The Dark Hour poem

May 3, 2013

My soul aches, My heart cries;

When will, this pain die?

I watch and wait, for the morning sun;

When everything glows, and the children run.

Conflicts and confusion, trials and scares;

Broken dreams and promises, mistakes and failures.

Each day a struggle, for some air;

More cancer and death, that doesn’t seem fair/

Where is the wisdom? Where is my God?

It doesn’t make sense, in the gloomy fog.

I feel alone, though many are near;

Get me out, ignore the tears.

Just a little hope, or a little light;

help me see, a new sight.

Show me the praise, of a new day;

How to mend, what was frayed.

Show me the love, that I hear about;

Help me receive, the kindness of heart.

Help me hear, the wisdom up high;

To bring discernment, from the lies.

Bring me comfort, to ease the pain;

An inner peace, that forever reins.

I will open my eyes, and clear my ears;

Ready to see, ready to hear.

I will prepare my heart, and my mind;

to be ready, for a new time.

May the grace come, and fill me up;

forever hope, forever love.

Elissa 5/1/13


The Next Adventure – I got the job!

April 29, 2013

I can’t believe it – I am almost officially employed.  I received a call a few days ago that I was selected for a part-time job as a legal assistant.  I am looking forward to returning to work, challenging my mind, and meeting new people.  Everything seems like a good fit for me during this time in my life.

Having chronic pain does bring some unique concerns that I would prefer not to have.  I have to consider the office environment, my ability to focus, and whether I should disclose about potential limitations, and ways I may need to adapt.  Unfortunately every job is different, so what worked and didn’t work in my last job may not apply.  Fortunately I am healthier than I have been for years, and am no longer on any medication.  This should make a difference in my stamina.  Hopefully eating right, taking breaks, and drinking some good coffee will help me in the initial intense learning days.

Regardless of my concerns, I can’t help but be excited.  I will hold on to the energy I feel from being with the people I will be working with, and my own interest in the law.  I love learning about the law, and doing research on topics that interest me.  I will keep my support group strong, let go of some of my commitments and forge ahead to this new path.  May the spirit guide me in each step, and help me deal with whatever comes my way.

 


job interview today

April 22, 2013

I had a job interview today for a legal assistant position.  In many ways it was a spur of the moment application, looking through jobs and finding one that seemed interesting.  I have always wanted to be a legal assistant, and this looked like a great fit for me: close by, few areas, and my areas of interest and strengths.  I really enjoyed meeting the attorney and other legal assistant – wow, great people.

When I came home, I wanted the job more.  I love the idea of a new challenge and being able to make some extra money.  Did I mention the people were great?  Very kind and easy to be with.  The job sounds challenging and stimulating.  The interview went well – it lasted a few hours.  I really believe I can do the job (well most of the time).

Then the fear creeps in – should I have disclosed about my chronic pain?  Last time disclosure was a disaster, and ended up being more problematic.  I think it is something better to manage on my own.  Lots of coffee in the early days to help with the fatigue, and move around as needed.  I may have to limit my evening activities.  I felt confident in my decision not to share.

As the evening approaches, I decide to see if they looked me up on Facebook or LinkedIn.  Not sure about facebook, but linkedin shows that someone from a law firm looked at my profile today – oh no, what is on there?  Overall professional, with lots of connection to disability groups and pain groups.  Then I saw the part about fibromyalgia – did they read this?  Oh shit, not what I wanted.  I didn’t want the interview process to be mixed up with the fibromyalgia.  Looks like they may have known before they interviewed me.  The good part is, we still talked for hours.  The challenge is whether they were hoping I would disclose or not.  Since no-one read my chronicpain journals today, I am confident they didn’t read about my disclosure series :).

Well I should know in a few days whether I got the job.  I am feeling sad and fearful.  Sad that I have to worry about this thing called fibromyalgia and fearful that it will be a shadow that follows me every time I step into the light.  I am one of 5 people who were interviewed, and clearly we connected.  I pray that regardless of what they learned, they can be open to seeing my strengths and find who is the best one for the job, whether that is me, or another person they interviewed.  I also pray that I can accept whatever comes my way.  I don’t feel compelled to take the fibromyalgia off of my linked at this point, but might be something I do in the future if I continue to look for work.


