Not the Original Plan by guest Judy McCleary

The-best-laid-schemes-of-mice-and-men-often-go-awry-e1336407162622To be knocked down by a serious condition or disease is not the way most would envision as life for themselves. Suddenly you find yourself unable to care for yourself, accompanied with debilitating pain.

This situation has many dimensions…depression, anger, disbelief, reliance on someone else or many others to provide care and basic needs.

And yes, sometimes you are hospitalized and barely breathing.

I cannot imagine being in distress from early years as Sarah Needles in her recent post here –middle age was soon enough, if it had to be!

Active and healthy at age 38, able to run, exercise, be in control of my well being —I was struck down overnight with knees and feet swollen, gouty, inflamed and my neck frozen straight. Every joint was fighting me.

Suddenly, screaming in pain – (no not poised )– I had ignored symptoms, excessive fatigue and muscle aches, as I kept pushing and running my routine trail.

Diagnosed with psoriatic and rheumatoid arthritis, I devoured steroids for pain while frantically reaching for relief. I have never lost hope of the cure!   Still no cure… after 40 years, but I continue to have hope and will never give up!

During one of my stable times, I was invited to be an Advocate for the Arthritis Foundation in Washington, DC.   It was eye opening, as I realized how many suffer from this horrific, painful, deforming disease, but also gave me a dream and fight to carry on living every moment the best I could.

I am blessed with a loving, caring husband who has been “there” for me on this long road. His patience and understanding did not waver for 40 years as he has fought the battle with me. Being a caregiver for one who is ill is a challenging state of affairs.

It is very difficult, in your prime years, to have your lover become someone who cannot even be touched without feeling pain. What a blessing to have someone who cares, as it helps you stay sane. (Not politically correct term —but that is the truth.)

Recently I asked him how he ever had the patience to cope with me and my pain – as I graduated from crutches to wheelchairs, surgeries —many nights carrying my rigid, cramping body to a warm tub of water to get my muscles relaxed. He massaged, fed, cared for me as I lost the use of my right arm and my hand actually deformed as we watched.

He replied that he loved me and his hope and perseverance for a better day kept him going. Life happens and you deal with it!   What a guy!   He listened and encouraged me when he needed encouragement. He helped me to fight and be the best I could be.

He would not allow self pity or negative thinking and neither would I.

Yes, to have severe pain, is depressing and if you have any strength at all, even a trickle, you must fight. Yes, suicide crossed my mind, when I lost hope and the pain level was beyond the charts, but thank God for my doctor and my honey who kept the faith and told me to hold on —things would change—breathe—-breathe—breathe —and it would change. Hold on!

New drugs kept coming on the market with all their side effects —but you opt for relief and quality for that moment. I did not consider the long term effect.   I opted for instant relief. Now, 40 years later, I am dealing with the choices I made, but I look back and see I did what I had to do even though the pain is constant, some days not so bad. I maybe don’t have quantity, but I had a lot of quality. (Doing pretty good – holding at 77.)

Control your disease as much as possible. Give your own shots, if your doctor is receptive.   That is one less doctor appointment and your life becomes more your own.   Get opinions from others you trust.

Learn about your disease and become involved in the association that can help you.   Be aware of new treatments and hope. Rest and take care of yourself. Be resilient. Don’t be a martyr.   It is not fair to use your illness as an excuse—do not enjoy it.   Be proactive as much as possible. No “Why me God?” Make each moment the best you can. Take time to rest.

If you are a mom, or even if not, ask for what you need from your spouse or friends or support group for some relief. We need to help each other, if only a positive or caring phone call.

I realized I had to use all resources available to get well —meditation, music, and no negative people in my life.

I gave up listening to the daily news. If I had the energy to hold a book, I would read.

My doctor advised I sit in front of a mirror and gripe, whine, cry, yell…(not poised, but who knew???)…(I didn’t know about Gary’s theories then!)… tell my story to the mirror image of myself, over and over and over.

I also took crayons and scribbled my feelings on colored paper.     Watercolors dribbled drops and wavy lines as I tried to cope.

A sense of humor would bring sunshine for a few minutes and helps one through some embarrassing moments, especially when spilling or dropping. (Good thing: No one wants you to wash their china!)

I started writing my thoughts on the computer and produced a book! Journaling helps get the anger out.

I played the piano in wrong notes.

Sharing my thoughts with my friend, a good, willing listener, was worth a million.

I went to a hypnotist and alternate therapies.

I learned to ask for help and to get out of my bed and walk to the back yard.   Exercise as you can or have your caregiver move your limbs gently.

