Tuesday, January 17, 2017

Four years... is that even possible?

Can you believe it is going to be 4 years in less than 2 months since I had this surgery?? I can't! I absolutely can't!  Time fly when you are having for... or not... hahaha Time fly ALL the time. Fun or not. That's what I figured out. haha

So, I was very detailed about my recovery during the first year. After all, the first year was said to be crucial. THE holy grail. THE time period where my body was going to get back to where it was always going to be.
"After one year, where you are is most likely where you will stay". I was told.

I was told. But never believed 100%. I heard stories after stories of recoveries that were still ongoing after years and years. Especially when it comes to be brain.  The brain is THE one organ that has the amazing power to fix, compensate, renew, replace, itself, in ways that even the most amazing specialists cannot understand, let alone explain.

I have spent the past 3 years talking a lot about my "lasting struggles" in different posts. Some of them showing a side of myself I didnt the first year.  Helpless, depressed, frustrated, alone, defeated. I have undergone 18 months of psycho therapy following a neuropsychology evaluation that had left me feeling quite vulnerable and misunderstood.  The therapy has helped me tremendously in many levels.

Now that I have come to a place where I have a decent balance and ditched most insecurities, I am ready to make another "post op" update. haha I will keep it simple and short by copying  my one year mark update and adding to it at the end of each paragraph. I think it will be nice and surprising for you, and I specially, to see the difference.

So, here it goes! 


Walking/Physical Activities:  

March 2014
My goal is to build some endurance  back up!!!  I dont have asthma, but it is as if I do if i do anything that raise my heartbeat.  A rise of heartbeat makes me struggle to breathe, and I am on a mission to see if i can improve this.   STILL IMPROVING.

JANUARY 2017
I struggled a long time with this issue!!   I assumed it was a deficit from surgery that I couldnt do anything about.  Doing any type of physical activity would rise my heart beat very high, very quickly. I would get even dizzier than I already always am. There was no way I could think of exercising. I passed out on occasion.
Summer 2015, I decided, with the encouragement of my psychologist, to go see a cardiologist.  I was amazed when he told me that my resting heart rate was between 110 and 125 BPM.  I now understood why I always felt some sense of emergency. My heart was always pounding. He told me it was due to the vagus nerve damage, from the surgery, and i could definitely get my heart rate lowered by taking medicine as simple as beta blockers. So, I have been on Beta Blockers, a medicine called Metropolol, since then. It has helped me tremendously. It has not helped at making it easier to do physical activities, my heart rate still goes crazy, but at least my resting BPM is normal now.  

Numbness: 

March 2014
My left side is a little bit numb, but not that much.  It has improved a lot!  Its weaker, but its really not something that I think about or affect me. My hands and feet will get numb quicker than normal if same position too long, like it does everybody. What is 20 mins for most people is 2-3 mins for me. Like holding a phone, my hand gets numb quick, so i switch hand.  NEW NORMAL

JANUARY 2017 I was "right" when I concluded that this was my "new normal", because this is still true today!  I notice it even more now that I am on my feet more. I went back to work June 2016. After a few hours, my legs are stiff, feel a bit asleep, and I honestly forgot what they are supposed to feel like, but I know the feeling in my legs is not what it was before brain bleeds and brainstem surgery.  But it is MY normal, and I only think about it at the end of a particularly hard day when i have a hard time to walk. 

Hearing:

March 2014
I "hear" just fine, except one angle, damaged that has been there a long time ago. My latest hearing test showed 20% loss in one hear and 30% in the other. So not as bad as the initial loss of 80 % and 60% before surgery!  I am convinced that my tinnitus contribute a lot at me "not hearing" right. NEW NORMAL

JANUARY 2017
Hey, my judgment was pretty good at knowing what was "it" and what was still improving haha My hearing is still the same.  I have physical hearing loss, and tinnitus hearing loss.  Physical loss meaning I loss some of my hearing, and tinnitus meaning that the constant noise in my head makes it also difficult to hear. I did notice that hearing anything that is behind me, is almost impossible, and hearing someone who is talking with their head turned away from me. Forget it.


Speech:


March 2014
Its part of me that I talk with a good articulation. I am not being a snob. STILL IMPROVING. 

JANUARY 2017
I actually sat here and wondered what the heck i meant when i wrote "its part of me to talk with a good articulation. I am not being a snob" haha Then i went OH, YEAH!!   What I meant is that in order for the words to come out right, i would have to articulate slower, and very clearly. If I didnt do this, I had a tendency to slur, or mumble.    It is still like this when I am tired, sick, or just at the end of the day. I don't think it will get better, but it is not something that people really notice, since I have become very good at controlling it!  

