I remember in a vague, hazy way waking up post-op, somewhere between the OR and the ICU. I imagine the way I felt was similar to that of how a newly born baby must feel. My head was heavy, swollen, and mangled. My lungs were wet and I coughed and struggled (though I've never seen a new baby reach for the stethescope of a nearby staff member and put it on her chest). I felt confused, overwhelmed, and angry. Most of all angry. I had been pulled from this glorious sleep and forced into the light and told to be alive and fight for myself. No machines would do it for me.
So, despite the anger, that's what I did. Like a baby, though in a much abbreviated and significantly more aware way, I learned to swallow my food, to speak in an understandable way, to focus my eyes, to walk and move my arms and legs smoothly, to pee on my own, to think and process and pay attention.
I won't deny that there have been days in the last four years when I questioned whether it was worth it to have had surgery, and worth it to fight. The last four years have undoubtedly been the most difficult of my life. I feel and think differently than I did before surgery. After the obvious recovery issues that everyone could see on the outside (those survival type skills), there has been so much recovery to do on the inside. Additionally, where recovery has not and will not be possible, I've had to learn and develop adaptations. The chronic issues that have ensued following surgery have not assisted in this process.
At four years post-op, however, I know it was worth it to fight. I will never be my old self, but, despite the changes and my limitations, I am learning to be okay with the 'reborn' me. I'm now becoming comfortable with knowing my true limitations. If nothing else, I can laugh at my downfalls. Sometimes there is nothing else that can be done. Not everything can or even needs to be fixed. I said it myself the night before surgery, "It just is, and it's great." (In hindsight, I laugh when I remember how I prefaced that thought with regret over not having had a "spiritual epiphany".)
Things currently stand at a happy, though maybe a little bit unsure, place. I've been off all medications and following the "just be okay" plan for about a year now. I was so delighted in August when I realized I'd gone a whole year without one single doctor's appointment. Whether it's truly a good thing to have gone this long without seeing any sort of medical professional for anything is a bit questionable, but I enjoyed the brake anyway.
I continue to be plagued by headaches and realize that chronic migraine will be a forever part of my life. I wake up most days with a headache to at least some degree, and will feel it come and go throughout the day. The frequency of my true migraines varies significantly from week to week. Some weeks will have three or more migraine days, some just one or even none. When I have a true migraine I will sometimes take a Motrin or Tylenol, but other times just wait it out. Once recently, I was desperate enough to take a percocet. I don't get any sort of aura that a migraine is coming, but do have the classic sensitivity to light and sound. I get confused and "fuzzy headed". Afterward, I get a postdrome where I am exhausted and somewhat useless. Sunlight seems to be a significant migraine trigger. I try to keep sunglasses on my vampire eyes as much as possible.
On the plus side, being able to keep a decent attitude and maybe even a little bit of a smile through such significant pain is an awesome skill worth having and developing. I like to think it makes me a little more of a better person.
In my last post, at three and a half years post-op, I happily declared myself cured of autonomic neuropathy. It turns out, this isn't quite true. While my symptoms continue to be significantly improved from when I was on migraine medications, and I'm sure I no longer qualify as POTS, I'm also sure that I do have autonomic issues. The heat and sun of summer brought a relapse of many symptoms, including not just increased headaches, but also dizziness, exhaustion, weakness, temperature intolerance, and nausea. For many weeks, I was again unable to exercise due to plain exhaustion like cannot even be described. In the future, I'd like to live somewhere cooler and more temperate, but I doubt that will ever actually happen. I have no idea where the best place for me would actually be.
I try to stay relatively well hydrated to help with the dizziness. It is nowhere near as severe as it had been, but I caught myself squatting down in the kitchen while making breakfast a couple times in the last few months. If I can get myself to exercise, it helps with the exhaustion, but sometimes I just have to wait the exhaustion out. It's kind of a vicious cycle, the exercise vs sleepy weakness. I know that, even without my autonomic issues, I will always require more sleep than most people since having had brain surgery. At least now I'm usually good with a stable 8am wake up time, and no longer fall asleep anywhere and everywhere.
I never know if I will be hot or cold, or if my feelings of hot or cold will correlate with actual ambient temperatures. Wearing layers helps.
I get nauseated pretty much every day, most often in the 10am hour. No amount of small, frequent meals or high protein snacks seem to help. I've started chewing ginger candies, which does help, but it's frustrating to feel so bad so much of the time. My entire GI system in general is kind of a mess. Restaurant food, in particular, seems to make it unhappy. I keep my bag stocked with a good supply of Immodium, Pepto, Tums, etc. If you're ever not feeling well, I've got you covered.
The most frustrating "invisible" type thing for me has been the slower processing of my brain. I can't keep track of things the same way I used to. My memory is notoriously terrible. Worst of all, I've been having trouble from time to time with word finding. Matt says that sometimes in conversation the responses I give don't always make sense. I've had a couple upsetting moments when it was difficult to read out loud to the kids. I'll stumble over words, or the words seem to move around the page, or I'll see them and know them but can't get them out. There was one particularly scary time when I lost my words while talking to the kids, and as I tried to stumble for them I just couldn't find them. I had a general idea of what I wanted to say, but no idea how to get the words to come out. It was terrifying. Matt looked worried and asked if I was okay, and all I could do was shrug. Luckily that's only happened once.
Still, I feel so much less intelligent. My vocabulary has suffered in general. I can't concentrate long enough to read a book. Many things I do learn, I don't retain. I'm happy for the internet being there to let me look up random things whenever I need to, and not judging me that they are things and words I should know (and do somewhere deep down).
Being deaf in one ear is both not that bad and worse than I could have imagined it being. The white noise hiss in the "dead" ear is forever present. I can't handle a bunch of other ambient noise. Even the hum of the dishwasher is upsetting when I'm trying to listen to a conversation or TV. I'll generally try to avoid noisy places like busy bars or restaurants. All the noise is so disorienting that I begin to feel confused and dizzy. Being unable to locate sounds can be upsetting as well. Still, I can talk to people, hear the world, and listen to music, so it's not that bad.
My left eye is holding on and stable as far as I know. I've been a bad patient and not been to see Dr L. I still use Refresh Plus eye drops between 1-3 times a day, and thick, nasty ointment at night. It sees fine (with glasses) and doesn't usually hurt or burn toooo much, so I can't complain. I hate the gold weight and the tarsorrhaphy, but it's better than the terrible pain of a slowly dying eye, or a corneal transplant.
My face is what it is. This has been the hardest emotional item to tackle and get used to as being the new normal. I hate pictures of myself, and cling to any I have from pre-op. I'm sad that a lot of the people I now know never knew my "real face". But, no one treats me differently, despite what I see as an obvious, disturbing crookedness. I guess I can see this as a good thing. Anyone who is going to judge me by my lopsided smile and confused eyebrows (yay sinkinesis!) probably isn't someone worth getting to know anyway. I may not be beautiful in a scientific way, but great personality traits like being lighthearted, caring, and a bit of a bad-ass are even better, right?
The most important thing is, that at four years post op I am the healthiest and the most at peace that I've been since this whole ordeal began. I'm no longer angry. I no longer question whether it was worth it to fight. It just is, and it's great. I do question what my next MRI could potentially show, but I also know that if I have to I will be able to fight again, and it will end in just as much dance party as I had by myself last Sunday.
Of course, there would be no celebration without my amazing support system. I could not ask for a better husband, parents, and family. Co-workers and friends have been incredible in supporting and remaining confident in me. I'm lucky to have added, over the past 6 months in particular, to the people I can count on in times of struggle, and I'm looking forward to many more celebrations in the future.
