As you can see in the title, I’m struggling a bit with this new area of my life. I still cannot wrap my head around the fact that my one planned surgery led to 4 total hospitalizations and 3 total surgeries.
This issue is multifaceted. It isn’t just something I can easily explain in one post. And in an effort to work through it, I think I will try to post regularly about how this is all affecting my mood. I do consider myself severely depressed due to what I experienced since November 1st.
I feel like I need to talk (or write) about it in an effort to not only help myself, but in case there is someone else out there who may benefit from knowing they aren’t alone. Through my fb support groups I’ve learned that I am not the only one who went through a situation like this. I’ve “met” others who had similar complications. Some stories were eerily similar! So I know there are others out there.
Maybe you are reading this because you searched a certain keyword in hopes that something, anything, would show up and you would feel a little less alone during this incredibly difficult time. I’m here. I understand. I empathize.
For the background, let me explain what happened over the last 8 and a half weeks.
November 1st: MVD surgery to treat (and hopefully cure) trigeminal neuralgia and glossopharyngeal neuralgia.
November 14th: Revision of MVD surgery to repair spinal leak.
November 22nd: readmitted to hospital with ventriculitis (inflammation in my brain due to undetermined infection).
December 13th: VP Shunt placement surgery to treat pseudo tumor (also known as idiopathic interstitial hypertension, hydrocephalus, and layman terms: excess spinal fluid).
The MVD surgery was indeed successful for the glossopharyngeal neuralgia and somewhat effective for the trigeminal neuralgia. Spinal leak occurred and once revision surgery was done, more relief was found.
Great, you’re thinking. Success! Nope. Still had headaches and still had two and sometimes three times as much spinal fluid as one is supposed to have. Even after the lumbar drain for days and with medication to reduce swelling and overproduction of spinal fluid, I still had way too much. With all the additional spinal fluid and the pressure it was causing, my brain would never heal from the 2 brain surgeries I had already endured. I had no choice but to have a 3rd surgery to have a shunt put in.
Being in the hospital more than I was home in the month of November really took a toll on my mood. And I’m still finding myself crying at times. Trying to explain my feelings has been tough. How do you make sense of the statement “I feel like a stranger in my own home”? Life went on without me. My household was maintained by my father. My children cared for, chores done, meals prepared, etc. Life continued without me. I returned home from each trip to the hospital feeling more and more like a stranger. Feeling like I belonged back in the hospital rather than at home. And then comes the stress of trying to return to normal life. Which got worse once my help left and I was on my own to be the adult again.
In the hospital, all decisions about your activity are planned for you. Strictly monitored by your nurses, residents, surgeons, etc. Meds, meals, showers, walks. It’s all decided for you. You literally just lay/sit there and let every single thing happen when you’re told. But real life doesn’t work that way! And OMG was that hard to readjust to!
And do you realize how immensely exhausting brain surgeries are? My brain, as I affectionately refer to as “Brain”, doesn’t want to do a damn thing. He (yes my brain is a dude) is like “Hell no. Thinking cannot happen. Naps are better” and who am I to argue? Brain has been through a lot recently. But I push and brain decides “ok, if you insist on thinking, why don’t you ponder why you said no to kissing Adam when you were 13ish?” and there I sit thinking about something that happened over 2 decades ago and still not accomplishing a damn thing on my to do list!
That is my current struggle. Thinking I’m mentally getting back to being me, or at least this new version of me (that’s another post) but Brain has other ideas. I feel like it could be months, possibly years, before Brain forgives me for the torture.
And trying to explain my weird, random feelings has proven incredibly difficult. I try to find the words or comparisons to make this make sense to someone who hasn’t been through it and I’m coming up short. I struggle to find words and fight to find something that even remotely resembles a coherent thought that I can use to explain this to friends and family. It’s damn tough.
Anyway this is my first attempt to confront the “adjustment disorder with depressive mood” publicly. Apparently majorly publicly since I plan to also share this with my fb friends and family. It isn’t about pity. It’s about trying to explain what I’m dealing with and how what I’m fighting may impact my interactions with others. Now and possibly for months to come.
PS: Thanks for supporting me while I work through this. A follow, a like, or a simple smiley face emoji in the comments is all it takes to show your support and make my day.