Memoir Review: Grace, Gold and Glory by Gabrielle Douglas

March 19, 2013

I really enjoyed reading olympic gymnast, Gabrielle Douglas’ book.  My family and I loved watching her spirit and skill in the olympics.  My youngest daughter’s name is Gabrielle, so it added an extra dimension to our interest in following her.

What I loved most about reading her book is the positive outlook she has at such a young age.  Though she has had many challenges, she was honest about her struggles, and grateful to those who helped her along the way.  It is amazing to see how many people supported her on her journey, and aided in her being the success she is today.  At the same time, she was able to persevere with her faith, and inner strength, holding on to her dream.

This is a great book for both adults and tweens/teens.  It is an inspiring book for an athlete and people who have high aspirations.  Gabrielle is an example of someone who continues to be true to her values, whether she is struggling with daily life or a woman of great success.  Thanks Gabrielle for sharing with us.


12 steps for chronic pain, looking at harms – step 4

February 26, 2013

Step 4 is about looking deep into ourselves – our fears, how we were harmed, how we harmed others, our struggles and our strengths. It isn’t meant to be a point of condemnation – a list of how awful we are, but of confirmation of what has made us who we are. Without looking truth in the face, it is hard to break out of patterns and behaviors. The truth also allows us to see what works for us, and when we are most how we dream to be.  Since there are a lot of complexities in step 4, I will start with harms done to me.

In the Big Book, step 4 is “We made a searching and moral inventory of ourselves”. I find this step life changing when I am able to dig deeper into my own responses to situations and how this also impacts my current behaviors. For example: One of my friends, “Cailyn”, reacted to my physical symptoms with a lot of questions and assumptions about my psychological state. We had been close at one time, but less connected prior to my illness. I felt hurt by her comments and questions. What she said to me and her lack of support effected our relationship (social) and how I viewed myself (security). I however reacted by being angry, criticizing her, felt doubt, self-pride, rationalized, resentful, suspicious and self focused. Though many of these reactions were internal, I reacted to this hurt by causing additional harm. I am not responsible for her actions, but I am responsible for mine. As time went by, I allowed the relationship to fade, which was a good thing at the time as we were going different directions. However, I continued to resent her and her reaction to me when I was sharing my physical struggles.

Such as with Cailyn, there are many people who caused me harm when I became ill. The list includes family members who weren’t able to recognize my pain, other people who thought I was seeking pain medication for an escape, doctors who were unkind and unhelpful. Some of these harms may have been more about my own assumptions of why I felt they did what they did. In general, most of us are fairly self-absorbed, and on a given day are unable to give everyone the support they need or desire. When I am listing my harms, I found it was helpful not to analyze too much about what I didn’t know, and reflect more on what I felt was a harm, because this is what I react too. Later I can look and pray for clarity on whether my perception could have been off (many times it is) or whether my perception is only slightly true, such as I may think someone is overreacting, yet still might agree mostly with what they say.

Much of my reactions to harms done to me are similar to reactions I have had since I was a young child. I believe many of my reactions are almost automatic especially when the situation brings up old feelings of abandonment, criticism, abuse and/or neglect. If I feel shame, I tend to look for ways of self-preservation. Often this is done by accusing other people, in order to feel ok about myself. When I recognize what I am doing, I can look more clearly at what is being done or said to me, and process whether this is something that is true, where I need to make a correction, or something that isn’t, where I may need to move away from the person or situation. If I am wrong, my guilt can move me to make changes while holding onto who I want to be. If I can’t see clearly something I did, I can ask questions for clarification, and try to understand where they are coming from (which may not be related to me). Though doing the right thing doesn’t necessarily keep me from being resentful, it does give me space to make the choices I want to make, and lessen the impact.

In my world of chronic pain, I hope to find grace and forgiveness for this journey. May I be free of shame, and have a heart that seeks to understand.


