Wednesday, September 23, 2015

CHRONIC PAIN AND RESILIENCY


CHRONIC PAIN AND RESILIENCY

  

For Grace  (an organization passionately devoted to promoting better care and wellness for women) had  a University of Michigan psychologist,  Afton L. Hassett, Psy.D  speak at their 8th annual Woman In Pain conference in Los Angeles this September (2015). Of which, the  National Pain Report  published an article on her talk titled, "Positive emotions can help fight chronic pain". They stated her message was "quite simple --resilient exercises aren't going to make your pain go away, but they can increase the quality of life."  "When you feel happier, you do more and it puts you on an upward spiral."  And the National Pain Report also shared:
"She outlined a number of things that she recommends chronic pain patients can do to enhance resilience.
1.    Create a social support round robin: More social interaction and engaging with friends and even people you don’t know is a key step.
2.    Keep a Gratitude Diary: She suggests that your write down three things you are grateful for each day, and make sure there are three different things each day. “You start to appreciate everything from your family to sunshine.”
3.    Savor a Beautiful Day: Hassett says that chronic pain patients should set aside a block of time each day for their own pleasures. “It helps you focus on what you have.”
4.    Practice Intentional Kindness: Do one kind thing a day for yourself, a stranger and someone you know.
5.    Write 3 Good Things Every Day: Hassett said that concentrating not only the fact good things happened buy Why They Happened can promote resilience."

These ideas presented regarding RESILIENCE, are well founded. https://en.wikipedia.org/wiki/Psychological_resilience . I have implemented similar practices into my life even before my chronic pain invaded it. Personally, I had to refocus my constant cycle of thoughts of pain and dreading what it was doing to me. I was drowning in it!  I also feel that others can try to integrate some of these suggestions into their chronic pain journey and will find some benefits, as they are ready, able and willing.

However, one thing of great importance that was left out was practicing ones faith and drawing upon the many strengths found there that gives the majority of chronic pain survivors a solid foundation to hang onto and is in the forefront of survival for many! 

I feel many need to be aware of several things a chronic pain sufferer deals with in life to understand where they are at with being resilient.


AWARENESS OF WHAT WE HEAR
It was stated that the article covering this Resiliency theory led to a "dubious" debate by readers as reported by the National Pain Report in another article,  "Surprising Argument Over Chronic Pain Resiliency Erupts” on the National Pain Report website and their Facebook page.

I was perplexed when I read this comment by psychologist, Afton L Hassett, Psy.D, the National Pain Report  stated, "In a follow-up interview with Dr. Hassett in Michigan, she said she was surprised by the chasm that seems to exist between those embrace the resilience argument and those who see it negatively."
Between the “chasm that seems to exist” and the “dubious” debate that the first article caused I want to address both.  First of all, I'm not sure if "dubious" would be a good term to use regarding this topic. Although I agree with what Dr. Hassett is saying about using these techniques, I fully understand why many don’t find these helpful at all!
Better descriptors for them than “dubious” would be terms like, irate, annoyed, angry, disgusted, or irritated, For many of us chronic pain sufferers have repeatedly heard similar "positive” statements along our chronic pain journey!

Secondly, the “chasm that seems to exist’ is simply due to the fact that many chronic pain sufferers, who have been dealing with moderate to severe pain for months and even years, would equate what was said by Dr Hassett to these frequent statements, verbally tossed at chronic pain sufferers, by "well-meaning" acquaintances, friends, family, as well as many health care workers.

Statements such as, ‘If you would have a better attitude!" "Don't focus on the pain so much!" "Look on the bright side of things!" "Things could be worse!" "Focus on your blessings!"  "Try to be positive, listen to good music, and watch a fun movie! That'll take your mind off the pain!"  "Laughter is known to help pain!" The list goes on and on!  
These statements, as well as the teachings presented by Dr. Hassett, can appear to simplify what we should do with our horrendous chronic pain; it is like be told to place it in a nicely wrapped package and stick a pretty bow on top!

AWARENESS OF WHAT WE ENDURE
Most times the well-meaning, well wishers that say these things don’t have any idea of the plethora of activities we deal with to try and overcome our pain (constant doctor appts, multiple tests, horrible medication trials, behavioral, physical and occupational therapy appointments, alternative medicine, etc.).