I would take 4-5 or more showers a day to relax my muscles.

If you can afford cleaning help, definitely hire it.

Eat well. Tune into your body and do not eat foods that seem to cause any reaction or inflammation.   Write down foods that work well for you. A bit of vanity helps also!

Wear clothing that is comfortable and easy, but fun and colorful!

Be positive! Rest a lot!!!! Proactive is the word.

Yes, there were times when I would hit a plateau or remission and I could nearly function as a normal person.. though, lacking small motor skills.   I felt better at those times and wanted to help myself and   do things for myself. I would feel like cooking or doing laundry and this was an adjustment for my care giving spouse —as his schedule of “caring” was off.   It is difficult for a caregiver to “let go” and let the patient “do.”   We had to have lots of communication over my needing to help myself when I could and his stepping back. Hurt feelings take energy as we had to work things through together.

When I could, I honored my commitment to volunteer at the hospital –to give of myself.   My love dropped me off and I could barely walk through the door, but it was one of the best things I did. I realized my issues were low on a scale of 1-10 as I looked around the lobby. If I could not get to the hospital, I tried to scribble a note to or phone another shut-in.   (Lesson: Reach out to help others as your energy allows.) Even if you are bed-ridden, you can phone someone else who is fighting a battle and put sunshine in their day. That positive vibe helps your inner soul in the healing process.

Having an illness is a 2 and 3 way responsibility. My doctor was instrumental in my understanding my hubby needed breaks, whether it be extra time at the office, attending a sporting event, playing golf, —anything to give him time and a way to refresh – away from me, stay fit himself and keep his energy.   I encouraged his getting away and he was always glad to get home, ready to tackle any needs I had. I am very thankful to have my husband in my life and his encouraging, loving spirit.

As your body goes to pot—use what you can.   My grandchild took me to “Show and Share” at kindergarten, to show off my crooked hand.   He told how it wasn’t much good with buttons, but it could still hug him!   Always keep your sense of humor – or develop it immediately!

Depression is the most common side effect and you must fight it at all costs and look out the window at the sky. Keep a plant in your view and if too hard to care for it, have a colorful artificial daisy in the window. Keep color in your life!

Dream and be thankful! Count your blessings – Laugh – Smile-You have water and you have life!

Above all —put on your lipstick or gloss-or have someone else put it on for you.

( Men- -a shave and a splash of lotion can perk up a cloudy day!)

You can do it, poised warrior!

 

(Thank you, Sarah Needles, for sharing your story on The Poised Life recently. It really struck heartfelt strings with me.)  Go, Sarah, Go!   Judy McCleary – June 7, 2014

 

 

 

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About Gary

Gary Stokes is mapping the universe of poise. His book, Poise: A Warrior's Guide, charts the path toward a fully-realized life, a vibrant integration of presence, connectedness, gratitude, creativity, and light-heartedness. Gary Stokes has been a coach to leaders of transformational change and President of Mountain Consulting. He designed and conducted research to test innovative strategies for reducing poverty in partnership with national foundations, federal and state government, and local communities. As founder and CEO of Move the Mountain Leadership Center, he coached hundreds of leaders, among them Presidential appointees and other top executives in government, education and business. He has written and spoken extensively about the profound personal and organizational challenges facing individual leaders of large-scale change. Mr. Stokes lives with his wife and collaborator, Mary Morris, in Prescott, Arizona.

9 Responses to Not the Original Plan by guest Judy McCleary

  1. eric June 10, 2014 at 4:03 am #

    Hi Judy,
    First thank you for sharing a very personal part of your life with strangers, I found it revealing of a strong and determined spirit, and I took inspiration and insight from your story.
    As a regular reader of the site and an occasional commenter and friend of Gary’s, I often have a chance to speak to the issue of fighting off our self-pity and victimhood as we search for way to get to a poised state of being.
    We are all capable of using our victim status to claim a higher seat at the table of our interpersonal relations, “Can’t you see I’m hurting, I’m sad, I’m lonely, etc…, which is why I deserve to get more love, more attention, even a pass on bad behavior. Don’t you feel sorry for me? ”
    Your story is the other side, one of understanding your condition, but not allowing yourself to give in and use the illness to get more love, attention and energy from others, but to spin your loving self out into the world and through giving, find joy for yourself.
    Thanks for your story, it makes the journey to a more aware and poised life seem like a attainable destination.

    Eric

  2. Judy June 10, 2014 at 6:35 pm #

    Thanks, Eric.
    I try very hard to “fit” in to the crowd and not look like I am having a not so perfect day. It takes energy, will power, pride and vanity. Some feel pride and vanity are not good traits, but you have to value yourself, care for self and in so doing, be an inspiration to those who care for you. My doctor calls me “resilient” and I love it!

