Jun 19 2012

Annie’s page

admin @ 9:15 pm

                     Comments welcomed at the bottom of the page!

                                                         Coping

                                                                            by Annie

 

Coping:  What in the world does that mean, anyway??

What is coping?  For us with PPS, coping is finding ways to deal with the challenges that we face because of our disability.  It is finding ways to focus on what we can do instead of what we can’t.

What a novel idea!  It seems totally natural, yet something that each of us must learn, if we didn’t learn it as children when we had the original polio. And even if we did, that’s no guarantee that we’ll remember how to use them right away.

I mentioned in a previous article; “Grieving; the aftermath of Polio and Post-Polio, that I had done (that I remember)  little grieving after the original illness.  But I was a “passer”.  Other than a sagging and small right arm and shoulder, I could do most things others could do.  I didn’t spend almost a year in an iron lung, as did my dearest friend Gail.  She had surgery upon surgery, spending much of her life in hospitals, and lost the ability to go to school all of her senior year after having surgery once again and spending it in the hospital. She’d managed to keep up, and to graduate, but told me recently that when she went to her class reunion, some of her classmates looked at her as if she were a ghost, because they thought she had died.  She still giggles, quoting the great Author Mark Twain, and says that “The reports of my demise have been greatly exaggerated”.  After all she has been through, she has retained a sense of humor that is utterly delightful.   She’s truly an amazing gal.

There may be those of us, like Gail, who managed to develop those coping skills very young in life.  Does that mean that it is easier for us when we begin having post polio?  Not necessarily.  Many of us, when the post polio hits; find ourselves grieving and devastated when we are forced to go back into wheelchairs, back into braces, or back into using full time vents or BiPaps.  We may find that even the best of coping skills don’t provide instant relief for the grief we experience during the acute phase of grieving.  They will, however eventually help.

I did not have the depth of the coping skills that Gail learned early, in the aftermath of the original polio.  Most of mine had to be learned later,  as an adult, suddenly lying in bed and unable to do much besides, well, just lie there.  It’s taken me a while, but I’m finally beginning to “catch up.”

What exactly are some of these “coping skills”?  These are a few.

  • Learning to be an active participant in our own care.  This was a hard one for me.   We who spent our lives under the care of Dr’s, respected and admired them.  And depended on them.  So the idea of being a participant in our own medical decisions and our own car was a foreign thing to us.  We did our therapy, but didn’t question anything we were told to do.  It’s been a challenge for me, but over the years I’ve learned to ask questions like; “Why?”  “How will this help?”  And “How much will this cost?  And if it turns out to be really expensive:  “Is there something I can do that is tried and true but costs less?”  I’m blessed that I have an Internal Medicine Physician  who appreciates me asking, and is very willing to work with me.

  • Another thing we can do:, this, too was a hard one,  especially in 2004 when Post Polio struck with a vengeance.  It  is:  “We are not victims here.  We don’t have to just sit back and take whatever happens to us.  We can fight it!  (I have this mental vision of delivering a lethal Karate chop to a dragon with “ Post polio” written across it’s back, but of course, can’t do that!)  What I can do is change my focus.

We are ultimately the ones who have control over our lives, and our attitudes.  Our illnesses can do that only if we allow it. Yes, there are things about our disabilities that do put limits on us.  But allowing limits and allowing control are two different things.  Figuring out the difference can sometimes be a trick.

Allowing LIMITS  is necessary; we know we have those. It’s how we think of them that’s important.  Instead of thinking of them as limits, think of them as paths, or as forms of enabling. Yep, the wheelchair that we may have considered a limit yesterday becomes the path to allowing us to visit all our favorite places.

Allowing CONTROL is to give up and say, “I can’t do anything I love anymore.  I want to run, I want to go to the gym,  but I can’t.  Since I can’t do what I love, I won’t do anything.  This hands over our lives to the illness.  If we do this, we’ve succumbed.  We’ve given up.

