Friday, September 23, 2016

The good, the bad and the ugly.

I am doing my best to stay positive - you may notice it is kind of a theme with me.  I admit there are times where I am "fake" positive but as they say fake it until you make it, right?

I have done pretty good so far, owning the idea of having a tumor, making light of it and trying to not let it control me...but that changed yesterday, Arnold finally got the best of me and reminded me that it is controlling me and my life and that I will have to make some changes to my life from here on out.

You see I love people I love to go and spend time with people go out and enjoying life, well yesterday I went to Happy Hour with my work peeps to a really awesome place that had an indoor bocce ball court and it was right up my alley!  I played a few games of bocce ball, and hung out with some great people, I am choosing to not drink alcohol until after my surgery and I didn't mind not drinking in fact I drank cranberry juice the whole night....what really got me was how damn tired I was, I can go go go (just ask my husband, I am always the last to leave as he says) and love to.  I was home by 8:30 and you would have thought it was the day after drinking a bottle of wine the way I felt but in reality I had over done it and didn't listen when the fatigue set in, I had an awful headache and was beyond exhausted.  What a crummy way to just have to admit that I need to slow down and take it easy.

I have a list of symptoms but by far there are two that have bothered me the most.

Fatigue: all I want to do is nap, I always feel like I have not slept for days after running a marathon.  I try to explain how exhausted I am but I can never explain it enough and I know how important it is to rest but when I am driving and feel as though I am going to fall asleep it just scares me to know how difficult it is to deal with such an invisible symptom, it is bad enough that this whole thing is invisible but to have a need to sleep all the time just SUCKS.

Memory:  OR LACK THERE OF......people who know me are aware that I have a pretty good memory and just don't forget things.  I am having a hard time with that lately, over the past two months I started noticing a couple of things, one is that when I would go to say some things they wouldn't come out it was like I just forgot everything that I was going to say and I am sure I would just have a dumb look on my face.  The other is when having a conversation I will be 5 minutes deep in the chat and suddenly I just forget what we were talking about and have to ask them to remind me what we were talking about.

Tinnitus: This one is more so annoying, there are times where it is so loud I just want to shake my head until it stops, the worst is when I lay my head on my pillow with my tumor side down, my ear rings even more when that happens.  When driving if I hit a bump in the road my ear chimes and when walking outside the wind causes a very loud swooshing sound.

Headaches: these are what caused me to get an MRI that lead to my diagnosis, I am still being treated for my headaches as though they are not associated with my AN and it is helpful but I am worried about after my surgery and having headaches that are not fixed with my current medication.

Hearing loss: mine was not gradual, at least I never noticed it rather I woke up deaf in one ear. It has improved and then gotten worse again and the better again - I go back and forth with this symptom....the reason is because I know that once I have my surgery I will loose my hearing permanently and will have to deal with single sided deafness (SSD) so either I wish it would just go away now so  I can start to deal with it BUT the other side of me wishes I could make the most of the time I have left with my hearing like being in a loud place without being overwhelmed or talking on the phone with my left ear.

All of these symptoms make for a long day in my world lately and I mostly deal with them but I feel like I need to explain that I am dealing with them so that others will understand why I am irritable or not present.

I hope I am not making people tired of being supportive - I hope they are not getting sick and tired of me always talking about my acoustic neuroma.  I just don't know what else to talk about, I just rely on them to drive the conversation away from my daily struggle.  I am so thankful for the people in my life who go out of there way or take the extra time to make me feel better.

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