Stuck in Time – Roles we play

February 25, 2013
Solid Rock

Solid Rock

As I have run into many old friends and acquaintances this past week, I am reminded of how I feel stuck in a time zone. I have played a variety of roles over the years, and built many relationships. Different situations and time periods have brought out different parts of who I am or who people perceive me to be or how I perceive them to perceive me (generally not the same thing). When I run into a variety of people from different time zones, or different role periods, I find myself confused, as if I am struggling to feel solid in my identity.

Over the past 14 years I have belonged to a community of people from a place I call my “church home”. I love what the church brings – hope, love, faith, service, community, strength, and relationships. It also brings for me confusion, judgement, conflict, vulnerability, and questions about my beliefs and experiences. In my church home, I have gone through periods of sporadic involvement, little involvement, outsider, regular attendee and active leader. In many ways, the best and worst parts of me have been known in this community I call my “church home”.

As I walk the halls of the church building I feel like the wind is blowing in a variety of directions. I see teenagers and girls who are in my coaching world. The place of today, and where I spend much of my extra hours and devotion. I also run into people who were active in a mom’s group which I led, or a committee I was on, where we connected together for a purpose and passion. Then I turn around to the people who were around in the middle of my darker/addicted mind-set, watching me spin out of control. Next to them might be the person who recalls my early fibromyalgia days, and has compassion for my illness. And then, almost worse than the rest, is the new leaders and attenders, who are completely unaware of my existence and history, seeing me as “the newbie” or “nonexistent”. I can’t make sense of the history and the various feelings that emerge from within. How do I change and intersect these places, and block out the negativity that can haunt and paralyze me?

I often believe that the healing and transformation is in the process. Perhaps all my feelings are a way for me to be more graceful to myself and just step into the fears that permeate my whole being. I tend to believe that I have to do something to make up for the things I did that were destructive to my soul and hurtful to others. It is easy to simplify people’s responses, when I move into a shame based center. When I find my own place of peace, is allows me to be more centered and have a better balance of inward and outward focus. I may still feel the fear and shame, but my decision won’t come from that place. Maybe things will change for me if I look to receive the grace and love, than to question or seek to understand the complicated thoughts and feelings of another towards me.

I feel ready to get out of this zone. I honestly don’t know how this will happen – but I aim to at least see the next layer. Instead of focusing on what I perceive from others and the role I am playing, I can focus on the vision for myself and where the Spirit leads me in that moment. It isn’t a battle to win, I have nothing to prove to myself – this is about being open – about seeking to grow and build relationships with this community I am in. It doesn’t have to look a certain way, and I may not ever be “the leader” I once was, yet I can be someone with greater love and grace that continues to transform me from within.


How serious is my chronic illness?

February 25, 2013

This past week, I have learned that several people I know have cancer. Cancer is a horrible disease that most of us have witnessed in some capacity. It can be painful, deliberating, expensive, draining (emotionally and physically) and potentially deadly. We wish and pray that this disease finds a cure.

While learning of the cancer diagnosis for people I care about, it has brought about a lot of personal emotions for me to process. Having any chronic illness and going through the process of discovery of what it is, the prognosis, and treatments is difficult. At times we have hope for what the future can bring through this new illness, and at other times the future looks bleak. Having people around for support and love can make all the difference. It gives us a degree of connection, though we might still feel alone in the journey.

When I first began having fibromyalgia symptoms, I blew it off as an extension of an illness. I thought eventually I would regain my strength, and the tingling sensations were just a weird manifestation of an infection of some sort. Emotionally I was dealing with some personal issues, that seemed to be leading me into a dark place. I wondered if the stress was taking its toll upon my body.

After several months, and having pain that was moving into the 6-7 pain scale, it was time to see a doctor. I could no longer ignore what was going on, and the constant lying around was becoming problematic. Summer ended, and laying on the couch wasn’t as fun as laying in a baby pool with my kids.

