Another day…..let the scales tip

September 23, 2012

In my dream land I would find the balance – perhaps that would be all too boring.  I am happy to report I did great on my exercise this week – yoga class, P90X yoga, cardio and 3 resistance training at the beginner level, 3 days of running/walking and 2 days playing racquetball.  Ok – perhaps I am over the top, and paying for it.  For this I take the weekend off – well sorta – 4 games this weekend where I am the assistant coach.

I look at the piles on the coffee table.  At least 20 books waiting for me to read/review.  About 6 of them I haven’t returned to the library because I want to blog about them.  Thankfully with renewals I can have about for about 12 weeks, unless others are requesting the book.  The laundry is in the dryer, so some housework is being done.  My husband even made the bed, something in which is on my “what’s the point” list.  I hate tucking my blankets in anyway.

I hate the idea of scaling back on the exercise.  I feel really good as far as energy level and outlook on life.  There are some moments I feel really up, bubbling with energy, talking a bit excessively, and radiating joy where I go.  Love that!  Fortunately I can keep up – though my skills in racquetball need some work.  On the down side, my poor knees are going in revolt.  What is preventing me from forging ahead isn’t fibro but my pathetic knees.  I tried to limit the hill running, though I think when the endorphins kick in I can’t feel the pain, so what I do is push myself a little too much. Ooh yeah, love the sprints too.  Doing the squats that seem to strengthen my knees, may not help either.

My dream of being medication free is still on the back burner for now.  I am hoping to reduce again, if I can keep myself active enough without putting myself in bed for a week with illness and/or injury.  I am content with the level for now, but in the general health outlook, the exercise and food seem like the best place to focus for now.

I am learning to use my laptop as intended – on the lap. This is helpful when I continue my ice and heat treatment.  The ice really helps with the healing especially in my knees.  I am trying to ice and heat 3x a day, though 2 seems to be more accurate.  A great way to gain down time.  My cat Jet, loves it.

One other benefit to exercising with fibro, is it forces me to eat better.  It appears that my stomach can tolerate less unhealthy food when I am more active.  I crave food like salads, which to me is a rare thing indeed.  Still love ice cream, but tends to make me sick the next day.

So the week ahead awaits me.  Another opportunity for balance in the life of the fibro patient.  I may need to attempt some modifications to my exercise routine this week, such as more walking and less running.  If I am not able to have enough cardio, I may want to try some swimming one of the days.  I will need to push myself a bit to do the needed but less thrilling chores.  Though at times I feel a need to rest, other times I just hate cleaning the kitchen every day.

Thanks for reading – time to change the ice.  Like everything else, moderation isn’t always my forte.


Why the 12 steps for Chronic Pain

July 10, 2012

Why use 12 steps for chronic pain recovery?  It doesn’t seem to make sense that I would compare addiction to dealing with chronic pain.  Addiction seems to be self induced, self focused, obsessive, and destructive.  We often see a visualization of a drunk homeless man begging for “food” that would go towards alcohol.  We imagine the loved ones we knew who lied, stole, and rationalized their habit, while making everyone around them suffer. 

The Medical Dictionary defines addiction “as a habitual psychological and physiological dependence on a substance or practice beyond one’s voluntary control.”* It doesn’t mean that a person can’t always control the use of the drug/behavior, but they continue to use more or more often of the drug/behavior in spite of consequences and/or a desire to stop.   They often are compulsive and use the drug/behavior regularly as a way to cope with life’s demands. 

Chronic pain has similarities with addiction.  It is something that is beyond our control, can be all consuming and can drive us to do things we hadn’t thought about before.  A person with an addiction will seek more and more for greater high, and a chronic pain sufferer may seek more and more for greater pain relief. We tend to have shame, may isolate, feel alone in our experience, and may focus on pain relief as the cure to all things being good again.  Our thoughts and emotions can contribute to our addictive and pain tendencies and the intensity in which we experience them.  Most people experience addiction tendencies and most people experience pain in their life time – the degree in which we experience them is what may make us feel unique. There are consequences with chronic pain, and it requires a mind changing (and possibly spiritual) experience to make us whole again even if we still have the physical pain.  People with addictions have to learn how to live in the world in spite of cravings and/or giving up something that initially brought relief.  Outsiders may look down on chronic pain sufferers as they would with people with addiction, wondering what they did to create such hardships and why they can’t make themselves well again.  Those with chronic pain and addictions do not cause themselves to be this way.  Certain actions, genetics, experiences and behaviors might have contributed to their vulnerability, but few would volunteer for this path. 

