It seriously pisses me off! Sorry for my language but I’m feeling so frustrated not only right now, but for all the other times before. And, all the times I know are still to come.
I’ve explained on so many occasions that I’m not good with directions and having short-term memory issues, on top of it all, makes it even harder. It doesn’t matter that I’ve driven the same route so many times before, it’s about my level of comfort and minimising my stress levels in getting from point A to B, that will determine the outcome. Every single time I need to drop my kids off anywhere, I will ask questions like, “What time do I need to wake up?” or “What time do you need to be there by?” or “How long will it take to get there?”, only because it helps me plan better so I don’t have to rush. My eldest son KNOWS my pet peeve in the response I get from my husband to the last question. He responds by giving me directions! I mean seriously, did you NOT hear the question? I’ve told him so many times, “Don’t give me directions, I WON’T remember” besides, that’s what the GPS is for (the one reason I don’t need to stress and thank God for that!)
Does he listen? NO! Instead, he gets angry with me for not listening to him. I suppose my face and body language says it all (picture it – eyes rolling, heavy/slow breathing and just plain annoyance written all over it). Once I even turned my back on him and just walked away while he was talking, I literally felt like I would burst into tears right then and there. (This is the stuff that breaks up a happy home…)
It leaves me so frustrated and no matter how hard I try, he just doesn’t get it. How difficult does it have to be for the people in your life to get that having a condition like Hydrocephalus and brain surgery literally messes with your head? Ugh! Thankfully, my son has told me he just knows his dad shouldn’t even try to explain the way he does because I’ve said as much and, just gives me a knowing look every time it happens. I could seriously spit fire at him. Then, once I’ve calmed down, I feel emotionally bruised and want to curl up into a ball in a corner and just be left alone because this is what I’ve been left to deal with since diagnosis and brain surgery. Life dealt me this card and I’m dealing with it in the best way possible…for me. Maybe if I were born with it and they didn’t know the person I used to be so well before diagnosis…maybe it would make a difference.
I left work feeling a bit under the weather, mental dullness, slight headache and feeling extremely tired. This certainly does not help my brain in processing anything, much less take directions. I suppose if he really understood, he would know that the way I am physically feeling contributes to my overall state of mind. But…
Family members can seriously just add fuel to the Hydro fire that burns inside but ironically, this “water” doesn’t extinguish anything, it only makes the situation worse. Maybe I’m wrong, maybe I need to lighten up or maybe just maybe enough is enough! Maybe I’ve just given a false impression of always having my s**t together so it’s kinda hard to believe that this struggle is real…The bottom line is, We are not faking, something I wish was more understood than assumed.
Do you ever find yourself in this situation? How many times do you have to explain your “limitations, challenges or obstacles” to those closest to you? Is it really asking too much for them to hear you? This is one of those times where I truly wish they could just walk a mile in my shoes…
K
March 16, 2018 at 9:56 amI understand you so well! Having Hydro myself, I can relate to your experience
Skyewaters
March 16, 2018 at 10:13 amThanks for your comment K. ?
Duncan Salloway
March 16, 2018 at 9:23 amExcellent article Skye, and yes you have to wonder after all the Brain Surgeries and procedures that you have gone through together, why they can’t at times remember our condition has its limits? Yes a lot of times we look great like there is nothing wrong with us (on the outside) but inside has taken its toll and yes we can overcome and recover from a great deal of it, some even recover fully. ( I am not one of those lucky ones) besides my short term memory issues is my hearing has also suffered greatly i even have to now use hearing aids. I make notes for everything that is on my mind because after my next thought the previous one is gone somewhere in that Jummbed Brain ?? I have been married to a very strong beautiful woman for over 20 years, it was at about our 10th year when my Hydrocephalus was discovered due to a bad fall on a frozen driveway. We get along great but there are those times? I get your situation 100% I wish everyone did also. Your articals May help people grasp our situations better but I think only those of us that are the “problem cases” as my NSG puts it will totally get each other’s stories. They love us with all there hearts but seeing us getting better they sometimes forget our limits Like we do ourself.
Always trying to improve.
Never give up!
Skyewaters
March 16, 2018 at 9:43 amThanks Duncan. As bad as my short term memory is, I certainly remember your story of the fall you had on that frozen driveway.?
I do wish everyone understood but I know it’s not that easy unless you’re going through it yourself ?. Oh well, all I can do is share my experiences and hope it helps someone…somewhere.