Those early days of diagnostic testing and medication experiments were tiresome. I can remember the fear I felt as I went through the process of searching out potential diseases I could have. Each test brought different possibilities. At the beginning, I can remember hearing and dreading the word fibromyalgia. I hated this word, because it seemed to imply more mental issues and unclarity than other diseases, especially since it appeared to be more of a “we don’t know” diagnosis. As I had more tests, and realized the possibility of something deadly, I began to care less. I remember sitting in the doctor’s office having an echogram (I think that’s the name) where they were searching for a heart infection, and the technician was explaining that if they found an infection, it would need to be treated right away, or I could die. I felt relieved later, to discover that I had no infection in my heart, and became more open to any possibility, even if it was more in my head.

I can understand more clearly how fibromyalgia is an invisible disease. Though I have received great support over the years, especially in the early stages, in general this has subsided. I know people care, yet few people understand. I feel a battle inside of finding the balance of keeping it alive (this is what Fibro looks like), and living my life in my own personal fibro bubble. Because I look and act “normal”, even the people closest to me forget my pain and fatigue. Occasionally someone will add a reflection that shows an understanding of my illness to the situation at hand. I feel blessed and loved when those connections are made.

I cannot imagine fully the impact of having cancer. I live with a chronic illness, and have watched my mother die from tongue cancer and my sister-in-law survive cancer but have not experienced it myself. No matter how difficult my days are, I realize that this disease will not take me away from my loved ones. I may have to watch for other symptoms (such as depression) that could shorten my life, yet the core symptoms of fibromyalgia won’t do this. Cancer doesn’t necessarily mean a death sentence. Most people with cancer, actually live a long life. However, the fear of death is greater because the potential is there.

I hope and pray that I can be a support to others in their experience with a chronic illness and/or disease. I admit, at times it is hard for me, because I can long for the support and love that can come from people with a more serious illness. As with any difficult challenge, it is important that I recognize how people care, even when it may not be so evident in the way I desire. I still have people ask me how I am, years later – the love is there. May I be able to offer the best of what was given to me.

None of us know what it is that lies ahead for us. Our life is filled with both amazing blessings, and horrific challenges. The medical world can try to simplify and provide better treatment through diagnosis and statistics. However, regardless of what it might appear to be, the mystery remains. May I find a way to love and be loved in the mystery.


living life as a coach with fibromyalgia

February 18, 2013

The winter months have been busy with coaching activities. I am an assistant coach with 3 teams, 2 soccer and 1 basketball. It sounds a bit crazier than it really is. Most days it is helping navigate young female sport players around the field or court. I enjoy the physical activity and interacting with players and coaches in a healthy atmosphere. There are usually several girls who enjoy having a female coach around (most of the other coaches are male), though I tend to be structured and disciplined, I also connect on the emotional level. My favorite thing about being a coach is connecting with the players and building them up. My second favorite is the team dynamic, and strategizing on how to create a stronger team by building on the strengths and working through the challenges of the individuals.

My biggest challenge tends to be dealing with the mental processing and dealing with conflicts that arise. Since I don’t know the game of basketball real well, it takes a lot out of me to learn the fundamentals and think about what I can do to help. Though overall the conflicts with players and coaches are pretty mild, issues still arise. As a coach, I want to make an impact on the individuals, and when I say something I wish I hadn’t said, or missed an opportunity to build a player up, I feel disappointed in myself. With about 15 coaches in the 3 teams, it is a lot of personalities to deal with, especially when I prefer to please. There is some simplicity with men, in they appear to be more direct and move on, I also realize we can be a different species, and find myself longing for a girls’ night out. Any stress (whether real or perceived) or mental challenges can zap my limited energy, and increase my pain level.

I have also been trying to build a health coaching business. I absolutely love coaching people, but don’t care for the networking aspect. I am constantly battling inner conflicts of my own values and insecurities. I believe in the food program/healthy living that is the core of the business I am trying to establish, but also realize it isn’t for everyone trying to lose weight/become healthy. I personally have felt better as I am trying to change my eating habits, and am able to do things like coach 3 teams. I love being fit and healthy. Because I am uncomfortable promoting to people, I feel like a failure because I don’t know where to find people who would be interested in such a program, and don’t want to overemphasize weight loss because it can imply that I am criticizing people. I find myself completely shutting down, and realize this has little to do with my current reality. I will keep attempting to deal with the inner conflicts so I can see more clearly what direction to move here.

