Does the Pain EVER go Away?

For someone who is newly diagnosed with lupus, one of the first things he or she will anxiously ask is… “Will my pain ever go away?”  Though I am not a doctor, I can tell you with absolute certainty the probability of you never feeling pain again is the same probability of me never eating chocolate again – slim to none.  And, might I add, ANY doctor that tells you they can take your pain away for the rest of your life – is selling something.  Please, don’t buy it.  Because just like with Jack and the Beanstalk, those beans they are selling aren’t magic – they are just some plain, old, unromantic beans. So don’t sell the cow to buy them.   

With my work at Molly’s Fund, people inquire about pain relief probably more than any other symptom that lupus presents.  People write us regularly saying, “I am in so much pain, is this how my life will be forever?” And my response is simple, “Your pain may never go away, but it will get better.”  You may be wondering, “You just said my pain may NEVER go away, but it WILL get better?  Talk about a contradiction!”  

Let me explain – when you are first diagnosed with lupus or a lupus overlap disease, everything is new, overwhelming, and often all-consuming.  You are feeling intense levels of pain, fatigue and malaise.  You are bombarded with doctor visits, lab tests, test results, more doctor visits, treatment plans, medication trial and error, etc.  You wake up in the morning (if you sleep at all) and your pain smacks you right in the moon face.  Your pain, in Pain of lower backthe beginning of your lupus journey, is at the forefront of your mind 24/7 because your body hasn’t adjusted to this transition.  Once your body understands what this disease looks like and feels like to you, it learns to expect a certain level of discomfort.  And after time, the pain becomes familiar, you adapt, and you are able to create a new normal.  So, what used to be unbearable, will not overwhelm you because your body has become psychologically and physiologically equipped to deal with the pain.  Crazy, but true.  

In this blog, I will attempt to explain this process and provide you with tips on how to help you adapt to your lupus pain.  Because, let’s be real.  You are going to have to put your courage to the sticking place and do this. So let’s do this together.

PROCESSING THE PAIN

First, we have to acknowledge that we are but mere mortals and our physical bodies are not going to live forever.  Our bodies get injured…and they hurt, they breakdown…and they hurt, they age…and they hurt…some more. Living in denial about this fact of life, blinds us from accepting our current status. Second, we have to acknowledge that there are no guarantees in life.  As Forest Gump brilliantly stated, “Life is like a box of chocolates, you never know what you are going to get.”  Life is full of uncertainties. And the last time I checked, there are only two absolute guarantees in life: death and taxes.  

When we process our feelings about our illness and pain, we eventually realize that more often than not, we have no control over what happens to us. The only thing we can control is how we choose to respond to our illness and our pain.   Learning to ride the wake of the pain ship instead of swimming against it, will bring a state of peace and acceptance that not only will help you emotionally, but physically too.  

  • Acknowledge The 5 Steps

Finding out that you have an incurable illness like lupus, is certainly a loss.

These feelings of loss are valid and must be dealt with before you can move through to stage 5, which is acceptance. Everyone moves through these steps at different paces.

Here are the five stages:

  1. Denial
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance
  • Be Good to Yourself!
  1. Surround yourself with supportive people.  If you have great family and friends around you, this can be an important network to anyone with a chronic illness.  If your family or friends are far away or they ‘just don’t understand,” then try to find online or local support groups for other lupus or chronic illness sufferers,  like the ones here at Molly’s Fund!  
  2. Try to maintain a healthy lifestyle– In spite of the lupus, it is important to continue to be good to yourself, eat right, get enough rest, and exercise regularly.  It will help your pain in more ways than one.
  3. Just take one day at a time – why worry about tomorrow when all you can control is what you accomplish today?  It may help calm the overwhelming feeling of worry about all you need to do and just help you get through this day.
  4. Even though you have days that you will not feel up to moving around, try to stay active. Be engaged in hobbies, clubs, groups, yoga or tai chi or any other mind-body exercises.  This kind of engagement can really lift your spirits and make you feel empowered over your illness.
  5. Keep a ‘go to’ list of things that make you feel better, like a funny movie, music you enjoy, a special walk that makes you happy, hanging out with friends.  Keep that list handy for those tougher days. The mind/body connection is a very important factor in your well-being.
  6. Stay informed about lupus – the more you  know about your medical options, the more questions you ask of your physician and other  medical providers, the more empowered you will feel!
  7. Watch that negative self-talk. Replace it with positive self-talk.  We are all guilty at times of being our own worst enemy.  Unfortunately, over time, that negative talk can wreak havoc on our self-esteem.  Be kind to yourself, having faith in the knowledge that you are doing the best that you can on any given day.  Lupus is unpredictable and if laying low for a while (a day, a week, a month or several) is what your body demands, then that is honoring your body and your well-being, so be kind to yourself!

ADAPTING TO THE PAIN

Have you ever attempted to try a new sport or exercise? I remember the first time I tried yoga.  Let me tell you, it was not easy. I was clumsy, off-balanced, and very sore the next week!  I thought about never going back, but I wanted to see if yoga would improve my range of motion and muscle stiffness. So, I went back, and it was tough for a while.  But, eventually, I wasn’t feeling sore anymore!  And I wasn’t so clumsy.  And I was getting stronger and my balance was improving!  That my friends, is called adaptation.  And you can use it to help with your pain, too.  The principle of adaptation refers to the process that the body goes through when getting accustomed to a particular exercise, or feeling through repeated exposure.  This principle is how, after 26 years of living with lupus, I survive my day.  This is also how I am able to empathize and show compassion to others who are suffering, but I remember the agony of those first years before I was able to adapt to my pain.