Okay, so how do we allow limits without allowing control?  Every time we end up with the “victim mentality” pressing inward,  we can make a mental list—or a physical one, for that matter.

We can:

Focus on the things we can do—not just to stay busy, but to feel like we can make a difference.

These are a few of the  things we can do when we have very little energy:

Research online  (the recliner is a friendly partner in doing this!)

Join support groups online  (you may need to spend a little time weeding out the ones that are the “doom and gloom” ones, as I did.)

Keep an eye out for others who need encouragement; and if we need it, ask

Write about things that interest us

Read our favorite kinds of books

Keep up with friends on e-mail

Listen to music

Watch our favorite kinds of shows and/or movies; ( mine are murder mysteries)

Things that require a little more energy on days when we have more:

Go to visit sick friends and relatives

Join a support group that meets in person once a month

Join a book study group

Meet friends for lunch

Volunteer, making sure that the outfit we volunteer for understands our limitations and doesn’t expect more than we can do.  Also, make sure we don’t volunteer for more than we can do.  Volunteering is a wonderful way to feel as if we’re making a difference in someone elses’s life and to “think outside our own selves.”

Take up Hobbies that may or may not require much energy.  This depends on whether you are male or female, and how much you feel you you can do—And what your disabilities are.   The list of available hobbies is endless; but here are some I like to do that don’t require lots of energy.  Make things that you can give as gifts for holidays or birthdays kills two birds with one stone!

Making jewelry

Beading

Doing needlepoint or cross-stitch ( Some friends do plastic canvas as a hobby)

Make projects with woodworking (this requires more energy)  A friend has a lathe and spends carefully allotted time on good days in his workshop, keeping track of the time to enable rest.

And of course, there is always the need to try to keep up with the housework, laundry, and cooking.  I know that is important; however, so many of us have so little energy that we must write into our schedule the things that we enjoy.   If housekeeping is something that brings you joy, by all means, do that as your hobby.  If you don’t enjoy it and it’s a chore to you?  Compromising is important.  If you spend all of your energy on doing something you don’t particularly like to do, and don’t do things that bring you joy, life is a dreary existence.  It might help to make a schedule and try to do some of both each day?

Soooo…on to the next.

  1. Another way to cope?

Whatever we choose to do, appreciate the things we accomplish for what they are.   They are valuable!   This may be hard, but it’s important for us to appreciate our own work.

Don’t fall into the trap of saying, ‘Well, I know it’s not as good as it should be; if I were not disabled, it would be so much better.”   For one thing—it’s very doubtful this is true!  Most PPS’ers are such type A’s that we insist on doing things as perfectly as possible.  Don’t be afraid to be proud of yourself and what you do!  But that being so, it may be necessary to allow more time to do our projects.

There  are other ways to cope; and I know I’ve probably missed some really good ones!  Each one of us is an original creation; each of us may have different ways of coping; whatever they are, it’s important that they are uplifting.  At the end of a day, I feel so much better about myself if I have accomplished even something very small, that was done for other people!

Put your imagination to work! These are just my ideas, and your mileage may vary. 🙂

Annie

 

 


                                        

                                  

    

 

 

 


 

 

 

 

 



 

33 Responses to “Annie’s page”

  1. admin says:

    Annie I enjoy your page.

  2. admin says:

    Annie what a wonderful article about our supporter’s. Fred helped me so much and as you said trying to keep me from doing to much. My kids are such good supporter’s too and I really appreciate them.

  3. Jan Purk says:

    Annie, Sunday, June 17, 2012

    It would be difficult for me to write about a few fun experiences while at the reunion last week. The whole experience was great. I enjoyed meeting all 4 new members that attended, plus some who were not new but weren’t there last year, my first time attending the reunion. Seeing all the people I had met last year was great, too. I’ve never had a family reunion where I felt like I did when I was there. After 62 years, I’ve finally found my real family. I always did tell my mom I was adopted. lol

    I can’t remember the last time I laughed so hard that tears were running….but I sure did last week. We enjoyed sitting outside late at night and talking with some of the other night owls. We took advantage of the pool and hot tub. Wish I had both at home. lol, we did not leave the motel grounds from Thurs. afternoon until Sun. morning when we left and didn’t mind one bit.

