Hey There sssnov76, My Name is Dennis, I am a 1976 hydrocephalus shunt patient, It was known I had Chiari at the time the Shunt was installed. My doctor did not want to do the decompression surgery unless there was no option. It tuned out that the option of the shunt worked well for a few years until it was getting difficult to hide my returned difficulty coping with balance, gait, double vision, headaches etc… My Father and Brother pulled me into the kitchen one day and told me that basically they knew I was hiding that things were getting miserable again. So I am also a 1980 Decompression patient. So anyway from there I was off to the surgeon for the decompression surgery. If I didn’t have the surgery I was told I was heading for life in a wheelchair. I was told before the Surgery that I would require months of Physical Therapy to learn how to walk right again. I was an extreme case. Against Doctors orders I was released to do the therapy in my home town after my parents promised Him that I would not be left alone until the therapy was proved to be working. Fast forward a few years, after Therapy, Schooling paid by the government because of my surgeries and the severity, I ended up graduating and ultimately decided to work in a factory, a clean room laboratory type position so it worked well. Ended up working my way to supervision and a few years ago Project manager… But now I will be totally honest, I am Exhausted, I am fatigued, I am anxious all the time. i have severe headaches, sometimes Vertigo, my new family Doctor calls it that anyway. The room spins so bad when he is examining my abdomen where the shunt tube travels. I have to sit on the table for 10 to 15 minutes before I can walk without staggering.
So, Yeah, I get it, but I will say you can be strong and fight through it or let it take control. Believe me you don’t have to like it, I know I don’t!!
I was told by my father that I better hope no one ever finds out or I will never have a normal life. I don’t know if that was for my sake or his actually. But I buried it and no one ever found out anything til my Pastor approached me one day and said "I have watched you and I can see that you struggle connecting, you are friendly and happy but out side of a hand shake you won’t let anyone in. So with his help, I am dropping the secret. It is not easy, I have only been able to tell the truth to a handful at Church.
And I get it too when people talk about certain things that they deal with daily. I don’t want to diminish anything, but they have no idea how hard life can be. Even my own family, they think that the surgery was a magic wand and I am all better. Did I mention I am exhausted. But i think that a lot of people are starting to see that without being told anything now.
After secretly living my life as though I was perfect as any other guy, I am paying for many accidents, falling and such. After the last fall a few years ago it was discovered that the shunt is destroyed from the fall. So now I have lost the back up of the shunt to help with the drainage. So finally ended up with a recommended wait and see because shunt repair/replacement is risky. So therapy again for several months, which helped while it was being done, but it is falling off since it is over.
So now I am diagnosed with possible Narcolepsy, I think it is just that I am permanently and completely exhausted. But if the meds for that condition will help I am all for it.
So absolutely, I get it. If you are experiencing the things I have lived with in secret for 40+ years. I totally see how you are exhausted and fatigued. But don’t be stupid like me and deny anything is wrong in such a way that you ignore your limits. They are nothing to be ashamed of and abiding by them can save you a lot of added exhaustion. Live your life the best you can, accept that you are always going to have these difficulties, everyone is always going to think that their issues are the worst. And you are always going to feel like yours are, but there are people who have it worse than us.
Believe me when I say, I know exactly what you are saying, but don’t get so prideful or bitter that you push people away. That is what I did and ended up making a great life for myself…completely on my own.
Sorry this got so long, I guess it is kind of proof that I am just learning how to talk about it all.
I actually feel like my story is one of the positive stories. Proof that you can do whatever you want and put up with whatever you have to in order to make the life you want. But I am 56 now and I am exhausted.