Not only that, but many don’t understand the levels of loss chronic pain sufferers deal with. If they, or anyone in their lives, have never experienced the physical, emotional, spiritual, social or financial devastation chronic pain causes, how could they comprehend these depths?  Due to such lack of awareness, how would they know what is appropriate to say to one suffering?  Nonetheless, we are provided with these “positive”, albeit not so helpful, statements relatively frequently.  So, can you understand how a debate would ensue and why there is a chasm?

AWARENESS OF OUR LOSSES
It would be wonderful if there was awareness by others of our losses. Every single chronic pain survivor is suffering insurmountable losses in their chronic pain journey, as described in this article, A Look at Our Losses. These are ongoing losses due to experiencing the inability to accomplish what we desire with multiple activities and events we come across on a daily basis.


AWARENESS OF OUR GRIEVING
Not only that, but awareness that we are all at different stages of grief dealing with these losses.As described in this article,  Stages Of Grief With Our Losses. This grieving is weaved throughout our daily lives, at various levels, in relation to what it is each loss brings to our thoughts and emotions.

AWARENESS OF THE JOURNEY
Suffering with chronic pain is a very individualized journey.  It depends on many internal and external factors. Some go through it smoother than others, some get stuck and are unable to move further until they have some catalyst to help them through, and some, for various reasons, just aren't able to get through the stages and stay stuck in anger, depression, and negativity and grieve these losses by chronic pain for life. We see it in those around us!  We hear the experiences of those verbalizing their struggles in social media! No surprise here.

For it is kinda like dying! But not being allowed to fully die.


As stated before, the losses and the grieving are being over looked.  We need to get angry and grieve and weave our ways back and forth through the Elisabeth K├╝bler-Ross stages of grief. For some, that means dragging our positive side along with us, for others finding it along the way, and sadly, others may never find it.


AWARENESS OF INTEGRATING RESILIENCE
I feel it is a nature vs. nurture situation.  Those of us chronic pain survivors that are able to "embrace" the resilience theory either already had a natural “positive” personality or have integrated it into our journey from the beginning, use it as a survival technique as taught by someone- when we were ready to hear it, or are at the stage of grief (acceptance) where we can accept such statements and see the benefits of incorporating these strategies into our lives.
For those that are perceived as being “negative” about it all may not even be negative.  Of course there are various levels of negative people out there. Perhaps some just don’t know about these things, have not been able to integrate these things it into daily life or perhaps they are just pissed off and don’t want to. There are many reasons.
Some of us may have been trying throughout our journey to be positive and deal with all this the best we can by, "Focusing on good things." "Not constantly looking at our pain." "Looking at our blessings!" "Putting it in God's hands!" etc. For some it's our personality, gripping tightly to our faith!  We all have different survival techniques.
I remember walking out of a therapy session after having the “look at the blessings” talk. Yes, I am a woman of faith that has always tried to focus on my blessings; however I was not at that point in my journey (surprising to many that know me I am sure). I needed to be able to be angry and grieve at that time. I knew what I needed, however, the therapist didn’t understand me.  When my pain doctor asked what happened I simple said I wasn’t ready for it yet. I had some grieving to do and I didn’t know how long it would take. It doesn't work on anyone's timeline. Especially mine. I'd have been through all the grieving crap on day one and moved onto a happy, joyous life for sure. If only that were possible!
Positivity can be incredibly difficult to practice.  We can find peace and comfort for awhile, and then we lose it and have to struggle to get it back and maintain it. We all falter, fall flat on our faces and grieve horribly the losses we endure! It is a life that takes great strength and bravery to get up and live it!  Every!  Single!  Moment!  Of!  Every!  Single!  Day!
It was also stated in the article link that, "Everyone is resilient. It is a matter of how we can build it," she said. "It is not a substitute for medication or intervention, but there are some things that every person can do." 
I agree with that to a point. We can all try it. But the results can be as dust in the wind. The constant overwhelming, unbearable pain can wipe away all the positivity that had just shined upon us and blows it away in the blink of an eye!
Wherever we are in our chronic pain journey, I am thankful for those that care enough to reach out at the right time, with the right knowledge and awareness with wanting to truly help us along our journey to help to be resilient!  But, you see, there are many that aren’t aware of where we are or what we need. So we need to have patience with them and not become bitter. Yes, it can be hard to do!

As far as other chronic pain sufferers on this journey, it is up to us that are further along on this journey and have been able to obtain these skills to reach out a hand and let them know they can do it! They are not alone. We can be a light in their darkness. We have to be here for each other, for it can be a very lonely road if we allow it.


