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Welcome! I to am a lurker. I want to know and then I don't! But most of all I need a friend that understands so I hope that I can be that for you at one time or another! My husband was diagnosed almost a year ago and I still cry, almost daily! I was told it is okay, that it doesn't mean you are not strong but that you care and love someone! I agree with SMP51, you will be surprised by who stands with you and those who you expected to be there, disappear.
 
I already have a sense of what several of you have said about being surprised in who sticks around and who goes, and for the most part I'm just talking now about people I communicate with but seldom, if ever, see (states and years apart, but supposedly connected by love and family ties). How do you NOT respond to the email that starts out with "I'm emailing because I just can't say these words aloud..."? Maybe they think I need time. Yeah, that's it!

Wildemom--add me to your friends who understand list! Isn't is amazing how quickly we move from the wonderfully insulated place where "those things happen to other people" and to being on of those other people.

Today I just feel like a big dark cloud is hovering over me. I didn't want to get out of bed and I don't want to see anyone or do anything. I've had to, and I've smiled, but I just don't want to have to. I didn't cry until I wrote those words, so maybe my mood will lighten now and I can do something productive.
 
Emails are a good way to put your true feelings in print but you don't have to face that person. You can be crying and writing at the same time. Sometimes I write or type away and then erase everything I wrote and just simply say Thanks for thinking of us and please pray for time. I probably received over 200 cards from friends and family. With each one I cried and thought about how good it felt that someone would take a few minutes and share their concern. It sparked me to send notes of sunshine to friends, family and community members. Maybe it was to thank them or send a clipping from the newspaper. My sister in law said it felt good to get something that didn't require money. I think it makes me feel better to make others feel good. At least you know that person is thinking maybe praying for you, they probably don't expect a lot in return. I feel that dark cloud every morning so I know what you are feeling! The best thing I can do is go to work! I am fortunate that my employer and co-workers accept me however I come. Some days it is in sunglasses and really messy hair. I can cry, scream and laugh and they will drag me along. The other day it was not going so well and a co-worker slipped me a note on lined paper that said Jeremiah 29:11. That verse could not have been more powerful that day or meant more. It just showed me I had made the right move to get out of bed even if I was worse for the wear. My husband use to help us get out of the door each morning. We have three wonderful children and he would wake each one up separately by talking with them, rubbing their back or sharing some of his thoughts. Then as they would come upstairs I would have breakfast made and we would all share in morning chatter. These days that is all on me and there are days I don't do so well. But every once in awhile we will be driving to school or waiting for the bus and one of our children will say "Good morning Mom" that is enough reason for me to keep going! One thing I want to say is that this is a fresh wound, don't ask to much of yourself. You will find a normalcy again, maybe not what you had, but something you can live with. I recommend reading "Until I say Goodbye" by Susan Spencer Wendel and Heavy times by Todd & Kristin Neva. I find myself being sad most of the time while my husband wants to live life to the fullest. It has taken me a long time to get there but I know it is the right thing to do. Our children need to remember us having a good time and not their Mom crying all the time! I hope what I say helps because by no means do I have the answers this is just how I muddle through!

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
 
A very warm welcome to you Nuts :).
 
Hi Nuts :) Please know that the tears won't last forever. There will come a time when you can say those words as a matter of fact, without crying. Focusing on the positives and counting our blessings is how we get through most days. Yes, the tears will come back occasionally, but so too will the ability to laugh. Thinking of you.
 
You all are the best! Yesterday was much better after I got my morning walk in. I guess the day will come when I'll be making circuits through the house, but for right now, it's outside I go. I understand (sort of) the science behind it, but it still amazes me what an impact that little bit of exercise has on my moods as well as my energy. My heart breaks when I read posts from people who are exhausted, physically and emotionally. I'm also appreciative of the people who have stayed around after losing their PALS. Thank you, Phil. Poppies, being able to share with people from half a world away is something I never imagined in my youth. How wonderful! Wildemom, it sounds like your family is your strength, and you theirs. I think you are right about the memories the children will have of this time--and they will appreciate you even more as they mature and truly realize what you've done for the family. What a gift this site is.
 
nuts, I started running when a charity run in my husbands honor was planned. I figured if an ex nefew in law could run fifty miles in 12 hours for him I could run the last four in support of it all. wOw what a difference it made in me. I slept better and felt better....and I hate running, never did it, still don't like it......but feel better over all when I am. I run after dinner when he is settled and before "our shows" start.

footnote: I have noticed, it is an odd reaction I get when ,I with a straight face, tell someone my husband has asl. I suppose they expect tears and grief... but for now we have beaten the monster to the corner and are living with it, it is just part of life for us. I always feel bad for folks I tell as I know they are hearing really bad news and don't know how to digest it. and the people/friends that have dropped out of sight? well, I mostly feel sad for them, I know we are loved by them and one day it will be to late for them to make up for time lost.
 
Welcome! Lurking is good. I am the same, reading more than posting. Especially the CALS, to understand better what my wife, Sandy, is facing. I find strength here and have come to admire many of the contributors.

FWIW,

Max
Max,
I hope you truly realize the blessing you are to her,
Meg
 
Max, I echo what Meg wrote. I am also fortunate to have a husband/PALS who is also determined to make the best of this and look out for me in the process. I hope that monster doesn't take that from us, but I think that reading posts from other PALS with your attitude and mindset will help me remember should that time ever come. By the way, I've learned a lot from your posts and answers to your questions. Meg, I've done that straight-faced thing once or twice now, and as you say, when I don't break down myself I'm left feeling sorry for the person I've told. I know it's difficult news to hear. The other response I've found myself struggling with is "I know you guys are fighters and can beat it." I have to remind myself that it's not their fault they don't know, and then I fight to not let the lurking anger erupt in the form of immediate clarification for them. Then I walk myself through the argument that there are many ways to beat a person, and that love, grace, and as much dignity as possible are in themselves victories. Yep, I'm having just a little trouble with motion sickness :)
 
Interestingly my husband had difficulties with motion sickness in the beginning but it passed fairly quickly. It did return when he fell and hit his head, but again passed. The hardest part with telling some people is they insist that if he just exercised it would help with the atrophy. I have to ask them if they would give the same advice to someone who has a spinal injury in a wheelchair. My husband is now a quadriplegic but has the most amazing attitude. He is a light to anyone who comes in contact with him, for instance he just called me to see the snowfall. He asked me to look up through the snow, as the flakes are massive and you can see them coming from such a height. He sees beauty that I have taken for granted for years, and reintroduces them to me.
Paulette
 
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