughts on the subject. My preliminary list of requirements for working while disabled include:

• A job I can do from home
• Hours that I set for myself
  
• Tasks that are amenable to being done in 15 minute work sessions
  
• Control of deadlines or due dates, so I can give myself plenty of time to complete tasks and review my work before I submit it
• The ability to set work aside for a day or a week (or two) when I get a cold/flu, brain fog or a fibromyalgia flare-up
• A back-up plan to potentially hand off an assignment to someone else if I am unable to complete it on time
  
• Projects that use my hands sparingly, so as not to aggravate my thoracic outlet syndrome symptoms
• Work that doesn't require a lot of time on the telephone
• Assignments that are simple, straight-forward and require only a moderate amount of brain power
• And lastly, at this time, a position that only require up to 5 hours of work per week
  

To be honest, I am not sure what kind of job fits this list of requirements. Even if I could find a job that fits, I would need to consider what other activities would I have to give up in order to fit work into the available energy I possess. I estimate, using the rating scale at the CFIDS and Fibromyalgia Self Help website, that my current level of functioning averages around 30% of my previous, healthy normal. What that means, in practical terms, I that I have moderate to severe symptoms almost all the time, I am able to leave the house several times a week (but not daily), I can do around 2 hours of activities a day and I require many rest breaks during the day. Realistically, I probably need to be closer to 50 and 60% of normal for work to really be a possibility.

This whole exercise seems to reinforce my initial thoughts that my ability to return to work is dependent on an improvement in my symptoms and level of functioning. But that won't stop me from wondering right now what my life might be like if I just got 20 to 30% better, another big "what if?" Despite all the uncertainty about my future health, I refuse to give up hope and stop wondering "what if?" After all, what if your thoughts create your reality? If I have a choice, and I always do, I chose to believe that one day I will figure out how to go back to work despite my disabilities. Perhaps all I need is some more time to figured out what jobs work for me now and how I'll get them.


Do you ever think about what it would take to go back to work now that you are disabled? Share your thoughts on the subject by leaving me a comment.