    I have had a wonderful life and many do not know, nor will ever know my story -and that is good. They see me when I am up. I hide out when I need rest. I have actually learned to say, “No, I can’t do it.” Guess I sound like I am preaching, but I choose to be the best I can and it is all attitude. This too, will pass, and another moment will come. The anticipations are endless!

    To be blessed with my husband, children, extended family and many friends has been the most loving support system ever. I have great compassion for those who must fight their battles alone. I have tried to be that listening ear for many who have no one to care and in so doing, I have grown beyond measure.

    Today, my journey takes me to my canvas, where I am painting a picture by a sunny window. Who could ask for more?

    Thank you for your kind words.
    Judy

  3. Scott Jacobs June 10, 2014 at 6:58 pm #

    Thanks for your thoughtful description of the many years of your dealing with severe pain. As a care giver for my wife the last seven years, I can totally relate to every piece of personal information you have shared. The hardest part of dealing with chronic pain is the depression which completely consumes my wife’s mind on daily basis. Her panic attacks are also hard for her to control. It is difficult for her to rid her mind of the pessimism and negativity that surrounds her daily existence. She is trying to not feel self pity and is actually making a few positive steps forward in this endeavor. I myself do not feel like a victim nor do I feel self pity. Although in the early years of this care giver challenge I will admit to feeling some self pity. After reading Gary’s book and other articles on dealing with chronic pain, I have attempted to seek the better way of the warrior. Your comments have helped both me and my wife. Thank you for sharing.

  4. Judy June 11, 2014 at 3:28 am #

    Dear Scott,

    I appreciate your positive spirit and the way you and your wife are working together to conquer the elephant in the room. Depression is a demon and it takes everything you have to address it. Medication and pain level are almost insurmountable —but she can do it.

    It is like a pregnancy —it took 9 months —Why do we think we can instantly recover from anything in a short time when the gestation has been a long time of changes?

    Chronic pain is an absolute destroyer and it saps your very being. But, you have a choice.This is where attitude comes in. I truly believe that any positive thoughts or images will help in healing. Breathing and meditation helped me. Listening to quiet music relaxes and brings my mind to a safe place. Positive thoughts, vibes and people are vital in every waking moment.

    Yes, self pity is a very normal reaction to the circumstances your beloved faces daily. I did find the telling my story over and over to a mirror about 20+ times really helped eliminate the self pity story. It became quite boring and I moved on from that to more pleasant thoughts.

    I learned to control my own panic attacks through a silly, simple action. I have a bottle of water and whenever I feel panic and anxiety, I unscrew the bottle lid and drink some water. Suddenly, I am in control of something – so easy! It makes me laugh and I can move beyond that moment.

    I also believe in going to as many doctors as you can to see what help is available. I have been to 38 different doctors, from guru, magic, hypnotists, massage, ortho, surgeons, salves and ointments, pain control—-you name it, I’ve been there. When one is desperate, she/he will try anything to feel better. I ended up accepting my brilliant rheumotogist as my truth, my hypnotist and my massage therapist for relief. Everyone should try different options as per your diagnosis.

    Arthritis can be relieved with the new medications, surgery and other methods. Not cured – relieved.
    You can actually live a rather normal life knowing your limits.

    I have been on every thing offered for arthritis relief from over the counter, steroids, chemotherapy, gold, and self injectable biologicals and infusions. Yes, there are side effects, but you need help now. I live for the moment and in so doing have lived for years beyond.

    I realize back problems and other ills are another chapter, but you must keep searching for relief of the present situation. I do know the incredible pain of neck and rotator issues, but even in that there is a time where there is some reprieve.

    In some way, even a tiny way,encourage her to try to hold a pen or journal on a lap top computer. She must talk to her pages and reveal her inner thoughts, no matter what they are.

    Try scribbling with crayons on paper. The colors reveal her inner feelings and she needs to get them out!

    Do something! Feel a piece of velvet or silk. Keep a Teddy bear for cuddling and talking to. Wear a pretty, feminine, soft gown while resting. Eat a chocolate or savor ice cream on a stick. Take a bubble bath. Just do one little something that will bring back the touch of something lovely, soft and beautiful in her life. LIsten to gentle music and look at the moonlight. Read/write some poetry. Help her feel like a woman of value again.