Dizziness/vertigo/balance:

March 2014
SO SO much better. I rocked 4 inches heels at Jay's Christmas party, no problems!   UNLESS I am sick or very tired. I get very light headed, dizzy and I know that i have done too much. (I still experience these if I am sick, overtired or just did too much)NEW NORMAL

JANUARY 2017
I actually get dizzier quicker and more now as I live my life pretty actively. It doesnt take much for me to get dizzy, light headed, room spinning. A noisy room alone will make the room spin and get me nauseous.  Definitely is worse now then when my body didnt allow me to do too much. It is something that I actually do not remember how it feels like, to not be dizzy.  When I am sick, its very difficult. Its hard to sit, hard to walk, impossible to drive. Its a good thing I am not sick often.  It is definitely a big part of my life and a big chunk of acceptance.  I fall a lot. I hold on to walls a lot. I say dizzy, but its also balance issues. 


Tinnitus:
March 2014
PERMANENT  (poop brown is a good color to define it)

JANUARY 2017
Tinnitus is something I simply do not talk about because it is the only way i found to deal with it.  I am feeling very anxious and am teary just writing this.   Next.  


Vision: 
March 2014
Other than needing a completely new prescription, bi focal, and seeing double when i look down to the left, I dont really have any complaints about my vision. I can drive just fine, and I dont need my glasses all the time to function just fine.  STILL IMPROVING ? 

JANUARY 2017
I wouldnt say that my vision improved, but it changed! I still see distorted when I look down on the left, but my bi focal or not working anymore for me. I dont think i need them anymore, so it looks like the near sighted vision did improve! But the far sighted has definitely gone worse, but I think that is age related, and not surgery haha 

Fine motor skills

March 2014
Its hard. But i can write. Still just a few words, but its improving in look :) just not so much on how much i can write at a time.   I drop a lot of things, especially small object. I dont know know if its because my fine motor skills are damaged, or if its because holding object makes my hand go numb. I think its both. STILL IMPROVING or Permanent??

JANUARY 2017
It is amazing, that for 2 years, I have not notice any improvement in this. My writing remained extremely painful and pretty much impossible after a few lines. I would have to take a lot of breaks after 2-3 lines if i wanted to write a letter, or if i was filling out a form.   Then, one day, I picked up my pen to write a grocery list like I always did, and after writing down about 10 items, i realized that my hand was not cramped, not painful, and I could still write. Not only that, but my writing was better!! This happened May 2016. 3 years 3 months after surgery. Its like my brain had this back.  Now, my writing is not this elegant feminine writing it used to be, but its ok! My hand still gets tired, but after one page instead of one sentence! I get the feeling that it will keep improving.  Now, that is just for the writing.  As for holding object, this is not changed or improved, so I am pretty sure that this is it. I drop small objects because my fingers cant grab them, and I drop bigger objects because my hands get numb holding them. 

Sensory and Cognitive:

March 2014
Both PERMANENT and STILL IMPROVING. Simply because it will never be the way it used to. Progresses are very very slow, but I still believe in things getting better!! 

JANUARY 2017
I would say it has improved because a big part of my psycho therapy was to learn to recognize my triggers. What brought on those episodes of intense confusions. I have learned to listen to my physical and mental limits. It is not smart for me to deny them. It seriously can impair things like my driving, understanding crucial things etc.  It is a daily struggles to listen to detailed stories, instructions, simple math problems. Its hard to process information.  It is extremely difficult to understand written instructions. It is much easier for me to watch a video about it. Having a visual is very helpful.  When my children tell  me about something that happened at school, or just talking to me about an event, I have to focus on what they are saying to fully understand. It is very very easy for me to get lost. I often respond with lack of emotions in my voice, like "oh that is cool", like I am just being polite, but i dont sound impressed. haha That is what they told me. haha I am working on that now.  I explained to them that I truly am very interested in all they have to share with  me, but I am still processing the information once they are done saying it. haha I often willl take an extra 5-10 mins on my own thinking of what they told me and very often will laugh alone 10 mins after the fact, when I am finally done processing all the info and i finally get the whole picture. haha Poor kids. 


Aches and Pain

March 2014
 I've never been one to focus much on my aches and pain, but i will put it out there for you. My neck still cant turn very far to the right. I use those special dead angle mirrors on my car.  I have horrible headache if I have been doing too much or lack sleep. My incision site is still very sensitive. However, compare to the pain and physical limitation pre surgery, as you saw, I forget about those :)  STILL IMPROVING

JANUARY 2017
Neck pain is still there and never really changed. I live with it. Incision has changed from being sore to being itchy. I swear I look like I have a bad case of lice. I am always scratching it. hahaha Having my neck rubbed feels so good tho, its better than chocolate. Seriously...  hahaha 



SO, there!!   There are other random small things, but I dont feel necessary to talk about. It would be like you telling me about your planter's wart or your sore back. I mean, we all have things we are going to deal with. It's life.
But these were the main things that took a big spot in my recovery journey. So as you can see, it is true that the first year was very good at determining how the future was looking like. BUT some things improved and still are. Some things stayed the same, but I learned to deal with the better. Some things have become harder, and some other I simply will not talk about.

I seriously believe that the best tool to a good recovery is to be positive.  Allow yourself to be frustrated, to cry, to pity yourself, just for a bit, but do not, NEVER, anything you do, but do not, stay there. Never. You hear me?? You can cry, you can scream, you can call out to God and scream "Why me?" but do NOT.... EVER... stay there.

Don't stay there.

Be well my dearest! 

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