    Hugs,

    Jan

  4. Mike says:

    I enjoyed the article. It really is tougher for the spouse. I had non-paralytic polio. I was athletic, operated summer camps for children in the summer, and I worked, and am still working. When PPS got to me about 20 years ago, it put me into an AFO. I could still function quite well. But in 3 years that AFO became a full leg brace, and slowed me down. In NY there is no support group for spouses of polio survivors. We’re married 44 years. For 27 years she couldn’t slow me down, and then things changed. It was really difficult for her to deal with it in the beginning. It took several years for her to deal with me in a full leg brace, and then accept it. I now have an AFO on the “good leg,” which I know in time will become a full leg brace. I don’t bring my wife to the support groups or conferences where I speak, because I don’t want her to see the many survivors who are much worse than I am, and listen to the stories. I’m dealing with this fine. I wanted to write a book: “From Tennis Court to Legbraces.” One thing PPS has tasught me: “You cant get upset over something you have no control over.” Live with it, or be miserable. Life is great. Mike

    • Annie says:

      Thanks, Mike!

      I do hope that she is able to make peace with this, for her sake and for yours. I encourage you to go ahead and write the book; I’m sure it will be fantastic! And you are quite right; We as survivors have spent our lives leaning to “Live with it”. And yes, life IS great!

  5. Janet Williams says:

    Annie- I love what you wrote. It was hard for my Husband to understand what was happening to his ‘wife’- I was his care giver but looking back- he was my caregiver, also. Strange.. As sick as Vern was he would still try and vaccuum always asking me, what he could do for me. He did not like the treatment I got from some of the doctors around here, when I was not quite sure what was really going on. So when he got his 100% VA- he sent me to The Post Polio Institute- and he tried so hard over the next few years to understand- he would tell me to stop- lay down, rest – take day by day. He read a few things about PPS- and was so worried about me. He made sure I got my PC(power chair) and would tell me to use it more as I was having a war with the chair. Vern kept me mentally going as I had a break down in ’05 physically and mentally. He kept me going though and together we would try and make ‘humor’ out of both of us being disabled.

    Once my regular doctor asked me, what are you going to do when Vern’s needs get to be more and more- My answer- I will do what I have to do and hire people- No way would I have stopped caring for him. It was great he had the VA or should I say we had the VA to help. Together we all could work it together. He used to watch me and really could see my physical strength failing. He had alot of work down on our home- this is where I need to be right now- he made it so much more handicap accessible for both of us. I miss him so- his humor alone could take my depression and make light out of matters. I best stop before I write a book- but just wanted to express, how my husband care and tried to understand better than anyoody in my family.
    Hugs – Great Page.

    • Annie says:

      Janet,
      Thanks for your kind words.
      You were so very blessed to have Vern; even in his illness he did his utmost to look out for your needs, just as you did his. Very blessed indeed..

  6. Grady Equality Duke says:

    Thanks for your comments on fatigue. I have a partner for over 30 yrs. I don’t think he understands fatigue & I have explained it to him more than a few times. However, he has never thought of me as lazy. Like you, I never thought of myself as disabled while growing up & did everything my peers did, only slower due to my weak leg. Then Postpolio hit me in my fifties: now I have my good leg amputated and left me with the weakest one. I am now at 62 yrs. old in a wheelchair. A new thing for me to adjust to. I will adjust & I have accepted the wheelchair as part of me; as I did the cane, and braces earlier in my life. Post Polio never stops. We have to continually adjust & accept ourselves as we are changing throughout our life. I hope you continue to write & keep this page up. It is very encouraging to us all that suffer daily from Post Polio.