EMBRACING YOUR NEW NORMAL

Now finding peace (and even joy) despite your circumstance is no easy task, especially if you were just diagnosed with lupus. Please believe me when I say, I completely understand and have been there.  So how do you attempt to find joy amidst disappointing circumstances? How do you find joy if you are grieving your past life?  How do you find joy if you are in constant pain? The answer is…you choose it. And you choose joy by moving forward with your “new normal.”
 
  • Start your day the right way… with an attitude of gratitude!
When you wake up in the morning, no matter how much pain you may be feeling,
say these words to yourself “I CHOOSE JOY.” Then, try making a mental list of 5
things you are thankful for. Author M. J. Ryan, who wrote the book 365 Health
and Happiness Boosters explains, “If you only focus on what’s wrong, you will not
experience joy. You will experience discouragement, depression, and low
self-esteem. But when you focus on what’s right about a situation—the exact
same situation—you’re increasing the possibility that you will experience joy
and high happiness.” So tomorrow, try counting your blessings – not your
calamities.
 
  • Praise yourself for who you are not what you do
For many who are diagnosed with lupus, a future change or loss of job may be
inevitable. This can be an incredible loss and a giant steal-joy. Making the
realization that your value is not in what you do, can take time but is essential to
moving forward with your new normal and finding joy. Author Max Lucado once
stated, “You are valuable because you exist. Not because of what you do or what
you have done, but simply because you ARE.”
 
  • Let go of the past  
When I was first diagnosed, I was 11 years old. I was a very active child and
loved to dance. I was the kid who lived at the dance studio, taking class several
nights a week. Then, I got sick and suddenly that was gone. I went from the
dance floor to a hospital floor…just like that. It was incredibly challenging making
the paradigm shift to finding new things that could take the place of my love of
dance. But in order for me to stay sane, I had too. I discovered dance in its
purest form is art, and art in all its forms (whether that be poetry, fine art, design,
music, theater) brings me joy. I moved forward embracing what I could do, and
tried to not focus on my limitations. Henry Wadsworth Longfellow once said,
“Look not mournfully into the past, it comes not back again. Wisely improve the
present, it is thine…” If you spend your time mourning what could have been and
focusing solely on your pain and limitations, you miss out on the beauty of today.
 
  • Welcome new experiences
Say yes if you can, even if your first instinct is to say no. After living with lupus for
over 26 years, I have learned that getting over the mental hurdle of stepping out
the door is a hard one, but is usually very rewarding. My motto is that I can be in
pain at home or I can be in pain out of the house, but at least I made an
attempt to be part of the land of the living. I guarantee if you make just the
smallest effort (maybe that means going to coffee with a friend, or walking your
dog around the block) you will not regret it. Don’t get me wrong – rest is important
and needed. However, welcoming a new experience and being there for
someone else is important and needed too.
 
  • Love thy neighbor
One of the best ways to break yourself of focusing on your pain is to focus on
serving someone else. A study done at the University of Virginia found that
merely witnessing acts of kindness, loyalty, and heroism created a significantdaughter and senior man in wheelchair on walking green nature.
elevation in mood and increased the desire to perform good deeds. According to
happiness researcher Sonja Lyubomirsky, PhD, those that participate in helping
others have a generally more joyful attitude. She states, “There are lots of
consequences that come from showing kindness that make you happier and help
you stay happy.” She adds, “…and being happy is the key antecedent to joy.”
 
  • Spirituality/Meditation
Personally, I cannot choose joy in my own life without the hope that there is a
purpose behind my pain. As Max Lucado once said, “A season of suffering is a
small assignment when compared to the reward. Rather than begrudge your
problem, explore it. Ponder it. And most of all, use it…” It is essential for me to
hold fast to the truth that my pain can be used for someone else’s good and that
my pain does not have power over me. Every lupus journey is different, but it has
been incredibly helpful to me to take time and pray or meditate in order to ground
myself in these truths. Because let’s face it, this world can be overwhelming.
Meditation is an excellent way to help silence the internal “noise” that may be
affecting you physically as well.   Anne Frank, who I admire deeply once said, “A
quiet conscience makes one strong!” Taking time to be still, be quiet, and take a
few deep breaths every day can help not only de-stress but re-charge!
 

CLOSING

To summarize, let me say this, “You’ve got this.” The pain is Hapiness from good workrough, this we know. The pain will get you down sometimes, this we also know.  But, you will adapt and grow stronger.  And one day you will be able to look your pain in the face and say, “Pain, why don’t you UBER your way somewhere else, you are not going to ruin my day.”

 
 
 
 
 
 
If You Have to Wear an Ugly Dress, Learn to Accessorize, Linda McNamara, RN, MBA & Karen Kemper, MSPH, PhD, 2011 Wheatmark Press; P. 105-106

 

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Article by : Kelli Roseta

Kelli Roseta is the Client Services Coordinator for Molly’s Fund Fighting Lupus and facilitates the patient and caregiver support groups. She is also a 25-year lupus survivor. Connect with Kelli at [email protected].