I 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.