How?

Hi all,
I wish I could post something up lifting. Right now I feel like I’m sinking and just so lonely. In the last few months it’s just starting to hit that I will always have to fight pain, fatigue, and limitations. How do you accept of having crappy diseases that nobody completely understands? most of the time I just want to crawl into a deep dark hole and stay there. I’ve read the grieving and accepting thing and I’m no where close to accepting. How the heck do you get over having this?

Kari-
I was there yesterday. I texted a friend, asked her to pray for me then took lots of meds & went to bed. I’m fairly new to this; and I flat out told the dr I am working on acceptance but not there yet. afraid if I ‘accept’ it that I will move into irrevocable depression from loss of hope. still talking to God about it - a lot, but I’m far from learning to deal with it.

Hi Kari, you are in my prayers! Sometimes I am right there with you. I have to try to handle a day at a time but at times like you are describing it is more like trying to handle it an hour at a time. I think most of us go in and out of the different stages of grieving. I am still pretty new to this but sometimes I seem to slip in and out of different stages all in a very short amount of time. Take care.

I've been working with grieving people which made me post this - hope it helps some

http://www.livingwithtn.org/forum/topics/an-important-reminder-for-yourself-and-your-loved-ones-caretakers

Hi Kari

It's really hard to do but start to let go of things you can't control.

Instead of focusing negative energy on things you can't have or things you lost (most of which you can't control) start to appreciate the good things. Yeah, I know - the bad things are huge and the good things are small but if you change your focal point you might find that losing the bad things aren't as big of a deal as we make them out the be and the good things - we don't take them for granted any more.

It's really cliche and it sounds like bull doo dah when someone first tell you, but just give it a try. It's not going to work everyday - but it might help get you through some of your worst days. It sure will give you some appreciation for a good day.

For me - I can't do everything I want with my kids at the drop of a hat like I used to - But I still get to see them everyday. Everyday I still get to talk with them about life, tell them I love them and I am still here to watch them grow up. There are a lot of people in this world that have been robbed of that opportunity - but I am the luckiest person in the world to still have that. So instead of banging my head against the wall because I can't go for a boat ride and fishing with my kids and my dad - I take the opportunity to rest up and wait patiently to hear all about it when they get back.

I hope this helps a bit. The anger and sadness won't disappear overnight, but hopefully day by day you can begin to replace some dark thoughts with some good ones. And if you have a hard time, just add me as a friend and I'll give you a few examples. But don't get me wrong. I have my share of bad days and tears too - and the rest of the crew here gets me through.

Elaine

Great answer Elaine, I will try to use it, thank you! :-D

Elaine Kobelka said:

Hi Kari

It's really hard to do but start to let go of things you can't control.

Instead of focusing negative energy on things you can't have or things you lost (most of which you can't control) start to appreciate the good things. Yeah, I know - the bad things are huge and the good things are small but if you change your focal point you might find that losing the bad things aren't as big of a deal as we make them out the be and the good things - we don't take them for granted any more.

It's really cliche and it sounds like bull doo dah when someone first tell you, but just give it a try. It's not going to work everyday - but it might help get you through some of your worst days. It sure will give you some appreciation for a good day.

For me - I can't do everything I want with my kids at the drop of a hat like I used to - But I still get to see them everyday. Everyday I still get to talk with them about life, tell them I love them and I am still here to watch them grow up. There are a lot of people in this world that have been robbed of that opportunity - but I am the luckiest person in the world to still have that. So instead of banging my head against the wall because I can't go for a boat ride and fishing with my kids and my dad - I take the opportunity to rest up and wait patiently to hear all about it when they get back.

I hope this helps a bit. The anger and sadness won't disappear overnight, but hopefully day by day you can begin to replace some dark thoughts with some good ones. And if you have a hard time, just add me as a friend and I'll give you a few examples. But don't get me wrong. I have my share of bad days and tears too - and the rest of the crew here gets me through.

Elaine

Hi Kari,
Please know you are not alone. This is the point I am currently at. I think it is just now hitting me that this isn’t something that’s going away. It’s extremely hard to accept. What is helping me this week is this group and all their support. Elaine’s comment is great. I am learning to rest 100% on my bad days and truly enjoy and not over do it on my good days. I wish I had more answers but I’m stuck where u are. Yesterday I was hurting so bad. I couldn’t go to work or enjoy my kids. I laid in bed all day in pain. I was so depressed. I felt like this life of mine is being wasted. Today I’m still hurting but not as excruciating. So I’m going to try to get focused and go to work. I don’t know how the day will go but at least I’m trying I guess. It’s an everyday battle of the mind. You are welcome to call me or email me. We can get thru this together. Just message me and I’ll send you my contact info. I will be praying for you today.
Nikki

Thankyou once again guys. Today is a little better, but still a roller coaster. Really wish I could get off this roller coaster or that somebody would stop the damn ride. My husband tooke out to garden center earlier to try to cheer me up (all my seedlings die when the pain got really out of control the last couple of weeks). I’m hoping this might at lest give a little comfort tonight when I plant the new plants we got. Also I’m trying to change my thinking towards the positive but it’s rough right now.

Nikki
I’m sorry you’re going through the same thing. Maybe we can vent and lift each others sprints out of this muck.

Hoe you all are having a pain free and happy day. Again thank you all for the kind words and advice.

Hang in there Kari and Nikki

Good things those seedlings aren't kids or pets!! They are just seeds!! The world won't come to an end if they don't make it. Keep on planting them if your hubby is willing to keep picking them up . lAnd ooking on the bright side, you have a great supportive husband!!

You are probably doing better than you give yourself credit for. Pat yourself on the back - you made it through another day

Elaine

Just one more thought I have been reminded of lately-- I know it professionally as someone who works with kids in both a counseling and educational capacity but I have to be reminded of myself with this nasty TN stuff is that kids are very resilient and they need to learn to deal with times of pain and disappointment because they are certainly going to have to deal with the hard stuff in their own lives as they grow and mature. I wish that my own kids won’t have to deal with painful and hurtful times but the truth is that they will have these times. Just a thought and something I have to remind myself when I have a bad case of Mom guilt. Take care!

What TL says is true. Its hard for the kids to learn to appreciate what they get and learn that it won't be the same anymore.

Probably the worst mistake I made at the beginning was taking too long to realize I couldn't do everything with the kids the same anymore and I spent too much time frustrating myself and the kids trying to keep doing things the old way. They still carry a lot of resentment.

Since I made mistakes I can't say it will be better to do it differently but I wonder if it would have been better if I spent more energy trying to get them to understand new mom and trying new things rather than trying to do it all, the same old way.