Things I miss...

[KatieNBoyd]

I miss the fun, I miss being a wife, a friend, a lover, I miss laughing, I miss my pals paying attention to me but now he makes every effort for others that hardly come by or call. I miss my opinion meaning something. Today is a low day for me. We are heading to Mayo in Rodchester tomorrow. My PALS has told everyone that they (Mayo) is going to fix him next week (we hAve never been there before). These days to him I am the cook, laundress, driver, whipping post when things aren't right (the chint strap hurts, my mouth is dry, i have a headache, no i DON'T want to take anything for it, can you do something to warm up my feet, can you do....) . I don't feel like the one he use to call his Queen. I feel taken for granted. Sigh...thank you all for being around.

 

[affected]

Oh Katie,
My heart broke to read that denial as I know you will be there as questions are asked in the coming week about how the cure is going from Mayo

I could resonate with every single loss you marked off there. I still miss the laughter most, I never in my life laughed as much or as deeply as I did with Chris.

ALS just takes every single thing

 

[scaredwifetx]

I Katie, I was going to start my own thread today about this very topic so hope I am not hijacking yours. I just wanted to let you know that you are not alone and my heart breaks for all of us CALS.

I packed all our bags last night for a trip to Houston to see my granddaughter play in a softball tournament and to visit the family. Steve decided this morning that he did not want to go, did not want to use the wheelchair. He dared to tell me that I would have more fun without him. That's his excuse. I loved the trips we use to take, listening to music, talking and going back to the town where we met. I miss being a wife and each day I lose more of it. I also lose more and more of my Debs. I have to let go of what I have become and the changes are not always good or positive. We do very little together as a couple and my time spent with him is worrying and taking care of things so we can be ready for whatever is to come.

I do not feel like his queen anymore and mainly feel alone when around him. He has decided to take the route of doing very little other than watching tv and playing his ex-box. I often wonder if our PALS and everyone in our lives understand how much our life changes.
We have to adapt to daily changes, feel grief and worry. I can honestly say that sometimes I feel like I am also falling apart. I try to hold it all in but now I am clearly not ok with any of this.

I hate everything ALS has taken from us. fun and laughter. Steve and I felt so lucky that we met even though late in our life. We had fun, could talk for hours, and had a love built on mutual respect and we always did what we could for each other. I know I will hear that I need to be positive and make the best of it. How??? You can't make the best of anything together when only one of you is in for the ride.

I wish I could offer you support Katie just know I feel your pain. I cried all the way to work this morning and have to drive five hours tonight by myself. Maybe I will turn up the music really loud and sing until I can no longer sing. I also hope by sharing that we can help someone else or be helped. I have came to the conclusion that yes ALS takes from us but does not take our heart. it just breaks it a little each day. I know everyone says to do your best and enjoy the time you have together. Really... hard to be that ray of sunshine through all the storms.

 

[scaredwifetx]

I just want to apologize for my earlier rant. There are clearly a lot of losses and suffering going on this week and I am being a crybaby.
I did not mean any dis-respect.

 

[pittsburghgal]

I can't tell you how much it helps me to read these posts. I have felt so very alone and just knowing that someone else can understand what I am going through is priceless.

I have dedicated my entire life to taking care of my husband now and yet I do not feel the closeness with him that I so want to have, knowing that our time together is so limited. He also spends his entire day watching TV. He speaks to me only when he wants something or needs help. He has not left the house since Nov. except for 2 doctor appointments. I can not leave him alone and have no one to stay with him except for my daughter, who works long hours. I also rarely leave the house. I feel that he is so critical of so much of what I do for him. All of this on top of the deep pain of seeing someone you love deteriorate weekly is so very difficult. I also often feel like I am falling apart.


Sharon

 

[scaredwifetx]

Sharon, thanks for the reply. Sometimes we aren't aware when what makes us feel guilty helps others. We often feel guilty when we feel like ranting or when we are falling apart. Knowing someone else understands makes it all a little easier for some reason.

 

[KatieNBoyd]

Thank you all. Jon saw the travel wheel chair that has been loaned to us. Saying "I don't need that" he sits at his computer and uses up our wifi allotment. I had to put parental restrictions on it. �� I have cried on each of your beautiful contributions to this thread. I forgot a title to list "insurance linguist" . Scared wife no apologies needed drive safe. I usually have to turn up the music lout enought to cover those stupid voices in my head. Evidently we are all right where we are suppose to be. Hugs to everyone. Time to pack the car. Pulling up my Big girl panties and tossing the wet tissues. ��

 

[Katy Sunshine]

I wanted to say thank you for the honest posts here. They helped me more than you know. It reminds me to be more patient and more grateful to my partner who is caring for me. Sometimes we forget to say thank you and forget how much this is affecting *you*. Thank you for opening up this dialogue for us.

 

[hovihea]

Sometimes it's good to know that I'm not the only one in this boat.

 

[scaredwifetx]

I have to update this thread. I am at my grandchildrens and guess who is with me? Steve called me at work and told me his brother and him loaded the van up and he was going. He said we never do anything together. The ride here was just like old times. Played all our favorite music at a very high volume and right before we got here he played our song. Chasing Cars. Snow Patrol. I only cried the last 10 minutes of our trip. Gotta listen to the words of the song. Puts your time together in prospective. Sometimes I guess we just need to let them know how you miss the old times and leave the house pouting to wake them up. Lol. I know none of this is easy for any of us and I am so glad this was a positive thread. At the end of the day we are all in this together and sometimes it takes a tribe.

 

[pittsburghgal]

So happy that Steve decided to make the trip with you and that you could have a little bit of joy in your life. Have a great trip!

Sharon

 

[vltsra]

So glad that Steve went with you. Hope your trip is wonderful.

I also hope that this forum is a place where we can say anything without judgment. For me, I miss having hope for the future.

V

 

[Janis J]

I recently received a message from a company that helps people find jobs with the subject "1 in 5 people are in the wrong role. Are you?". I laughed and cried.

 

[Katy Sunshine]

I have to update this thread. I am at my grandchildrens and guess who is with me? Steve called me at work and told me his brother and him loaded the van up and he was going. He said we never do anything together. The ride here was just like old times. Played all our favorite music at a very high volume and right before we got here he played our song. Chasing Cars. Snow Patrol. I only cried the last 10 minutes of our trip. Gotta listen to the words of the song. Puts your time together in prospective. Sometimes I guess we just need to let them know how you miss the old times and leave the house pouting to wake them up. Lol. I know none of this is easy for any of us and I am so glad this was a positive thread. At the end of the day we are all in this together and sometimes it takes a tribe.

I know we have not officially met, but I just wanted to say how happy I am for you. That's wonderful that you were able to share those memories and build some new ones. You made my day and gave me hope. Thank you.

 

[KatieNBoyd]

Hugs to all. In SD at the Days Inn. Low key My PALS is tired he did not sleep much on the drive. On to Rochester tomorrow.