 Chronic pain in itself is not an addiction accept in cases of self induced pain like cutting.  Though our body adapts to the pain we experience we do not need more pain or less in order to function.  People are generally not drawn to seeking pain, and we can’t make the choice of whether we will have pain.  We don’t create the habit or the compulsive activity, the pain found us.  Those who take pain medication are also not automatically people with addictions.  Though some of the patterns and physical need might be similar, they don’t necessarily develop the compulsion or obsession of the drug to give complete relief. 

When we begin to go from a person experiencing pain to a chronic pain sufferer, something changes within us.  Many people are drawn to various addictions to escape the pain, or pain relief methods gradually become addiction.  We can feel discouraged because we cannot control our pain or make it go away.  Often we find ourselves searching for understanding, evaluating our values and priorities and looking for something to hold on to.  Looking at the 12 steps offers a way to surrender to something greater and bring inner wholeness to guide us in the path ahead.  By looking into our past, our relationships, our hurts and our harms, we are able better to cope with the times of solitude and bring greater peace into our lives.  I believe the 12 steps can be used as a tool for greater awareness, joy and spiritual growth, in helping chronic pain sufferers have a more fulfilled life.  The 12 steps are not the only solution, the only path, or perfect in their origin.  Yet, as a person with chronic pain, it has offered me hope, wisdom, light and greater purpose for the journey. 

* addiction. (n.d.). The American Heritage® Stedman’s Medical Dictionary. Retrieved July 10, 2012, from Dictionary.com website: http://dictionary.reference.com/browse/addiction


Medication reduction

July 7, 2012

Medication is one of those topics that I find more difficult to talk about.  I feel more shame and frustration at the need for medication in order to function.  The cost, the hassle, the side-effects, the pill take schedule and the politics of it are all reminders that something in my life isn’t right.  Like many things in life it can be a love and hate relationship.  I love that I have options that can give me some relief, but hate all the other parts to it.  I cannot imagine living a life with a high level of pain constantly.

Is it really possible to cure pain with healthy measures alone?  I have read numerous books and have heard an abundance of people claim that they have found the cure for various elements and diseases.  I am also aware that there are just as many people who continue to struggle in spite of the effort to do anything possible for a cure.  I know I feel better when I continue to try new things, as it brings hope that someday I may be pain-free.

I am currently trying to wean myself slowly off of my pain medication to see if my body has adapted to the drug for pain relief.  In the past, this has resulted in a clear reminder of why I am on the medication (because my pain level is too high).   Though I strongly believe many people need pain medicine, I can understand how a body might adapt to something that one is taking regularly.  similar to what I experience because of my strong desire for a good cup of coffee.  When I have coffee regularly my body needs and craves the caffeine.  Without it, I have headaches.  I am willing to continue to drink my daily (or two) cups of coffee because I love the taste and there are benefits to caffeine.  With the pain medication I am currently on, I doubt there is any medical benefit other than keeping my blood pressure low because I don’t have the same level of pain.

I have currently reduced my medicine by more than half of what I previously have taken.  A few weeks ago, I started my “experiment” in medication reduction.  I had been thinking about trying this for months.  When the pharmacy accidentally gave me the regular pain medication (not time release) I thought this would be a good time to try this experiment since I could cut the pills.  I also was motivated by the drastically lower cost for the medication.  Initially I didn’t realize I had a different medication until the pain relief wore off after 4-6 hours.  I started by cutting them in half so it would work similar to what I was used to.  I had hoped to only take medicine 3x a day, but found that my body did better when I reduced the amount verses extended the time I take the medication.  When I attempted to wait 8 hours, the last few hours were pretty dreadful.  In the past I have experienced changes in various medications, so I understand somewhat how my body adapts to withdrawal.  I appear to be sensitive to medicine since I have greater symptoms on low doses than most people.   I am trying to keep myself active so the endorphins will hopefully kick in to give some relief.

Surprisingly after a few weeks, I am finding my body is adapting to lower medication.  The evening is much harder as it seems the pain signals are in higher gear.  I can only sleep on my stomach, as my back is in too much pain if I sleep on it.  I have never been able to sleep on my side as both my knees and back seem to hurt in this position.  As when I went on the medication, I find that I feel a bit nauseated especially when I haven’t eaten.  I also felt sick when I went on a hike immediately after taking some medicine.  I generally do better in the middle of a dose (I take something 4X a day), and find this is a good time to exercise.  If I exercise, it reduces my pain level.  Most of the time I can make it through the 6 hours without a great deal of pain, but occasionally the medicine seems to wear off before the 6 hours or I wake up with intense pain.  As I continue to reduce the doses, I may increase to 5X a day.  It is rather funny to watch the pills get smaller and smaller.

