brace on right leg, use scooter because of frequent falls
List any Polio Survivor Groups that you belong to online or in person.
Please describe how polio has changed your life.
I also have a genetically transmitted degenerative disorder called Ehlers Danlos Syndrome. It has been difficult to separate the symptoms from PPS from those of EDS. I live in a "Nursing Home" and have for the past 3 years- moved here when I was 59. I have had many surgeries 10+_ mainly to either fuse or replace joints that have detertiorated to the point that the pain was intolerable. I have considerable chronic pain in joints and nearly chronic muscle spasms in my legs. I fall frequently and use a scooter as a result. I have a fulltime companion to help me with my daily activities and a nurse to set up and supervise the 20+ medications I have to take.
My husband of 27 years threw me out of the house and changed the locks, "Nobody here wants to have you living here anymore". He felt that my physical complaints were not real; only designed to get attention. I lived in my car for a few days before moving into a hospital waiting room for the nights. Finally was able to get a cheap apartment in a part of town predominantly occupied by prostitutes. When my 2 children came to town from college during a Holiday vacation, they were horrified to find me where I was living and negotiated with their Father for me to move into a nice apartment with him paying the rent. This went on until I found he was having an affair with another women. I then filed for divorce at which time he began meeting with my 3 sisters telling them I had been abusive and neglective of the children (all lies- I was a very active and involved Mother) at which point they agreed to testify against me should the divorce go to trial. Altho they now, 3 years later admit they were misled, I still have no real relationship with them.
Our 2 children are still very protective of me. However, my daughter married about 2 years ago and classically, she married her "Father". He does not like me and I have never been fond of him. He treats me like my ex-husband treated me and my daughter seems to be turning more and more against me in support of her husband. Things she and I had talk for many years about doing topgether, e.g. she had always wanted me to be with her when she had her babies. Lately she has told me that perhaps that plan is not such a good one and I will not be invited to be a part of those experiences . My ex-husband has remarried. My children say she is very much like me and they feel I would like her. So life with their Dad now also includes a new Mom and I am no longer included in many of their visits to town. It is just less complicated to spend their time and stay with their Father and new Mother.
My children have expressed feelings of helplessness in the face of my deterioration. They know their is nothing they can do to change the course of the 2 deteriorative disorders I have and I feel them pulling away.
Although I try to stay as active as I can, I do feel very alone much of the time.I feel that my disorders are increasingly becoming beyond any control I have over them and the end may be near.
How did you find out about PolioToday.org?
I had talked with a therapist about trying to find some kind of support group for people with PPS and she suggested I try this dire3ction.
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welcome to polio today, you'll find many supportive friends here. I think Linda has explained that you are not alone with your husband leaving you because of disability. My husband has been dead many years but he would not have stuck with me either with PPS -- I did know him well! When I told my close friends that I had cancer, I saw none of them again. Apparently this is very common behaviour, and very hard to handle at the time. What helped me most was finding out that it was common behaviour to desert someone who needed support.
Sandra, My ex-husband (of 10 years) started out being very supportive when I was first diagnosed with PPS. He even said, "You aren't going through this alone, We are going through this together."......as my PPS progressed and I became more and more disabled, his attitude changed...but he didn't tell me at first. He waited until my father had died and I had come back" home" (to California) after spending a month with my Mother in SC. He told me that he had decided that he "didn't want to be married to a handicapped person anymore."
My father-in-law stuck beside me and ended up being my best support person. He was the one with me when I was given the news that I would be in a wheelchair the rest of my life.
Fast forward...my in-laws had put me on a plane to come back to SC and live with my Mother. They put my furniture on a Mayflower and drove my car, and my dog across country. A couple of years later, I was at a church sponsored Singles Group when I met my present husband. The first time he saw me I was in a wheelchair. My PPS has gotten worse, but at no time has my husband expressed disgust or disbelief towards me.....
THE POINT of this "Shaggy Dog" story is....I have BEEN there! Do not loose heart...and IF you can POSSIBLY do it, try to find it in yourself to forgive) ...it is such a heavy burden lifted from your shoulders...only then can you fully go towards your future with hope and confidence!
I am going to address this subject in my new Blog...but first I have to get the "nuts and bolts" posts about wheelchairs, vans, etc. done. Some of my PPS friends have suggested subjects for future posts....If you want me to send you a link to my Blog, I'll need your e-mail address. I don't think I can post a link here. I have other friends who have also had their husband and family or friends dessert them after they became disabled...and it is not just the men who do this by any means! YOU ARE NOT ALONE!