I am grateful to be so involved with my family. Did I mention my husband is a coach on two of the teams? It really is a family affair in the coaching world. I think back to 7 years ago when I spent a great deal of time on the couch resting from the daily activities and energizing myself so I can connect with those around me. Though I was still involved with my family, it was much more difficult to engage in the outside world. There is no magical cure, and it takes a great deal of soul-searching each day to determine where to invest my energy. Some days it seems to work, other days, not so sure. I will keep trying, keep searching, keep praying, to find the balance and build those relationships.  In the meantime I will keep making those memories on the field and on the court.


Surrender my chronic pain to something greater

January 8, 2013

Summer 09 352It can be hard to surrender my chronic pain to a higher power.  It is easier for me to seek answers in others to bring wholeness to fill the void in my life.  I often feel shame because it makes me feel weak and needy, feelings I seek to avoid at much cost. I can see that alone I am lacking, and I long for something greater to fill the voids and bring healing. 

I see that my way of controlling life and finding meaning does not work. It leaves me emptier than I was before, and separates me from the One that can bring my life back. In the moment it has brought me to see the longings that I have tried to deny, and to also see that I really don’t always believe the Spirit can meet these needs in me. I can see myself as bad and being punished by God.  I wonder if the Spirit has abandoned me when I hear nothing, and my symptoms don’t change.  When I take the time to connect, generally I can feel the peace. Often this is done through prayer and music.

When I come to the Spirit in my greatest place of need, and in my weaknesses, struggles and failures, and find love, than I become more trusting. I can become more honest and vulnerable allowing room to reveal the brokenness, and bring healing to my life. I don’t have to fear this part of myself anymore, and am willing to look at it without shame. I find that as I accept my life as it is, that I am much more humble and graceful to others. I can see the heart of the Spirit in a way I never have before. Compassionate, yet willing to guide me out of the traps I set myself in. I have many obstacles to really trusting and believing in a Spirit. Many of which for now, I just have to acknowledge and be open about. I see the distortions in my head, and it will take longer for it to sink in my heart. This is where real transformation takes place.

I believe that I live a spiritual life and in many ways feel deeply connected to the Spirit. I want to follow and surrender to something greater. Yet I still struggle to give up my desire for what I want-complete healing and to rearrange the dreams I had for myself. I still have much to understand about the bad things in life, including my illness/pain, and I know this hinders my ability to trust. I have to remember that religious people, are not the same as the Spirit. And that spiritual leaders may be godly in some areas, while being destructive in others.  I will be open with what I don’t get, and listen to what I am to do with that.

I love connecting with the Spirit in nature, and am finding this extremely valuable. Walks with the Spirit have been a source of clarity for me, as I hear a voice in the wind and trees. The majesty of spiritual things reminds me of who is in control, and that a power is greater than any problem I ever have or will face. He also is a Spirit of beauty, and wants to bless me. So much has been given, that I have not received.

I have been given so many people for the journey, lots of support and spiritual guides. I have learned so much from the people who are in my path. People who have shown me grace and love. Not all understand chronic pain or me for that matter, but I do know many love and care for me. I am grateful to have my heart open up more to all kinds of people and situations and to realize that things aren’t always as they seem. Can’t be too quick to make assessments about people and situations I do not understand. I gain much wisdom as I am able to ask with a heart for the person, and a desire to learn about their unique experiences. My life is truly about relationships, and if I didn’t have much time on this earth, this would still be where I would devote my time.

2.       Came to believe that a Power greater than ourselves could bring us peace and sanity.

3.       Made a decision to turn our will and our lives over to the care of God as we understood Him.

 


Dreams, Goals, Adaptations and Plan 15M

January 7, 2013

Picture 033I absolutely love making goals and creating plans.  It inspires me to dream and make positive changes to my life.  I can take time to reflect on what in my life is or isn’t working, and look at ways to move in the direction I want for my life.   