Though I am hoping to completely wean myself off of my pain medication, I really do not know what the end result will be.  If my pain level becomes too high for too long, my blood pressure increases, my energy level decreases, and I become more depressed.  The constant intense and all over pain is more than I have been able to handle in the past.  I love being on less medication, am saving lots of money and feel more alert.  Unfortunately taking medicine 4x a day verses 2 is problematic with activities, trying to be private, and sleeping through the night.  I feel grateful that so far this journey hasn’t been as difficult as I imagined.  At the same time, I anticipate the complete withdrawal may be more difficult.  I can feel the hope stir up in my soul of the possibilities.  I pray that my body and my Gow will bring forth some healing power.


Goals Rearranged: Reflections on 2011 Goals

January 24, 2012

January is a month of new beginnings and reflections.  I began the year looking over my value list of what matters most to me.  This led me into reviewing the goals I made in the past, and adding or taking away goals I have completed or no longer seemed relevant.  Having a chronic illness can be challenging, but it will never take away my desire to dream.  Two areas that stood out to me were my occupational goals and exercise goals.  These were two areas that I wanted to change in, yet it wasn’t exactly how I planned.  What could have looked like failures, in reality were fulfilling my goals, just in a different way.   Living with a chronic illness requires a lot of adaptations.  Learning to recognize the real value in situations and the having a positive outlook, keeps me moving forward even if the path is down a new road. 

When I made my goals for the year 2011, it included many occupational goals.  Having worked at my job as a vocational consultant for only 6 months, I was looking forward to learning more about the field, becoming more savvy in social media, and building relationships.  Unfortunately shortly after my goals were made, my job position and hours were reduced significantly.  Since the explanation for the changes didn’t make sense to me, I was being treated differently than other people, and the standards of procedures were ignored, I began researching about discrimination in the workplace.  I later wrote about some of what I learned on my blog.  What I thought would have been a big part of my growth in 2011, became something else entirely.  I saw a different side to disclosure in the workplace, and how sometimes this can create more tension and mistakes rather than build a better support network.  I also became stronger, having to face my own vulnerability, and make decisions on what it is I want to stand behind, or when and where to be silent.  I had to adapt to the reality that I am no longer a career woman (I quit my job 6 months later, when things continued to decline) and how this effected by identity.  However, I do see that my initial goals were still met.  I did become more savvy in social media, and created several websites, one for my soccer teams I co-coach and another on chronic pain.  I also learned a great deal through my experience, and was able to see both the positive and challenges of working with a disability.  The clients that I met through my job, have changed me to the core.  I have seen persistence, hope and joy through my clients, and how the right support can make all the difference. 

My world of exercise and health were also quite diverse in 2011.  When I went back to work, my standard exercise routine was rather sketchy.  I went to yoga periodically and occasionally lifted weights.  At the beginning of the year, I teamed up with a couple of girl friends, and trained to walk a ½ marathon.  I found that walking wasn’t as difficult on my body, and the gab time was good for my mental health.  I also tried filling in on two team sports – basketball and soccer.  The basketball team experience was rather disappointing, as I wasn’t aware of positions and where to be, and the team captain wasn’t too happy with a newbie who was short.  Soccer however, was so much fun and quite the workout.  The team was supportive, and I at least knew the game better from years of coaching my daughters.  The most difficult part was driving to the game that was located on the other side of town.   No one knew how much it meant for me to have this experience of being part of a team, if only for a couple of games.  Having never played as a kid, it was something I always regretted.  I realized as an adult, this is one dream I could recreate.  Even with my health challenges, I accomplished something big, by taking the risk to be the new kid at a new sport.   During the year, I also kept active by helping coach in soccer.  My husband and I coach together and often would play and workout right along with our kids.  When I couldn’t find the time or energy to exercise on my own, participating in four soccer practices a week really helped keep me somewhat fit. 

As I prepare to review and write about my goals for 2012, I will keep in mind the importance of flexibility in my goals.  Life isn’t always simple, and there will be lots of detours.  As I continue to see the progress I make, it will give me the strength and courage to continue striving towards my dreams.  Perhaps along the way, as I reflect on my values, I will realize the dream I had, is exactly the place I am standing. 


