Post-surgical silence syndrome

Yes, I made that syndrome in the title up.....but if it was a real one, I think I could have it. This is something that I have been mulling over lately and, although I would have posted much earlier about it in the past to actually process these thoughts, have become quite convinced  that it is real.
In my previous post, Supporters Unite, I provided a reason, albeit brief, as to my blog-silence, as being a result of the guilt I feel at constantly  complaining. I was feeling guilty for really bringing the lives of those around me to a virtual halt due to my health needs. While I still feel that, some days more than others, I seem to have done what quite a few of my fellow TN warriors online seem to do after surgery. I have developed  Post-surgical silence syndrome (PSSS).
From what I can deduce, looking at posts by others and talking with them in support groups, talking with my surgeon, and quite often talking to myself, MVD surgery (endoscopic skull Base in my case) has many unexpected and seemingly benign results. The first one I experienced is fatigue like you would not believe possible, a tiredness that actually makes you feel like you're physically  walking at the bottom of a pool ALL the time, like everything is in slow motion and no matter how hard you try, you just can't come up for air. After 3 months, I still feel that fatigue all the time, and it's driving me crazy. My surgeon assured  me that part of the reason for this was the psychological toll that major surgery takes on you, especially when you have been warned of the fatal risks attached to that surgery.  Then, the skin changes, this I am basing on my own experience as well as that of my TN friends. I have developed acne for the first time in my life since having surgery, while not particularly traumatic, it is quite irritating to suddenly have a complexion that I didn't even have as a teenager. Finally, the emotional roller coaster, linked to the fatigue, I guess, seems to be the worst. I can go from being completely apathetic to almost biblical rage in a matter of minutes...that is by far the most difficult adjustment I have had to make; controlling my actions so that those emotions don't show outwardly.

Now, the PSSS, the actual reason for my post. I have become somewhat silent regarding my TN in comparison to the pre-op advocacy warrior that I was. Whether it is due to the fatigue, difficulty  with emotional control, guilt, pure  and unadulterated despair at the fact that a lot of the TN attacks have returned so soon after surgery....I don't know. What  I do know, and have seen from other very vocal advocates for awareness online, is that after surgery it seems that there are a lot more things going on in our lives than we care to share or know how to deal with, that the crushing despair at not having a miraculous healing  ( even though we went in to theatre knowing it was unlikely), the need to clarify that the surgery was a pain management  option  and not a cure 100000000 times.......
I don't know? What I do know is that I am still passionate about TN awareness, I still enjoy discussing every day things with friends and family, I am still passionate about my work; BUT somehow, my inner introvert was unlocked during surgery and I just feel like I am able to whisper but no longer shout out loud, figuratively speaking. So, like TN, I guess I have another hard-to-explain issue to deal with now, I have Post-surgical Silence Syndrome. Any expert advice is welcome..... then again, perhaps the elephant has shifted position and now plants itself firmly on my mouth?

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader