Wednesday, October 16, 2013

The anatomy of hope . . .

What gets you out of bed every morning and gives you enough energy to make it through the day ever since the day you were born?  What feeds your spirit so you make plans for the future, go grocery shopping, plan your next meal, and face the adversity that every day holds for you?  In spite of the difficulties that you face each day, what is it that makes you fall in love again, adopt a pet or plan a vacation?  To feel a whole array of emotions each day, including pain and anguish and yet get on your feet again and move forward takes energy that hardly exists for people with fibromyalgia, but you do that day after day.  That miraculous spirit that resides within us all is hope.  When hope ceases to exist we no longer have the energy to move forward in life and that leads to stagnation and a downward spiral.  Hope is a critical energy force that we cannot survive without and hope must be guarded carefully or our life force and spirit will begin to fade.

Many people don't spend much time thinking about hope until they are faced with life changing events that put their coping skills to the test.  Anyone that has lived to 90 years old understands this concept only too well, because sooner or later everyone loses physical abilities and energy, and most likely they don't feel well either.  Since hope is critical to survival it is one of those innate components of our spirit, but as we face more and more difficult life challenges hope can begin to dwindle and fade.

Taking good care of our spirit and the hope that feeds it is an essential activity every day.  Cultivating an optimistic outlook requires a commitment to problem solving and the belief that defeat is not an option.  We may have some temporary set backs, but we must have the fortitude to never stop moving forward.  When you have a temporary set back rely on help from your family or friends to get you back on your feet again.  I have found inspiration from perfect strangers that are willing to share their stories about overcoming obstacles in their life.  These stories are meant to give us emotional support rather than serve as a personal challenge to meet expectations of others.  The most powerful force in eroding hope is the feeling that we are alone and no one understands.  We are a gregarious people and we need each other.  Some people find solice and hope through their religion and their church.  Others find the renewal they need from nature.  We are all different in how we fullfill our common human needs.  Focusing on positive things in your day while minimizing the negative things provides a beneficial boost to hope.  The belief that we can overcome anything because we are fibro warriors gives us the energy to meet life challenges and preserves hope.  We cannot afford to allow negative thoughts to creep into our head -- that is counterproductive.  Avoid a victim mentality:  spending time blaming others for anything in our life leads to stagnation and a downward spiral.  Cultivate self-responsibility and accountability and you will feel empowered in your life.  Feeling as though you have no power or control over anything in your life leads to depression.  Find things in your day that bring you joy and enthusiasm for life.  When you smile, do it for yourself and not for other people.  When you smile you feel better.  Develop friendships with people that are happy, positive and have enthusiasm for life.  Their energy and spirit are contagious and will help you keep your spirits up too.  The mind is a powerful tool -- if you believe you can or if you believe you can't you're probably right.  Spending too much time complaining about the state of things can sabbotage your efforts to maintain a positive attitude and safe-guard hope.  It isn't beneficial to maintain relationships with people that bring you down.  You know who those people are because you can feel them sucking the energy out of you.  In addition, listen to your body and care for yourself.  When you have a flare, pamper yourself and don't fight it.  That doesn't mean giving in to it.  Make a conscious decision to do nothing but care for yourself.  You are number one, you know.  So know how to say "no" and look out for yourself.  You are the most important person to you.  And it's okay to cry sometimes.  Experiencing all of our emotions is important to emotional health.  It's what you do with those emotions that really counts.  If you find that you are crying more than smiling you may need to see your doctor and a counselor to treat depression and anxiety.  We are all able to be mentally strong, which doesn't mean that we don't need help from time to time.  Be sure that when you need help you ask for it.

Twenty years ago I lost hope.  I had a life altering injury with severe chronic pain.  I was in a chronic pain program and I was participating in a guided imagery meditation.  The meditation led me through a forest glen along a bubbling brook and then to a clearing that had opened up to a beach with a sea that ebbed and flowed up onto the beach and then retreated back again.  There was a treasure chest on the beach and when the chest was opened there was a beautiful glowing ball of light inside.  I reached into the chest and picked up the ball of light and rolled it over in my hands amazed at its beauty.  I suddently realized this beautiful ball of light was the hope that I had lost and it was now found.  That was twenty years ago and I still cry when I think of that moment.  That was the lowest point in my life; I never want to be in that place again.  So I spend every day mindfully guarding my hope and I do whatever it takes to keep that spirit alive and well.  My daily plan is to laugh a little more, to see humor all around me, to love more and to have empathy for others.  I am more aware when someone doesn't mean me well and I immediately cast those people out of my life.  It is also important to be kind with ourselves and others every day, because we are all dealing with life challenges.  Oh yes, I'm more forgiving too, because after all we are only human and that's a good thing to be.  Blessings and peace to you as you find hope every day and never ever give up!

Sunday, October 6, 2013

Coping with a chronic, invisible illness

I frequently read other fibromyalgia blogs and a recurring theme is the frustration that others don't understand this illness.  After all we don't look sick.  When I look in the mirror I see what others can't and I'm sure you do too.  And that's really okay, because do I really want to look sick?  I was talking to a friend of mine several days ago.  We had traveled up to Flagstaff together and the full day really exhausted me.  My friend stated that she was really tired after the day in Flagstaff and I attempted to explain how exhausted I was after the day, but that didn't turn out well.  She said to me, "Oh yeah.  Your tired is worse than my tired!"  I answered, "Yes it is."  She appeared to be completely annoyed with me.  I explained that people with fibromyalgia don't look sick and it's difficult for people that don't have this illness to understand the complete exhaustion we feel.  The reality is people that don't have fibromyalgia have no imagination for how ill we feel and how sick we are.  So once again I find myself resolving to never attempt to explain this to anyone that has not experienced this illness.  We are alone with this illness except for the support we give to each other and to ourselves.  We absolutely cannot count on our family and friends to understand this illness.  In fact, it turns them off.  After all, who wants to spend time with a sick person that incessantly complains they are sick?  Not very many people.