Saturday, September 19, 2015

CLEANING TIPS FOR EASIER LIVING WITH CHRONIC PAIN - PART 2

CLEANING TIPS FOR EASIER LIVING WITH CHRONIC PAIN  - PART 2

In the previous blog post (PART 1) we looked at the stages of cleaning for those with chronic pain, the stress, embarrassment, humiliation and the physical intolerance we endure. We discussed that to not have the ability to do what it takes to achieve what we would like, leaves us struggling, not just physically, but emotionally as well. We want to find contentment in having things look nice and orderly! 

In order to make things more doable for myself, I try to incorporate, as able, some time management, work simplifications, energy conservation and joint protections techniques taught by occupational therapists. There are many suggestions and ideas to look at, so I will cover these in several post due to the length of each post.

The first thing I will share is how I break down weekly cleaning into several days, as able. (Everything recommended is of course given with the “as able” clause, because many of our days just don’t go as planned and we can only do as we are able! 


Set Yourself a Schedule!
Breaking our weekly activities down into daily tasks is the first of many tips.  When I was a little girl my mom had a day for each task, laundry day, cleaning day, ironing day and shopping day.
Image result for scheduleFor those of us suffering with chronic pain we have to break it down into even smaller activities to make things doable. It may seem pretty simplified, however, as you well know, that is exactly what is needed!  Otherwise, it becomes overwhelming and leaves us wanting to give up before we even get started!

Setting a Weekly Schedule
This is part of a schedule I try to maintain: Monday - Pick up clutter around the house and putting where it belongs. I try to do this a bit every day.  (I do ask hubby to pick up his stuff and help)

Tuesday - Laundry washed. Dusting (not every week)

Wednesday - Laundry folded and put away. Wednesday evening – I go grocery shopping with hubby if I am able, if not he goes alone.

Thursday - Bathrooms-sanitize counter tops, tubs/showers and toilets

Friday - water plants, make phone calls (weekly) and do bills (once a month) I even do a bit of laundry. I hang what needs hanging and the rest sits in the laundry basket until I fold it the following week.

Vacuum – iRobot “Rosie” does this, or hubby does. Wash floors, usually once a month. I am physically incapable of vacuuming or washing the floors. It leaves me in bed for 3-4 days due to the nerve damage and other spine issues.

Image result for irobot on floor pic
You might consider incorporating a weekly schedule. Hopefully, if you don’t already do this, it will give some sense of how to go about making a big job into smaller jobs and be more tolerable physically, leading to giving us a sense of well-being and accomplishment. I know that this is not doable for many, but it can be for some.

I found these online for you to look at. Click on the titles if you want one.




 

You might consider filling it out with pencil so you can change it as you want as you figure out what is best. 

More tips to be provided in the next blog post!
Blessings!

CLEANING TIPS FOR EASIER LIVING WITH CHRONIC PAIN - PART 1

The Stages of Cleaning for a Chronic Pain Survivor


Daily living is demanding enough with chronic pain, but to even think about having to clean on top of it all makes it almost intolerable! That's without a doubt difficult for many of us! 

Stage 1: The Haunting: For many of us, the smudges, dust, dirt, piles of papers, toilets, showers, dishes, and laundry needing to be washed, folded and put away is always there…in our thoughts, in our line of sight…haunting us! 

What I really hate is when the floors get so ghastly the bottoms of my feet gather small pieces of debris as I walk through the house!  And if you’re like me, with nerve issues, those small pieces stuck to my feet aggravate my nerves shooting impulses all the way to my brain, infuriating me, who I must add, was aggravated already by the disorder around the house!

That sounds pretty dreadful doesn’t it!  Well, if you coexist with chronic pain and your house is in disarray, it pretty much illustrates what it can be like!

Stage 2: Getting out of Bed (Because it just ain’t gonna happen unless this step is done)!:  Just getting up out of bed, taking care of one’s self (bathing, dressing, doing ones hair, makeup, etc.) is a enough work to throw most of us back into bed to try and subdue the pain in our nerves and muscles before we can even think about enduring the rest of the day!
Image result for images of sick person trying to get out of bed

Stage 3: Procrastinating:  Cleaning is something many of us cut back on whenever and however we can.  Usually this act is committed without any thought or effort whatsoever!  That is uncomplicated!  We are extremely capable of THAT!  

Stage 4: Repeating Stage 1-3 all in one: Harrumph! That is until things get so horrible we become besieged by it all and end up tossing ourselves into bed, throwing the blankets over our heads and crying!  A bit much some might think…not for many…been there, done that!