    You are both worth it!!! Don’t ever forget the love that brought you together.
    Thanks again for your note.
    Judy m

    • Scott Jacobs June 11, 2014 at 11:39 pm #

      Thanks for all of your useful advise. My wife has recently started doing needle point projects. She cannot sit up for very long so she does the hobby semi laying down. She laughed when she read about your clay ball projects. I can relate to being a bird dog since we have spent countless hours researching her spinal fusion problems. She is sick to her stomach and feels like she could vomit several times during the day. Eating is not something that helps her as she will become ill shortly after eating. Almost every food makes her sick accept for peaches. Our love for each other has grown while dealing with her health problems. That is one of the positive things that has happened in dealing with her health challenge. We also communicate better and seem to enjoy each others company more than ever. Positive things can come out of hardships as you have readily demonstrated in your life. Thanks ever so much for attempting to help us.

  5. Judy June 11, 2014 at 1:15 pm #

    Dear Scott,
    Sometimes I feel like a Bird Dog tracking answers and solutions for positive living.

    I am reminded of a time when I volunteered at a support group for spinal injuries and stroke patients. One of the best art therapy projects I did that brought good feedback was giving each a stick of colored clay. It is usually sold in boxes of four and remains soft. The finished object will not harden and can be reused and reshaped.

    Most everyone could either hold or squeeze that stick. Many times they could form a ball and they were delighted. Others went on to form objects. They would hit it, talk to it—it was great therapy. For others, I had to soften the stick and partially form a ball for them.
    All in all, it was good exercise for our hands and spirits.

    All you need is a plastic cover for the patient, bed or table and a stick of clay, preferably red or yellow. Have some fun in your life!

    Judy mc

  6. Mary June 11, 2014 at 3:58 pm #

    Hi Judy– I just read your incredible post tonight while sipping wine and sitting on the front porch of our Arizona home– my body perfectly comfortable, mind calm. I wanted to try and absorb your story as much as one person can enter into another’s experience.

    Not easy. I have experienced intense physical pain as surely many humans have, but as I have no pain in the present moment, these memories are hard to conjure, recreate. Yet I was right there with you in your struggles– your writing transported me into a sense of what life has been for you all these years. I cannot feel it with you but can achieve a mindful understanding of your experience.

    What a life! Yours, the hard path of chronic pain, but no defeat in this story. No retreat from what-is.

    I believe all we truly have is the present moment– the here and now. Your response to Scott made wonderful sense to me when you advised people to, in the moment, touch velvet, eat a chocolate– do something that connects them to pleasure. Talking to yourself in the mirror until you victim story bored you. What a creative thing to do– with real results!

    I have such respect for how you have transformed a crippling and painful condition into a hero’s journey. And am humbled by your ability to teach and inspire us with your challenges and victories.

    Thanks for contributing to this dialogue in such a profound way. Mary

    • Judy June 11, 2014 at 10:20 pm #

      Dear Mary,
      I really appreciate your comments and it reminded me I am due for some wine myself. It is 5 p.m. somewhere!

      Your words were a booster juice injection!

      I have to admit, but don’t tell anyone, especially Gary, today was a 2 episode, heart rhythm low gear day, even with sunshine and all my positive spirit.

      When you get whamped (I made that word up), it is a struggle to move, but you do what you can to stay upright. I did go late to my art class and spent my day producing nothing but to be around others’ chatter and creativity. So, sometimes I am a human and get off my carousel of rainbows and happiness. Rest was needed today. I make no apologies and maintained a teeny bit of poise.

      Your comments were the right RX to give that bit of extra get up and go. Friends are so important in our continued quest for healing. Thank you for uplifing words. Now, where did Clark put my wine?
      judy

  7. Gary June 12, 2014 at 3:18 pm #

    Judy, Your post and subsequent comments are beautiful descriptions of a life without complaint.

    I have dedicated The Poised Life blog to mapping a state of consciousness that allows us to live a vibrant life of joy and practical advantage.

    You exemplify that state of consciousness. Faced with severe physical pain as a constant challenge, you have learned how to overcome self-pity and victimhood to live the poised life.

    You live in the present, finding things to appreciate everywhere you look.

    You are connected—in loving relationship with other people, with this beautiful earth, and with your own mission in life.

    You are grateful, overcoming the pain to see and acknowledge the many gifts of your life.

    You are a creative dynamo. Ideas about how to engage with life flow out of you in a steady stream. You see opportunity everywhere you look.

    Your heart is so light that I fear you might leave the ground and fly off to heavens unknown.

    I believe that you live in a poised consciousness. We know that because your love is flowing every time you speak.

    I thank you for your gifts of wisdom to us all. Gary

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