Fighting the negative side of our disease

[Irishgirl57]

I run into a lot of people who say "you can't have dementia you seem fine to me"... Well they don't see me on days like today. Days that I am totally overwhelmed with the simplest of tasks. Still recovering from surgery a month ago and the aftereffects.

It's so easy for people to say I'll just go for a walk, do something good for yourself to make yourself feel better. When all I want to do is crawl up in a chair with my Blankey and block out the world. I hate nonfunctioning days, I don't like being confused by things that I used to do with no thought, but now they so overwhelmed me that I can't even begin to think about doing them. Hate the disease but love the person. No love or support or anything else is going to help me through this, but me. It's going to be right foot left foot keep moving forward and on until I'm on the other side of this.

Acceptance is the key, acceptance is the key for me living in this life with this disease. Also accepting that I'm going to have days like today. There's always tomorrow, there's a possibility of coming out of this in another couple hours. But I have to take it as it comes, because it is what it is. One thing is for sure, I hate the negative side of this condition. I am not a negative person, I am a positive person glass half full,

Going to lite my favorite candle, put on some of my soothing lotion, and do some prayer and meditation to see if I can quiet my mind.

 

[Sue J]

Hi Irishgirl

Good to see you posting, glad you are through your op, which wasn't that long ago so allow yourself some slack.

Yes, I agree with you acceptance is the key, I was speaking to my HH about this only the other day and she rightly said it is an ongoing process in whatever circumstance in life but especially so with this condition which trips you up as one day you feel 'ok' more like yourself and then the next couldn't be more different.

I like you am not a negative person and feel at times consumed by a disease which would to some make me seem that way and like you it is the part of this condition I too hate the most.

Hope your mind quietens as you pray and meditate and that tomorrow is a better one for you

Love
Sue

 

[purplehead]

Negative side of disease

Hi I hate those days when u don't no who you are my son is 18 in few weeks I am afraid to organise anything in case I am vacant that day I call bad days vacant because they are empty

 

[Irishgirl57]

Thank you both for your response. It's so wonderful to go to a place where I can share exactly when I'm feeling without overwhelming the people around me.


I went to bed at 8:30 as I was so overwhelmed from the day. Got up early this morning which is unusual for me, had a nice cuppa coffee, got to speak with my husband before he left for work, and I am going to do everything in my power to have a positive day. I'll keep coming back

 

[Irishgirl57]

I was going through some of my previous posts. I am recovering from a second surgery and one month out. This disease is a disease of repetition. I'm kind in the same place I was February, and I guess I should be grateful I'm no worse. But on days like today when I have an emotional hangover from yesterday's events, it's hard to find gratitude. It's hard to be grateful when you know you've heard someone close to you because you opened your mouth and your brain doesn't engage.

Prayers for all are suffering in any capacity, especially those that bodies turn against them make their mail minds think other things then what really is. The way we come off as irrational and emotionally unstable sometimes.

I know this too will pass. Just went and got my nails and toes done, my darling husband drove me since I don't drive anymore. Sitting here with a Blankey, a candle burning and I'm going to again do some prayer meditation, because that's all I know how to do at this point. Praying for forgiveness because we know we can't take back the words That were said in one of episodes .....

 

[aprilbday]

I use to get my nails done, now I am a bit of a germ-a-phob . I worry about the tools they use. I mean are they clean?

 

[Irishgirl57]

I use to get my nails done, now I am a bit of a germ-a-phob . I worry about the tools they use. I mean are they clean?

I have my own set of tools that I bought from them that they keep in a box with my name on it. Number two it's Its gel polish and I also bought my own. I am a very bad nailbiter all the way down and around the sides... I pick up them. I've had them on for 15 years and I've only had one infection. It's a matter of preference and it's a matter of what anyone wants to do. Having pretty nails make me feel better

 

[aprilbday]

What a fantastic idea!!!!!
I love that you have your own tools!!! Smart!!! And yes! Yes! Pretty nails make you feel wonderful!!!! Yay!

 

[jhoward]

"you can't have dementia you seem fine to me"...

I run into a lot of people who say "you can't have dementia you seem fine to me"... Well they don't see me on days like today. Days that I am totally overwhelmed with the simplest of tasks. Still recovering from surgery a month ago and the aftereffects.

It's so easy for people to say I'll just go for a walk, do something good for yourself to make yourself feel better. When all I want to do is crawl up in a chair with my Blankey and block out the world. I hate nonfunctioning days, I don't like being confused by things that I used to do with no thought, but now they so overwhelmed me that I can't even begin to think about doing them. Hate the disease but love the person. No love or support or anything else is going to help me through this, but me. It's going to be right foot left foot keep moving forward and on until I'm on the other side of this.

Acceptance is the key, acceptance is the key for me living in this life with this disease. Also accepting that I'm going to have days like today. There's always tomorrow, there's a possibility of coming out of this in another couple hours. But I have to take it as it comes, because it is what it is. One thing is for sure, I hate the negative side of this condition. I am not a negative person, I am a positive person glass half full,

Going to lite my favorite candle, put on some of my soothing lotion, and do some prayer and meditation to see if I can quiet my mind.

Such a good attitude, Irishgirl; we can all learn from it as we deal with this wretched condition, at least in the early stages (Let's not even think about the later stages!)

Do keep on posting - I'd love to hear more.

 

[aprilbday]

I can't light any candles anymore. I use the battery kind. Not the same I know because the beautiful warm dancing flame is just amazing. I settle for the battery-operated ones.

I am still at the stage where I am surprised when my memory fails me. As it happens more often, I will probably not be so shocked and accept it as the new normal.

 

[Irishgirl57]

I can't light any candles anymore. I use the battery kind. Not the same I know because the beautiful warm dancing flame is just amazing. I settle for the battery-operated ones.

I am still at the stage where I am surprised when my memory fails me. As it happens more often, I will probably not be so shocked and accept it as the new normal.

I have tart warmers that have timers on them, they're wonderful

 

[jhoward]

dealing with money

Today's the first day that I've found money a problem. Can't remember my card numbers, which cards I prefer, all that stuff. Yesterday I felt fine about it, this evening I'm struggling and really depressed - it seems to have got worse so suddenly..
I've asked a good friend to come round and help me get things sorted, and also (maybe) take on the Enduring Power of Attorney, and I'm planning to do all those sensible things.

But Wow! I'm thoroughly demoralised right now - I'd somehow thought, I guess, that I'd get away with the dreaded Alz lightly! and I just kidded myself that there was plenty of time to sort all that money stuff - more fool me....

I try and look on the bright side - good friends, great kids, a house that suits me, all that. But this evening i want to give up on the whole thing of making an effort. (And yet, of course, i'm damned if I'll give up my independence. I know it's a stage I probably have to face up to, but it feels like s***, (excuse my French!)