Discrimination in the Workplace

December 8, 2011

What happens when disclosure goes wrong?  When I started my disclosure series, I didn’t anticipate including an article regarding discrimination in the workplace.  With all the protection and awareness regarding equal rights, one wishes to be hopeful that discrimination is a rare event.  Unfortunately though, when there is disclosure or an apparent disability discrimination happens.  It can be difficult to determine whether this different treatment is something that qualifies as discrimination.

Laws are put into place to protect employers and employees.  It is always important to understand the local and federal laws and guidelines when you have a disability.  It is also helpful to understand your company policies and/or other contracts in the workplace.  If you need clarification on policies, it is important to ask your human resources representative (ideally in writing) and document whenever possible.   Many people may need greater understanding of the laws, and will want to consult a lawyer and/or the civil department to have a better grasp on its impact for them as a person with a disability or for the employer who hires them. 

Communication is always key to solving problems and another means of protection for everyone.  It can be difficult to know whether asking questions or stating complaints can be helpful or hurtful when dealing with working relationships.  In a larger company, a human resources employee can answer questions and it probably won’t affect the working relationship.  In a smaller company, the person dealing with human resources may be your boss or co-worker, and questions may create conflict for the person with a disability.  An employer might feel accused and deny or rationalize any wrong doing without even taking the time to listen to the complaint.  Often times, people do things that might look like discrimination, but it is more related to lack of information, discomfort, lack of interest, or something else entirely.   Most people do not want to cause others harm, and often a conversation can make people change.  Unfortunately for some, a conversation may just make things worse, and result in a power struggle or they will attempt to help, but don’t follow through or change their behaviors.  As an employer, it is very important that you take their complaints seriously and consult others for input.   Keeping records of such statements can be helpful for everyone if a formal complaint is made at a later date.    

Feeling like you are discriminated against can be difficult emotionally and physically.   It is always helpful to have outside support and people to process with that you can trust.  This may be a family member, a counselor, a lawyer, a support group, and/or a friend.   Often we can sense things that are going on, but may not be able to quite articulate if it is actual discrimination or whether we want to address it.   Many people, on some level, will have an emotional reaction to someone with a disability, and this is easy to sense when it is aimed in your direction.  Learning how to react to this can help build bridges.  However, when their biases result in different treatment that causes harm, more specific communication is generally needed.  If communication doesn’t work you may want to take other actions.  This could be filing a complaint, seeing a lawyer, look for a new job, observing and documenting, or some other option.  Having people around to help you see your options and validate your experience can help ensure you make the best choices that work for you.

Being accused of discrimination is difficult for an employer.  A lawsuit of discrimination would hurt a company’s reputation and cause financial harm.  The supervisor might lose their job and/or have to go through an extensive evaluation of their actions.  Taking the time to work through the issues, whenever possible, is always advised.  Most people want to be treated well, and legal action is generally done when nothing else works.  It is helpful to understand clearly what the person is looking for, and how specifically you can make it better.  This may require listening to a lot of venting, and probing gently for clarification on what can be done.  If needed, a mediator or human resources personnel might mediate to give a different perspective.  It can be useful to have someone they trust sit in as well, to aid in reaching an agreement and/or understanding.  Consulting with others to receive legal and general feedback can give guidance on questions to ask, and assist in processing through the employer’s own emotions.  It is ok to have conflicts with a person who has a disability, but important that the same protocol is followed as is done with other employees.    

Discrimination can diminish if we all choose to look more intently at the subject of discrimination.  When we take the time to see how we treat certain people differently, we are on the path to making changes.  All of us have biases that impact what we do.  Ignoring these biases, however, can cause great harm especially when we act upon them continuously.  The best way to change our own biases is to talk about them and confront them directly.  Often this involves spending time with the people we are most afraid of, and learning to treat each person as an individual.  Even in the most challenging cases, we always grow from these experiences as we choose to turn towards something better.  With greater awareness, we can proactively make our work environments more satisfactory, where we embrace our fellow man and see the unique strengths we each bring. 


The Fibromyalgia Diagnosis

October 4, 2011

For six years I have lived with chronic pain and fatigue without having a clear diagnosis.  Different doctors had different ideas of the cause or possible diagnosis such as fibromyalgia, peripheral neuropathy and/or myofascial pain.  Various testing was used to look for abnormal blood work or physical characteristics as well as medications they might determine swelling or other problems.    The continuous normal results brought about a greater focus on pain management and less on the potential cause of the problems. 

