Step 1 unmanagability and powerlessness

November 4, 2013

Having chronic pain is something I am powerless over and can’t always manage.  I have good days and bad days.  The good days make me feel like I am able to function well, I feel healthy, and empowered to accomplish my goals and build relationships with people around me.  On my not so good days, I see the pain and fatigue show up in my life limiting me from doing what I want, but still able to function overall.  On the really bad days, I feel depressed, get tired of crashing, and seek the quick and often unhealthy escapes.

Powerlessness is what happens physically to my body.  Fibromyalgia has a path of its own that I don’t always understand.  Certain activities and situations can draw me into an overwhelming sense of fatigue and pain that at times can catch me off guard.  Though I can limit this pain to some degree by watching my stress, exercising, being healthy, managing activities, it will always be there ready to be activated.  Sickness and unintended stress can sometimes seem to come from no where, causing me to become more aware of this thing inside my body.

Unmanagability is what happens in my life because of my chronic pain.  When my fibromyalgia is in full force my life can revolve around my pain and fatigue and often other areas get neglected.  The more I try to control it,it can just make it worse as too much activity just wears me down.  When things feel totally out of control, I seek to escape this feeling and don’t always have the capacity to make good choices.  I get really tired and can’t  think straight, and don’t always care anymore to make the needed effort.

As depressing as this all sounds to me, seeing the reality allows me to look for a new solution.  I can be aware of what is beyond my own ability, and surrender this to God, a spiritual power, to the earth, to friends, or something that brings a sense of release.  Then I look at what I can do to keep my fibromyalgia in check as best as I can, and prepare for those days where life seems to sweep me under.  Often for me this is finding my support network, reaching within myself and seeking something spiritual.  If something isn’t working, seeking the truth of it, allows me to search for something better.  May today, I focus on what brings me peace and health, and prepare myself for the darker days with grace, wisdom and compassion.

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New food plan experiment

October 26, 2012

Next week, I am planning on trying a vegetarian and gluten free plan to see if it affects my symptoms in any way.  I have heard various people share of miraculous recoveries because of a particular diet plan, yet have been skeptical.  Even though I don’t expect drastic results, I believe I will feel better if I make some improvements in my food choices.   Anything that has the potential of helping me, especially with little cost, is worth trying.  I have most of my food ready to go!

I have been continuing with the 15M plan most days.  I have been able to do some form of exercise each day for at least 15 minutes.  Most days I do more than this.  On the days that I have really struggled, I utilize Netflix to watch something of interest.  I do best being consistent when I schedule something with a friend, other days I have to result to more procrastination tactics on my part.

I am also trying to make my top 5-8 items I need to accomplish each day.  I find it is really important for me to feel a sense of progress, especially when life feels more routine.  The check-off sheets remind me that I am doing well, making progress, even if I can’t do everything.


Disclosing a disability at work – part 3

July 7, 2011

Disclosure at work can be a difficult decision even in the best of circumstances.  Will it hurt my chances of advancement?  Will it give me protection for the accommodations I need?  Will it help others to know about my pain and fatigue?  Though I wish that honesty really was the best policy, when it comes to disclosure privacy may be the best option. 

Many questions are helpful to ask when making the initial decision.  Will I be able to complete the essential functions of the job without some accommodations?  What am I looking for and is disclosure the process to get me there?  I consider the risk associated with sharing particular facts and feelings regarding my “disability”.  How would I handle insensitive comments, silence and/or ignorance in the workplace?  Am I able to receive the support that they offer me?  When would be the best time to share and what specifically do I need them to know in order to succeed at my job?  It can also be helpful to know a little about who you are disclosing to, as reactions are usually about their own experiences and circumstances, and less about your particular situation. The answers to these questions aren’t stagnant, they will vary depending upon my health, the duties assigned, my co-workers and other life circumstances. 

Trust and effective communication are essential in the disclosure process with supervisors.  If I am unable to articulate my pain and my needs, it is impossible for them to grasp its impact.  Unfortunately, this isn’t always possible.  When I first returned to work, I wasn’t really clear about my needs in a work environment, because it wasn’t an experience I had encountered yet in my illness.  This lack of clarity, made my situation more complicated and created increased frustration.  I am much more persistent when I trust someone and more willing to ask for feedback and verify the meaning of key statements.   Without trust, it is difficult for me to feel safe especially when dealing with people in authority.  Generally specific request are granted, where emotional support is less defined.  However, emotional and practical support from a supervisor can make all the difference in the disclosure process. 

The ADA provides protection for disclosures but can create fear with supervisors regarding potential law suits.  I have found understanding the ADA is helpful in knowing my rights, as well as learning the language of the law.  However, an argument with an employer about rights rarely results in a positive work environment.  If disclosure is necessary (or apparent) it can be helpful to be clear about the specific request and why this is necessary for you to perform the essential functions of the job.  The JAN Network is a helpful resource to learn more about the ADA and accommodations for specific disabilities.  Being respectful, kind, clear and persistent will be aide in reducing the fears of the employer.  Most requests are best done in person with a follow up e-mail, but this may not be necessary for simple request and/or if the relationship with the supervisor is strong.  If an employer refuses or makes excuses it is important to keep accurate documentations in case further action is needed and/or desired. 

The issues with disclosure are numerous and can’t be completely communicated in a simple blog.  The most important thing about disclosure is regardless of the reaction of others at work, you have value in the workplace.  Find supportive people within the work place and/or outside of the workplace to process with whether you choose to disclose or to maintain your privacy.  Don’t give up.  Look for the gold in your relationships, your periods of growth, moments of service, your strengths, and living out your values. 


Introduction

November 20, 2010

In 2005 I began my journey into the world of chronic pain and fatigue.  I was overwhelmed with this constant pain that lingered in my body and my desire to find a cure for my mysterious illness.  Years of doctors appointments, test and medication trials in order to discover that my life would need to be altered as my  low energy and pain levels most likely would remain in the future.

The fullness of life that came through my pain has been one of the greatest blessings I could have imagined.  Chronic pain doesn’t have to be an ending point and it is something that can bring unexpected pleasures.  I have gained more compassion, deeper spirituality, more peace and patience then ever before.  Out of the richness I have gained, I hope to help others heal and grow in order to bring about the reality of new dreams and new possibilities.


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