RSS

Tag Archives: Post-polio syndrome

Finally facing the truth about Post-Polio Syndrome, abandonment issues and possible child molestation.

Feeling of AbandonmentI have been involved with two really great Post-Polio Support Groups on Facebook. It appears the more I post the more help I can give and get. Yesterday was a very low point with my psychological issues of social anxiety and depression. Yes I am on medication but at times it doesn’t help because meds only provide a kind of band aide effect on many mental health problems.

Today I posted on one group (some editing) the following: Fair warning, this is a long post so for those of you (admit it, there are some of you… hey it is okay, I am the same sometimes…lol) who hate them and find me a little boring, then you may not want to read any further :

Often times, too often, I will have days when my depression and anxiety is off the charts. It was bad when I was working, trying to deal with: Post-polio syndrome and having to defend myself to doctors who knew nothing about polio. One of the worse was a Doctor actually screaming at me, “There is no such thing as Post-Polio Syndrome. YOU DON’T HAVE POLIO. It’s all in your head. Keep seeing your psychiatrist!” Why should todays physicians care about post-polio survivors? As far as they are concerned it is over, why waste time with an obsolete disease?

As symptoms began to increase, I began to see one doctor after another. Often I felt like a complainer, a whiner because of the muscle twitches, spasms, constant falls, upper and lower back pain but worse was the mental and psychological issues (yes most of those psyc issues I buried deep) surfacing because of trying to work through so many obstacles that arose daily. At home I slept constantly after work, I just couldn’t seem to get enough rest physically and mentally.

Finally something snapped, it was like an overloaded circuit shorting out. I tried to talk to co-workers, doctors (even psychiatrists), family and friends but all would often say, maybe not in the exact words, “Deal with it, it’s all in your head, you have a lot to be thankful for, keep working because what would you do with yourself. Retiring would be the worst thing you could do!” So I pushed my body, mind and psyc to the limit. I felt guilt that turned into clinical depression and severe social anxiety,  constantly feeling that tight feeling in my gut that just wouldn’t go away and at times would turn to panic.

Finally I came across Dr. Richard Bruno on the internet who is one of the top researchers (likely the only one left) of post-polio survivors. He understood EVERYTHING I was going through. He gave me a better understanding of myself. Everything my medical doctors, psychiatrists, friends and co-workers said didn’t matter anymore. I wasn’t being a whiner after all. What was happening to me (numerous symptoms, it is why it is called a “syndrome”) wasn’t all just in my head. Yesterday I was going through one of the worst anxiety attacks and depressions I have been through in a good while. Thanks to two post-polio support groups on the internet they came to my rescue. Virtually all stated they had the same problem with a feeling of an abandonment disorder. Possibly coming from our childhood of having to spend months in hospitals with our families miles and miles away. Can you imagine as a child being forced to be away from family?

I suppose I shouldn’t say this on the internet but it is part of who I am. I just told this to a friend last week but it seem to do me no good to talk about it. That day I had an unexpected flashback of when I was 12 and was going to have surgery on one of my feet. To this day I am scared to death of hospitals (most all medical facilities). While being prepped for surgery by an intern, I can now remember that what was done during that pre-surgery prep was child molestation but I was too young to know that, I only knew I felt really awful afterwards, couldn’t say anything to anyone and put it in a little corner of my brain all these years.

I have few friends because I have often pushed them away or been way too clingy. I love helping people but often that can go against me. I have one friend who has said more than once, “I can’t take much more of you.” and another say, “It is all up here.” pointing to their head.

Advertisements
 
2 Comments

Posted by on January 20, 2015 in Anxiety, Mental, molestation, Polio

 

Tags: , , , , , , ,

Finally……An Update!

Bubba At Four

This was in the early part of 1960 just a few months after coming home from treatment at the Warm Springs Foundation Hospital. I had just turned four years old.

I would have to go back and review my previous posts on this blog to know for sure when my last one was published but I believe is was just about one year ago this month. I have no excuse other than having too much on my plate and forgetting to return to update. I personally hate it when I go to websites and blogs that aren’t maintained on a regular basis. I honestly believe it not to be the fault of the owners, often circumstances beyond their control can come up.

I won’t go into too much detail right now (to be continued…lol) but will say this past year has been a challenge with it’s ups and downs, but then again, that is life.  I will say this, my faith, my Christianity, patience, psychological, mental and physical health have all been tested to the limit but I have held strong.

A certain individual has recently offered to help me improve and collaborate with my website, “Polio Survivors of the 21st Century” in the new year 2015. This site is very important to me as it is a non-profit site I have dedicated to all polio survivors in hopes I can provide constant up to date resources. Once a vaccine for polio was discovered, polio victims/survivors were forgotten, literally. Physicians, healthcare professionals, health insurance companies, healthcare organizations, hospitals and the public no longer had knowledge of the care Post-Polio Survivors needed.

Many of us gave our all to dedicate our lives to others. The majority of us had/have a Type A personality where nothing and no one could slow us down! Unfortunately it caught up with us. The polio virus affected neurons in the spinal cord (right on down from the brain stem). It killed off selected ones, left some and damaged others. The polio survivor learned to compensate, allowing the damaged neurons to take over the extra burden of those killed off. In later years, those damaged neurons became over used along with the aging process and new battle began. “Post-Polio Syndrome” became another battle for the polio survivor to deal with.

I was once heavily involved in tobacco abuse but through the years found it was saturated with many, many websites and support groups and often times these groups and websites refused to collaborate with one another but to compete. For me I began to get frustrated that I wasn’t really helping anyone and there were plenty of others happy to step in and fill the void I might have left.

I come to realize, after getting to know Dr. Richard Bruno (the world’s top most expert in PPS), observing outdated websites and reading posts in only a handful of existing FB Support Groups, maybe my help could be worthwhile. Now I would like to concentrate my efforts on all I can to let other polio survivors know they are not alone. We are one community and we need to stand together, help one another an forget petty disagreements. Non-profit Organizations need to be scrutinized carefully, very carefully when they claim they are helping Polio Survivors. Donations to any organization should be carefully thought out and researched.

Even at my age, I am still learning, I make mistakes, lots of mistakes but I will NEVER allow family, friends and my beliefs along with polio survivors to be abused or misled in anyway if I can possibly help it.

Okay, I have kept those reading this for way too long. I do tend to ramble but will try to keep this blog going and announce any updates to my (almost like a child to me) website, “Polio Survivors of the 21st Century“.

One last thing, I have bad grammar, my spelling is not always good even with spell check, I often put my foot in my mouth with some of my writing and worse……I have a sarcastic dry sense of humor. Just wanted to warn y’all.

Respectfully,

Bubba (James)

“To Thine Own Self Be True”

 
Leave a comment

Posted by on December 20, 2014 in Uncategorized

 

Tags: , , , , , ,