My strategy is to have a great deal of understanding for myself and my friends that suffer with a chronic, invisible illness.  The reality is if I want friends that are relatively healthy then I can't make a face and try to gain their sympathy.  I can't even try to gain their empathy; they aren't interested in giving me empathy.  My friends want to get together with me and have a good time and they don't want me to be a downer for them.  My husband doesn't want me to be a downer for him either and he's the closest person to me.  So, my resolve is to keep my misery to myself, but to care for myself every minute of every day.  That means when I'm unable to participate in an activity I just say "No".  I don't give a reason and I don't make excuses.  I just say "No thanks, but thanks for the invitation."  And when someone complains about how bad they feel or how tired they are I just snicker to myself and knowingly console them with the knowledge that they have no idea how tired and exhausted they could really be.

There is only so much we can do to educate those around us.  The reality is that if we persist in trying to get our friends, family and acquaintances to understand our illness the result is to just turn off everyone around us.  People in our culture like vibrant, young, articulate people.  I can't compete with that so instead I'm a good listener and people tend to appreciate that even more.  So I tell people that I have some deficits because I have fibromyalgia and then I let it go at that.  If they are really interested in me they will take the time and put forth the effort to find out what fibromyalgia is all about.  There is volumes of information available to people.  The truth is that the majority of people aren't really all that interested.  Since we cannot control those people around us we must just let it go and take care of ourselves.  I ask myself "How important are all those opinions anyway?"  Those opinions don't amount to a hill of beans.  There is only one opinion in the world that counts to me and that's my own opinion.  I frankly don't have the time or energy available to invest in someone else's ignorance.  So I happily go through my day and give myself the understanding I need about my ups and downs and I couldn't give a hoot about all those ignorant souls out there that just don't get it.  And it isn't a bad thing to put on a happy face, because we are just about as happy as we make up our minds to be regardless of our trials and tribulations.  Blessings to you as you go through each day with care and understanding for yourself!  Peace to you . . .

Wednesday, October 2, 2013

Fibromyalgia mystery may finally be solved

A good friend of mine shared this link with me that states the fibromyalgia mystery is finally solved.  How many times have our hopes resulted in sad disappointments?  It is my hope that the numerous A-V shunts that have been discovered in fibromyalgia patients will lead to treatments and possibly a cure.  The article only addresses pain and fatigue, which is just the tip of the iceberg so I am unsure of how other autonomic, sensory and motor nervous system symptoms come into play, but this is certainly worth reading and watching for follow up research articles.  Blessings to all of you as we search for the source of our illness!

Tuesday, October 1, 2013

Conquering the Pain

A zuni bear bracelet and matching earrings
Pain is quite a formidable foe.  It demands our constant attention, saps us of our energy, destroys our quality of life, turns us into grumpy people that no one wants to be around, and robs us of our life.  People with fibromyalgia have a daunting task to cope with pain that expresses itself as pins and needles, burning pain, sharp, shooting and stabbing pain, throbbing pain, body aches, dull aching pain, cramping pain, muscle pain, focal or global headache pain, pressure pain . . . have I described this accurately?  If you have fibromyalgia I'm sure you have additions to this list.  To sum it up it's total misery and fibromyalgia pain can prevent us from participating in activities that we enjoyed prior to the onset of this illness.  But never underestimate the power of the human mind.

Bead embroidery: a work in progress
The human mind has the capacity to overcome many obstacles regardless of how impossible those obstacles may seem.  The joy of learning is a key component for overcoming moderately severe or even severe pain.  This may sound too simple to be true, but it is.  People with fibromyalgia tend to be Type A personalities and that can actually work in our favor.  Challenges and learning something new exercises the brain and improves cognition to lessen the confusion, brain fog, and disorientation.  Learning when cognitive impairment is present requires a great deal of patience and determination, but as the brain engages in learning, cognition does improve.  Another component to overcoming fibromyalgia pain is fortitude.

My friend, Lori's, bead embroidery
A good friend of mine that has fibromyalgia and other chronic illness reminded me of how to overcome the pain and misery of fibromyalgia by introducing me to the world of beading.  I have found that beading gives me a creative outlet, provides me with social time each week with beading friends, and lessens my pain by engaging my brain with a new found passion.  I just love to look at all the beautiful beads and dream about what I can make with my beads.  The biggest problem with having a passion is having the sense to know when I need some rest.  Balancing activity with rest is the most important and beneficial tool that we can have in our fibromyalgia toolbox and it's a fine line between the two.  If we get too much rest we go downhill physically; if we get too much activity we go downhill physically.  It's quite a dilema and requires an astute balancing act, but with practice it becomes easier to know where that line is drawn. Balancing activity and rest is different for everyone and changes from day to day so no wonder this is a difficult task.

A set that I just finished this morning
If you want to lessen your pain and increase your activity, find your passion and balance your passion with other responsibilities and intentional rest periods.  You will feel better both physically and emotionally, you will increase your energy, and there will be more joy in your life.  Please send me comments about your passion and how that has helped you overcome the pain and other symptomatology related to fibromyalgia.  You may sleep better too!  Take good care and blessings to you as you face each day with fortitude, determination, and lots of patience
while you are discovering your passion!