Just my thoughts...

Just my thoughts...
The randomness that is I

Friday, August 7, 2015

I Hate Dialysis

Brain Fog

I've been on dialysis since 2008. Most people look at me and can't tell. I try to live life as normal as before, but sometimes I just can't. I stopped writing blogs because I'd really have something to say and when I'd start writing, the words wouldn't come. It's very frustrating. I'd stopped reading so much because I'd forget what happened in the previous chapters and have to go back sometimes. It didn't happen all the time, but enough that I'd wondered if the Alzheimer's that plagued my Grandfather and his sibling (possibly siblings, I don't know enough about them to compare) was beginning to surface in me.

One particularly frustrating day, I posted a question to the Facebook Kidney group I belong to and I was SO glad I did!! Apparently it's something that happens to dialysis patients and transplant recipients and it even has a name, Kidney Brain Fog! That coupled with getting into my mid-40's, I have to write so much down just to remember these days.

I often have conversations with a co-worker and mid-sentence I'll go blank. I can look at something and not be able to quickly remember what it's called. Simple things. Like "notebook" for instance.

I have a notebook that I write in at work, so I don't forget the tasks I'm given. So very frustrating, but I keep trying.

I always had a great memory. Never forgot faces. I mean years could pass and I could recall such small details about things, people and situations. No more. I'm sure all my surgeries haven't helped either. A lot of Fentanyl has gone through my body and who knows how that will affect me in the long run.

I've always liked word games and I was good at them. Not so much anymore and again, it's frustrating. I play a lot of very common words, but I'm not playing to win. Just playing for fun. I usually keep a lot of games going because I know I need the challenge. just like trivia games. I have forgotten a lot of history facts and Trivia Crack reminds me of that. More than anything, I put together puzzles on an app I've downloaded.

I stopped taking classes, because it was hard to retain information. I've just accepted that until I'm no longer on dialysis, memory will be an issue.

I'll take it over some of the other issues I see my peers suffering from. It's embarrassing though.

Well tonight, I was talking to a good friend after playing a word that I came up with after guessing, because as hard as I tried, I couldn't find a word in any of my letters. One thing led to another and she, at some point, said I was just guessing and I agreed. It was not a big deal to me because it kept my mind busy. Well she thought that was awful and that it was kind of pointless to play without knowing what a word meant.

She made me feel absolutely stupid. She hurt my feelings so deeply, I couldn't even say anything. I just pulled my cover over my face (I was at treatment) and I just cried.(Like I'm about to again).

I quickly ended the conversation.

Having a disease that no one can see gives you limitations that no one knows or thinks about until you say something out loud. I get tired very easily. I can walk 30 minutes on a treadmill one night and the next time I'm winded and hurting after 10. It's frustrating and depressing. I thank God for others going through this also, because I can share my feelings with them and it doesn't make me feel judged. It's things like this that make me stronger, but I'll probably cry yet again tonight just because I didn't speak up...that upsets me too. My friend and I have the type of relationship that we can tell each other anything, criticism included and I know she meant no harm, but I honestly think it was the most hurtful thing that's ever been said between us.

Maybe I'm overreacting. Maybe I won't be as upset in the morning, but a word of advice...don't assume that what you see and what you know to be are always what they are. Some people find strength in trying to be as normal as possible while fighting a battle they aren't sure they can win. Sometimes we don't share our feelings because it will hurt people to know our experience, so we continue to suffer in silence.

1 comment:

Sharon said...

I know exactly how you feel.Before dialysis I was on the ball now I forget the simplest things..I thought what the hell is going on brain fog is right.i don't look sick but everyday I struggle just to get out of bed ,have a shower get dresses maybe get a chore done then I'm tired again.I work full time night shift caring for the terminaly I'll. This is my life and people at times suggest I am being lazy.dialysis 8 hours a day on top of it all never mind the symptoms as you well know there are a list of those.Soo I feel your frustration.