Confession that I"m not normal

Jen -

You sounds like you are describing me. We are in the process of figuring out the new normal for our lives.

If I go out on Saturday, I can't guarantee to get up and have breakfast with my family on Sunday. My husband cooks and my daughter does a lot, but I can't guarantee I can make it into the kitchen fully dressed.

I (who used to be the financially responsible one) had to turn all of the bills over to my husband. I can't remember anything. I carry something with me and write things down almost every few minutes. I put something called "Aqua Notes" in the shower so I can write things down as I think of them while I shower. If I remember ... which seems optional even though I stare at that while I am taking my shower. Of course even if I remember and remember to rip off the paper and take it with me, I misplace it until days later. Sometimes I get out of the shower and think of things and then walk around the house repeating them over and over like a Zombie muttering "brains" (Brush teeth, put on underwear, put on socks, pay bills, put on pants, dry hair, face cream, write a work report ....)

I am computer technical with certifications, but my husband often has to sit with me because I can't get things to work. Things I taught him. I know the big things, but I can't remember the little joiner pieces that make the process work. (I copy instead of cut, cut instead of copy, forget to put ink in the printer). I have to have him work with me to look at important things I write for work because I miss joiner pieces from thought to thought. If I weren't able to work at home and move my work around my good and bad days, I would have been fired. I'm very afraid they are going to figure it out and fire me anyway. Some days they are not getting their money's worth out of me.

I get very angry when I make a lot of mistakes. It's frustrating not feeling capable some days.

I am late for appointments because I set something down that I need (while I was putting on my coat) and can't find it anymore. Little things like .... keys .....

I often can't get up in the morning and walk into things when I do. Some of this is Fibro and some is the drugs I take for Fibro.

My train of thought permanently derailed. I have to write posts outside of here and review if they are more than a few lines (lol - I can't seem to post just a few lines). When I shop, it takes longer most days because I can't put the list together coherently and have to double back constantly. My daughter shops with me most times, but I'm trying not to add to her load. But to watch me, I'm like a dog with squirrels everywhere. I have to repeat the next couple of items under my breath so I don't see something and lose where I am in the list.

I am very afraid that without someone here to walk me through details, I will make major mistakes. My husband is going away next week for training for work. He is talking about calling me a few times every day to make sure I have taken meds and am waking up. He calls me almost every day now anyway "just to say hi" which is a polite way of saying he wanted to make sure I got started.

I know I am very lucky to have my husband and it isn't the same as what you are dealing with. I just wanted to let you know that you were not alone in feeling this. I'm working on habits, etc to try and make me self-sustaining. My daughter is worried about me and I don't want this to affect her applying for school. There isn't a day that goes by that I don't feel like I'm not doing everything I should be.

I haven't done disability yet, but it's weighing heavy on my mind right now. I'm worried that if I get fired, it will be harder to get disability and then I will have no money coming in. They are telling me that I have additional things related to Central Nervous System. Things I don't want to deal with right now.

I haven't dealt with disability, but I really feel for you right now (not just because we are both dealing with this). Either way, you are not alone. I have been spending a lot of time putting together "toolkit" lists because some days I don't even remember what worked last time I had a particular pain. I'm trying to make notes and keep them together.

Maybe things will be easier when you live with your aunt because you will be less stressed and will be able to take rest regularly and not wear yourself out keeping up with jobs. Either way, I will keep my fingers crossed for you.

Take care of yourself Jen.

Ps, it was actually suggested to MIL to get fired when she was applying to Dis because it then showed that it was impossible for you to work with your condition. Seriously contact a lawyer -- it doesn't hurt to get a consult.

AnnaB! I don't open my mail either. It is bad news! Some other thing I can't remember or handle.

I just got back from teaching dance. I was competent, mostly, for 3 hours. I focus a lot on theatrics and improvisation. Thank god for improvisation! I struggle terribly with set combinations. I have to write everything down. Even stuff I performed in the past, I can lose.

Jenni, I'm so sorry, your struggle. I'm there and understand. I think my daughter sees it and is why she's encouraged me to go to my aunt's. I write lists, then lose the lists. I start looking for the list I lost, and my thinking, gets derailed looking at the dishes piled in the sink. I pick up a dish, and the thought about the list is gone. What list? At the store, I remember that I was looking for the list. Dance steps enter the picture. It was a fouetté soutenu, right? Music plays in my head. I leave the store with some things I don't need, and forgot the toothpaste and shampoo. Wash hair with hand soap. Brush teeth with the travel tube. Meanwhile I got a salad from Wendy's. I'm hungry. Is it February or March. I just remember the rent... My back hurts. I'm have to get up early in the morning. Panic Attack. Hide under covers... I'm exhausted and confused. If life wasn't so demanding and stressful, I'd be this amazing artist.

i used to help people like me. I wish I had someone like me to help me!

tango
-I can dance but I can't walk.

Jen - I meant that to be a supportive response and it ended up just me purging my frustration. I'm sorry about that. It's been a stressful week and it didn't come out the way I intended. I've been trying not to post when I'm in one of those moods :). What I really meant to say was that I understand what you are going through. I hope it gets better with your next steps. I wish you had someone like you to help you too.

Annabanana - Going out is a specialized process (not for the faint of heart) that involves taking every possible pain relief solution you have and piling it into bags so you don't have to stop at the store or beg someone for things (tissues, pain meds, sweater) when you get to their house. It usually looks like you are moving in with them which may be why people greet you at the door when they are feeding you dinner and inquire if you knew this was just supposed to be a few hour event. By the time you arrive, you grab some of the items that you packed and consider grabbing their couch for a nap. My other version of going out is finding a comfortable movie theater to sleep through the movie. This one is slightly less time consuming, but ultimately more expensive, lol. Plus .... I miss a lot of parts of the movie and sometimes can't follow the plot. ;)

I do open the mail at my house. My husband keeps asking me not to. I tend to put it somewhere safe. Safe from bill paying, second viewings and safe from my memory. I didn't mean to misplace it or put it in a cookbook or my daughter's homework ... it did it all by itself. Clearly the mail has legs and a mind of its own. It couldn't be me .... I don't remember doing that .... :)

My husband just stated home to clean the house from top to bottom because he couldn't stand it anymore (thank jeebus). Seriously, insurance should also underwrite housekeeping costs when associated with Fibro.