Stage 5: Accomplishing the Task and Overdoing It: This stage accomplished to tasks all in one!  That is usually a good thing, right? When you are finally able to clean, and if you’re like me, you are well acquainted with what happens!  You most likely cross over that very thin line of, “Ohhhhhh, crap! I shouldn’t have done that!” This in interweaved throughout the cleaning process.

Stage 6: Arrival of Anguish: “Rebound pain” - as the physical therapist calls it! (define rebound pain link) It imprisons you in bed for days, pleading for recovery!  

Stage 7: Recovery:  “Recovery” for someone existing daily with chronic pain is defined as, “a lower level of pain that is unbearable; although unbearable, it is more manageable than the current level of intolerable pain one is currently suffering from. (I made that up! Pretty sad isn’t it?  But, you know exactly what it means!) It leaves you praying and wishing for the lower level of pain, the pre-cleaning pain, which you tell yourself you will be thankful for.

Stage 8: Starting over at Stage 1:  Sounds pretty pathetic, eh?  Sadly, this is reality for those of us surviving chronic pain.  After suffering all this, we then proceed to persist on this endless cycle! Because if we don’t do what is required, it won’t get accomplished! 

The Inner Turmoil of it All
How does one even think about taking care of one’s home when the pain is so excruciating? For a Type A (add a link for definition) person like me it can bring about a lot of stress.

Not only does it set off stress, but many of us are embarrassed and humiliated to be incapable of performing what others (others, defined here as “those without chronic pain”) perceive as an uncomplicated task.

Honestly, those uncomplicated tasks are tremendously complicated for many of us suffering chronic pain.  Just think of all the different activities it involves:  lifting, bending, reaching, twisting, stretching, pushing, pulling, and repetitive movements.  These movements can seriously affect even those not suffering chronic pain!  Trying to complete these tasks for those that do suffer is beyond daunting.  I'm worn out just writing about it!

On top of the stress, embarrassment, humiliation and the physical intolerance we endure, I have witnessed many express how they demean themselves for not being able to care for one’s home as they use too.  For many of us, it is a pride issue.  There’s nothing wrong with that. It is our home!  We find contentment in having things look nice and orderly!  And to not have the ability to do what it takes to achieve what we would like, as things use to be, leaves us struggling, not just physically, but emotionally. It is really a loss of a part of our selves that runs deep into our hearts. This is a tough reality for many of us.

What to do?

So, in order to achieve having homes our hearts desire and defeat some of these horrendous emotional and physical effects of cleaning, we need to try, as best we can, to incorporate some techniques into our days to make it easier on our bodies.  Hopefully, this will also help with lifting our hearts and making us not feel so defeated! 

There are different ways to achieve the same task. I try to incorporate, as able, some time management, work simplifications, energy conservation and joint protections techniques taught by occupational therapists to make tasks easier and more doable.  

In my next blog post I will share the first of several ideas to be presented. (PART 2)

Hopefully, you will find these suggestions and tips manageable and helpful in your daily life with chronic pain!
Blessings!

Tuesday, September 15, 2015

THE INNER BATTLE

THE INNER BATTLE OF CHRONIC PAIN

As I was going through some of my notes while working on a new blog post to published, I came across what I wrote one morning after waking up from a dream. I guess it could really be described as a nightmare. It was so real and so vivid! I believe many can relate to the pain being there before you even wake, in your dreams.  I know many can relate to the inner battle of wanting others to understand, wanting to explain it so they can, but finding the words to describe it is very difficult, for you know others just can't understand it unless they have it. But then you open your heart and try. And then there's some passive, shallow, unbelieving response. Or worse yet, no response! Leaving you feeling even more empty and naked.

THE INNER BATTLE 

I woke up again in excruciating deep, stabbing, throbbing, electrifying, gripping pain. It was once again in my dreams throughout the night. Wherever I went! Whatever I did. It was there, overpowering my body. Leaving me striving, gasping and straining to do whatever it was I needed to do. Haunting me! There was a mission I had to complete, but unable to. Working, and walking! Wandering and still walking. Extreme exhaustion! Never reaching where I needed to be. I was lost. 

No familiarity. Endless miles to go. I tried running, but could not. I couldn't breath. No one able to help me. As I kept silent, not asking, not letting anyone see I needed help. Not letting anyone I passed know I was lost! Yet when I finally got to where I needed to be I was left with emptiness!! Sorrow. Grieving inside.