I find that making goals in life works best when it starts with listing out my own values.  This gives me a framework for deciding where to invest my time, and when it might be best to change a course.  Because my values are also about relationships, this helps me to include people in my goals, not just concrete goals around accomplishments.  I include values of self improvement and character traits I aspire to.  Though these may not be as measurable, my personal integrity is more important than the accomplishments I make.   

I have a list of seventeen top values that I have revamped over the years.  My overall mission statement is:  I will strive for growth, healing and deeper spirituality, where I can truly love others, giving joy, grace, and peace to those I meet.  Some of my values include building strong relationships with family, friends and neighbors.  Others are about personal traits such as saying I am sorry, being forgiving, having fun and living a life of integrity.  I also include fitness and health, making a difference, being financially secure and helping people in need.   

Next I start with a free write of goals and hopes of what I would like to accomplish.  This might be short term or long term ideas, as well as self improvement type of goals.  I try to avoid thinking too rationally when writing out my dreams, as this is something I will do later.  For some this might be better done by writing in paragraph form visualizing the life they wish to have, others prefer lists.  It can sometimes help to look around at people you admire, and what are the traits and actions that draw you to them.   

Once I have a list of goals and dreams, I begin to group them into categories and time lines for further evaluation.  I will group together health goals, relationship goals, spiritual, personal trait goals, finances, etc.   With each group I will think about what I can do in the next year to make progress in this area.  For relationship goals it might be scheduling dates with my husband, planning some vacations and/or having a game night.  For health goals it could be losing weight, going to a new doctor, trying a new exercise  and/or meditating self compassion.   

One thing to remember with goals is that it is about progress not perfection.  In 2012, I had a list of about 40 goals and I accomplished about 60% of them.  Some of these goals were minor, such as putting pictures in frames and going through donations.  Other goals were more significant like starting my blog and going back to yoga class.  I never did finish doing touch up painting around the house, but I am ok with putting this off another year.  I wish I had found the time to create goals with my children, as this is a worthwhile project.  Even though I didn’t finish everything on my list, I can see that the year 2012 was filled with some new adventures and progress in areas that matter to me.  The other goals I didn’t finish I can evaluate whether this is something I want to reconsider in the next year.  Fortunately, 2013 brings new opportunities.   

I am excited for what 2013 can bring and my personal goal of implementing the 15M plan.  For 2013 I am going to focus more on making life style changes in increments.  The 15M plan allows me to make progress even in the more difficult health days, as I focus on spending 15 minutes on the desired activity each day.  Often when I am tired or feeling a great deal of pain, I lay on the couch a good part of the day and isolate.  If I can focus first on 15 minutes of some type of exercise, it is a goal I should be able to attain most days, resulting in less discouragement and better health.  When I am feeling good, I will most likely do more, but on a bad day this can help me shift gears.   I will add other areas that I want to progress in such as writing, family time, cooking and doing chores.     

Life many of us I have goals for improving my health in 2013.  I plan to do some experiments with the types of food I eat to see if they may be adding to my symptoms.  I also will be doing health coaching for other people who want to improve their health.  I hope to be able to make an impact on people struggling with chronic health problems and to give hope.  I want to strive for more consistency in my life, and learn to work around the tough days.   

Making goals can be a simple process or something you spend weeks processing and planning.  The most important thing is to make some progress.  Taking 15 minutes to write down 10 goals is a great beginning.  For the artist among us, one can draw or clip out pictures from a magazine instead.  You can post the list on your refrigerator or bathroom mirror.  Others may prefer to spend some time evaluating last year, writing out values, and creating a detailed plan for 2013 like I have done.  Finding a buddy to share it with might help keep you motivated and encourage a friend at the same time. 

May 2013 bring you some great learning experiences and opportunities.  May you see an impact towards the values you hold dear and be an encouragement to those in your path.   

Elissa

 (also posted at fibromodem.wordpress.com/2012/12/ and in December issue of LIVING WELL with FIBROMYALGIA)

 


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