To 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