Having a firm diagnosis didn’t seem to be an issue as my actions would be the same regardless of the label.  I found it helpful to put a limit on my search for a cause, as my doctors were diligent in helping me reduce my symptoms.  I would continue to do research, exercise and try alternative treatments along with medication adaptations as needed.  Even though it wasn’t clear what I had, I did a lot of reading on fibromyalgia, chronic fatigue, myofascial pain, MS, and Lyme’s disease as it would increase my knowledge of coping skills and treatment possibilities for various symptoms/diseases.   

My identity of being someone with chronic pain felt inadequate.  Chronic pain is a very widespread problem with a great deal of variation.   It felt simpler to speak of my chronic back pain, as this was my greatest symptom and where I often needed the most adaptation.  However the fatigue and widespread body pain also contributed to some drastic life changes.    Pain is very subjective, so it could leave me and others wondering if my perception of my pain level was over exaggerated. 

Having a diagnosis is necessary for receiving services and treatment.  In our society, the doctor’s diagnosis is crucial for all kinds of services.  For disability applications, employment services, medication, and treatment, people want to know the cause and have it verified by a doctor.  My doctors have always been good about sending the necessary information and reports for my medical treatment, so I never checked into what specifically was being communicated.  As I began to seek outside services, such as employment and legal protection, I found I needed to verify the diagnostic label, if there was one, for my symptoms.  Surprisingly, doctors don’t always communicate this information.    

For years, I was diagnosed with Fibromyalgia in my medical chart.  I have heard of this possibility many times by different doctors, but never had it confirmed as my diagnosis.  In my mind, and that of many others, this is a difficult diagnosis because of its variations and often “normal” lab work.  Though I could see I met the criteria, I didn’t like the psychological stigma it also carried.  Initially I was extremely resistant to considering this a possibility, as I was looking for something I felt was more concrete.  As time went my I became more open, and found I would prefer this “club” to the “chronic pain club” as it represented my struggles much more accurately. 

In many ways I feel as if I have a new identity that I haven’t quite integrated yet.  I find myself hesitant to say “I have fibromyalgia” and realize that I still have shame over my own symptoms that I see as inadequacies.  I also feel a degree of relief because of the support of my doctor, and having a label that can help me receive further support.  This gives me a greater sense of community as the fibromyalgia organizations and support groups are numerous.   Having fibromyalgia is part of who I am, yet it isn’t the complete picture.  My assets, strengths and abilities haven’t changed because of this disease or because of my diagnosis. 

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face.  You must do the thing which you think you cannot do,” (Eleanor Roosevelt).  Today, I will take rest in the assurance that having a diagnosis will guide me in taking steps to a forward focused on what I can do.  

Elissa


Pain and Depression/Anxiety

July 25, 2011

Depression and anxiety is common for people with chronic pain.  Imagine being in pain for months or years on end without hope of recovery.  It can be difficult to become motivated, when regular tasks require significant effort and fears about the future become overwhelming.  Medical appointments and prescriptions are costly and often involve ignorant and uncompassionate personnel.  When the body becomes warn down it can often intensify or trigger anxiety and depression in the most secure and happy individual. 

It is important to recognize the possibility that you may have to treat both the pain and the depression and anxiety.  It doesn’t mean that they have caused their pain by their thoughts, but that constant pain can contribute to a melancholy that is difficult to alleviate.  Pain can cause depression because of the losses, the potential inactivity, and strains on relationships and finances.  Not knowing what the future will hold, and navigating the medical system can increase anxiety. 

Since I have had chronic pain, I have experienced various levels of depression and anxiety.  I can notice the difference between a bad day, when my mood can elevate quickly by calling a friend or walking outside.  There are other times when the mood lasts for a week or more and I feel discouraged and unmotivated.  I may still enjoy some activities, but when the activity is done, I continue to fight the melancholy.  In my worst moments, I have had thoughts of suicide.  Fortunately for me, these are just random thoughts and escaping type of fantasies and they don’t tend to last long.  Anxiety tends to be more prevalent especially when dealing with the medical world, work, and relationships.  I worry about what other people will think and if I can meet their expectations.  I have always had a tendency towards both depression and anxiety, but this has increased as I battle to keep my pain at a manageable level. 

Dealing with depression and anxiety is so individualized that it is difficult to find typical solutions.  I recommend that people learn about depression and anxiety so they can be aware of the symptoms and when they need to seek professional help or should recommend help to others.  Depression and anxiety will increase the pain, and make life more unmanageable.  If they seem to be unproductive, unmotivated, discouraged, anxious and/or sad, depression and anxiety may be a factor.  Asking questions with compassion can give you a better idea of what is going on and give them assurance of your support.  Finding resources for them (and yourself if needed) is the best option for treatment. 

 


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