Although there was great celebration going on around me, I was at a loss to it all. I stood there, all alone among this celebration. Someone angrily said to me as they walked away, "Where have you been? We had to prepare all this without you! What's the matter with you!"

I cried inside.  I tried to get there to help.  Yet I say nothing. Not showing my pain. I hide it. 
I don't want them to know this overpowering presence.  I want to protect them from it. I don't want to see pity in their eyes!  But yet, I need to be understood. So I try to put it to words. Words that can't even begin to paint a picture of the darkness this pain leaves me in.  I want to be understood!!!

I feel naked trying to reveal what I have no control over.  I try to explain the depths of this hell!  I open my heart and share.  I stand there and wait for their words.  Words I am hoping will speak to my grieving.  Oh, how I long to hear words of encouragement and love. Words of hope!

But then the only response I get is silence.  My soul gasps! More silence.... My heart melts into grief. Can you hear the silence? Can you feel the silence???  A dream? It is a Nightmare. 
Did I wake up?  Am I still sleeping?  Is this horrendous, 24/7 pain truly still here? Hovering like a dark evil presence. Encompassing my being, deep into my bones, overtaking my mind and yet even deeper into the depth of my soul!  I cannot get away from it, for it goes where I go. Always there, haunting me. Haunting my thoughts. I struggle to rid my self of it!  Of the responses to it.
Yet it is still here. Yet there is still the silence. The loud, soul piercing silence!

Wednesday, September 9, 2015

FALL EDUCATION AND PREVENTION (PART 2)



FALL EDUCATION AND PREVENTION (PART 2)

One of the subjects the Invisible Illness Awareness Week page asks us to blog about is "what advice would you give someone recently diagnosed." I am very passionate about fall education and prevention for all those living with an invisible illness due to the high percentage of falls and injuries that occur! I hope you are able to stay safe!

In my previous blog post,  FALL EDUCATION AND PREVENTION (PART 1)  I discussed research findings regarding falls and many physical factors that cause us to be  high risk for falls. I strongly believe that being aware of what can potentially lead to a fall and the injuries that can be sustained is very important! It is also necessary to be aware of what we can do regarding our physical conditions, as well as changes in our environment, to keep us as safe as possible and potentially prevent a life altering tragedy.  So, in this article, I will cover some interventions that you can implement to decrease your chances of falling and keep you safe as possible. 

Remember, as a part of our new “normal” of living with chronic pain, not only do we all need to be aware of what we can do to keep us living as functional and safe as possible, but we all also need to share this information with others to help educate them to deal with similar risks of falling.  Please share this information to help keep others as safe as possible! It could save their life.

Environmental factors around our homes that can increase our risk of falls:
Be aware! We all need to take a look around our homes, as well as wherever we are, to see what potential dangers are around us and know the changes we need to make to keep ourselves safe and hopefully free of falling!
  • Throw Rugs-can be dangerous, tripping on the rug or the rug slipping can lead to a fall – you should seriously consider removing throw rugs.
  • Electrical cords-from lamps, extension cords, computer cords, phone charging cables, etc. going across where you walk should be removed. They can cause you to trip.
  • Items lying around on the floors in your pathway-books, magazines, papers, shoes, clothes, towels and any other items lying around should be picked up off the floor to keep you safe and free of falling.

Monday, September 7, 2015

FALL EDUCATION & PREVENTION (PART 1)

FALL EDUCATION & PREVENTION (PART 1)

One of the subjects the Invisible Illness Awareness Week page asks us to blog about is "what advice would you give someone recently diagnosed." I am very passionate about fall education and prevention for all those living with an invisible illness due to the high percentage of falls and injuries that occur! I hope you are able to stay safe!


FALLS
Does just seeing that word bring about a frightening memory for you? You are not alone!  It frightens many people!  With good reason!  Falls occur frequently among those of us with chronic pain.  Injuries obtained from a fall may have even been the origin of your chronic pain, or your chronic pain may have caused a fall.  Either way, falling has negatively impacted many lives!

Working in Occupational Therapy for almost 25 years, primarily with the elderly, I have experienced treating firsthand many patients that suffered moderate to severe injuries due to falls (various head injuries, broken shoulders, broken arms, broken pelvic bones, broken hips, and legs, etc.).

Not only that, but over the past five years, being involved with several spine surgery and chronic pain support groups, I have been a part of many discussions with various ages of people that have reported falls, as well as the resulting pain and injuries. Unfortunately, statistics show many of these injuries  may have been preventable!