    • Annie says:

      Thanks so much, Grady, for commenting,
      Your determination to adjust, despite all you have been through, says so much about you as a Survivor!

  7. admin says:

    Annie I really enjoyed reading about when you had polio. You are a great writer……….it really kept my interest. Great article.

  8. Linda Donaldson says:

    Annie,

    Thank you for sharing your remembrances of polio. I remember the toast in the morning, with real butter on it! And I remember the cloverleaf steel tubs. They put a white cotton covering on our bottoms, nothing on top. It looked and felt like a diaper and I was 6! But I’ve alwyays loved being in the water so I looked forward to these trips to PT. I once lost my bottom cover while in that tub with two other children; I was so embarrassed! You mentioned being the only child in your neighborhood with polio; I was the first, and I’m still looking for the little newspaper clipping that Mom saved. The hospital was full of us. I was in isolation in a crib, I’m guessing due to the shortage of beds. I can still remember the glass with what seemed like wire on the inside. My Mom brought me a little kit with play lipstick which I dropped on the floor. I climbed out of that crib to get it and the nurse threatened me, saying that if I got out of bed again, she would cover the top of the bed so I couldn’t get out. Needless to say, I stayed in the bed after that. Oh, I got into trouble one more time. When I was transferred to the ward, there was a window at the top of my bed. I stood up to open the blind one morning and was told that if I did that again I woud be put in the doghouse. I could go on, but I’ll save it for another time. Thank you again, Annie!

    Linda in Ohio

    • Annie says:

      Thank you, Linda,

      As I look back, I know I was not the only child with polio; I have often wondered if the Editor of the paper gave specific instructions to the ones writing the article to say that to try to calm the hysteria of the epidemic that year.

      And yes, we had to wear the little diaper-like cotton pants too. I had forgotten that!

      Thank you for sharing your experiences!

  9. Janet says:

    Annie – I really loved reading about you growing up with Polio- It sounds like you had a very loving family. This means so much to young children. Now, I know where you got your strength from. Thanks for posting that and I look forward to reading more. I really give all of you that work so hard on this site, so much credit. Knowing how PPS can affect one and all. Keep writing and I will keep reading..LOL
    Hugs Janet

  10. Linda in Branson says:

    Annie,

    Great job. Enjoyed reading your experiences. Hoping the bad memories will stay hidden.

  11. Wilma says:

    Annie thanks sharing your trip with us. I caught myself right there with you seeing it all……….and it was beautiful. Wilma

  12. Pat Grimes says:

    Annie, You are so very lucky that you were not hurt. Truly you were being watched over by God and his angels. Remember — CELL PHONE!!!!!!!!!!!!

  13. Annie says:

    I was, truly. Someone told me recently that when I get to heaven, my guardian angels are going to beat me up. But I am better about taking my cell phone with me now!

  14. Wilma says:

    Annie, thanks so much for this article. It is us to a “T”. I could see myself all the way through and when I got to the end I knew there was still hope for me to enjoy life. BransonGoers are a big part of that and I love you all. Wilma

  15. Annie says:

    Thanks, Wilma, The Bransongoers are absolutely a fantastic group. I don’t know what I’d do without them!

  16. Millie says:

    Great job, Annie. I especially enjoyed the article explaining what happened to us at the onset of polio and the consequences of all that later. You are such a good writer!

  17. admin says:

    Annie I am still laughing…………you are such a good writer, it really keeps your attention. Thanks for sharing this.

  18. Millie Lill says:

    Thanks for this, Annie. Hilarious! Just proves what I’ve always said: Little boys never really grow up, they just get bigger and harder to control.

  19. Wilma says:

    Annie I really enjoyed reading this post, you have a remarkable way of writing and it’s so easy to read………I was wanting more when it was finished.

  20. sharon szegedy says:

    I just discovered your website, I have had pps for around 15 years,had polio in 1946 at age 4. I was paralyzed from these waist down. I slowly came out of the paralysis and was left with weakness on my left side. My left leg and hip are small, during the 50’s I had three surgeries to stabilize both feet and a muscle transplant that didn’t work. Like many of you, I could write a book of the many memories some good, some sad. I have found all of your stories so very interesting and informative. Wish I could meet you all in Branson.

    • admin says:

      Sharon good to hear from you. My name is Wilma and We would love to see you in Branson too. Where are you from? I had polio when I was 2 years old and PPS doesn’t showing up around 1999. I am in a power chair full time now. We have a Branson web address if you would like to join our group. The address is http://www.PostPolioBransonGoers@yahoogroups.com There is a form to fill out to join.

    • Annie says:

      Oh, Sharon, we wish you could come to Branson too! Is it possible? Please write and let us know? There are so many stories to share among us all. Being a part of our group is a very ‘special place to be!’ I encourage you to join the PPBG group that Wilma has linked on the home page!
      As far as writing your stories goes? You should! Since many of the professional groups think of us as “dinosaurs”, our stories are rapidly diminishing. We need to be writing them down for our families’ benefit, if nothing else!

  21. Bill and Audrey Curnutt says:

    Greetings:

    Audrey and I just attended the PPS Branson reunion and felt so welcomed and loved by all whom attended. We can never tell you how welcomed you made us feel. To those who did not attend sure missed a blessing and lost out on some great information. There was some great food too. Don’t forget next year!!!

    If I start naming names, I know I would miss some ones so I won’t go there. You each one shared a very important part of you lives with us. I feel for sure I am not along in this PPS fight. You gave me insights that I had never had before. We each have a story to tell don’t we? We are looking forward to next year and wish it were next week.

    Thankfully we are still able to travel so last year we brought another small motorhome to do short trips in and camp in as we enjoy that so much. After being fulltimers for 10 years, we had to sell our big rig and brought a duplex in Marshfield MO so I could recoup and heal. That lasted less than two years then we moved into our current home in Springfield MO which is a 55 plus condo place by Cox hospital. Everything is so handy at this location. It is also handicap excessible.

    I was able to get an appointment with Dr. Kargus in Joplin for this coming Thursday. I am looking forward to that appointment with a man whom knows about PPS. I cancelled my appointment with my other doctor in St. Louis. I was not looking forward to that drive this time. Joplin is only about 1 1/2 hours away from us.

    I am trying to learn the “ins and outs” of all the PPS sights you all have so you will have to bare with me for a while please. Annie, thanks for your help in this as I need all the help I can get. Thank you

    Bill R. Curnutt

  22. Annie says:

    Thanks so much, Bill! I cannot express how much we all enjoyed meeting you and Audrey! We learned much from you, as well!

  23. shirley ledford says:

    Thanks for all the interesting stories. I was surprised to read that one member caught polio in 1946 when she was 4 years old. I caught in September 1946 at age 4. My sister came down with it about ten days later and died in April 13, 2001 after PPS and heart trouble took her. We spent about 2.5 years in Children’s Mercy Hospital, K.C., Mo. as we both came down with rheumatic fever at ages 6 and 8. Between the polio and rheumatic fever the hospital seemed like home to us for a time. My husband and I are both planning on attending this year and it sounds like a wonderful group with lots of stories and experiences I can relate to. Thanks Annie for your story, I enjoyed it and sympathized with so many of your experiences. To Bill in Springfield I think you will like Dr. Kargis, he is a wonderful human being and has ordered me a PC and is doing all he can to help me deal with PPS.
    Shirley

  24. Annie says:

    Thank you, Shirley,
    I too, was four when Polio struck. I’m so sorry to hear about you losing your sister.
    Yes, the PPBG group IS a wonderful group. We are very excited about the upcoming reunion, and about meeting you!
    ~Annie

Leave a Reply

*