Where do I belong?

[Narrowminded]

Sooner so happy to hear you’ve been keeping busy. I pray you have a blessed Easter wth family and friends.

Hugs,

Sue

 

[gooseberry]

My first 6 months post als are a blur. Exhaustion was a real issue for me. It took me a few months to learn how to sleep again. I was so used to being up several times a night that I could no longer sleep thru the night. Your whole life is remaking itself. From your sleep, to your diet, having downtime, etc it is all an adjustment. I had to learn to sit down. Sounds crazy but it took awhile to figure it out and that it was ok.

It also took me quite awhile to figure out when I was happiest and what brought me stress. The things that stress me, I pay to have done. Those things that bring me joy, I do as often as possible. You basically are learning to live life again on new terms.....your terms.

I go to dinner with friends, travel with my son, carve out time for a mani/pedi or massage. My mental and physical well being took a big hit. Now I am rebuilding.

 

[Streetwise]

hello i'm 18 years on from where you are! it's never been the same again !my (mom) died February 14 2000 5 o'clock in the morning!

 

[Buckhorn]

Hi Sooner. I'm glad to hear you are keeping busy and occasionally go out with friends. How are you doing this weekend? I imagine the weekends are even tougher (if you work Mon-Fri) with all the extra time. I can't imagine the emptiiness you must feel, and how "foreign" your life must seem to you. I am sure you must feel numb at times. I hope you can get into a grief support group or to see a counselor soon. In the meantime, like others who have gone thru this have mentioned, there is no predictable or proper way to grieve or to heal; it is a personal process we all must figure out on our own. I lost my parents many years ago when I was still fairly young, a brother several years ago and just over a year ago I lost my oldest sister. As much as I loved all of them, they were not as meaningful to me as my PALS, Dave. He is always my first thought when I wake up and when I fall asleep, & has been for nearly 40 years. It is Dave I think of when I have something I just need to share, whether good or bad. When I saw the first robin of Spring, I thought of sharing it with Dave. When someone cuts me off in traffic, I imagine telling Dave about it later. If I've read a particularly good book, or saw a old friend in town, or as the first Spring flowers poked their little heads out of the ground, it is Dave I think of first. So, my friend Sooner, I am pretty sure these are things you are experiencing right now; how to fill the void & who do you share all of the big & little things that occur in your life every day.

I can understand that you feel lost and like you don't quite fit in anywhere but work. I think you will have to carry those feelings for a long time, because as you said, you lost your soul-mate and best friend. That is someone who will never be replaced. However, since you had his life and love to share and had a beautiful relationship I hope that someday you find that wonderful memories will help to sustain you and move you forward. Please know that people here "get" you and we will help to support you whenever we can. HUGS!

 

[soonerwife]

Sorry to hear about your mom Streetwise. You can't lose a loved one and things ever be the same.

It's been a busy few days here. I made it to a couple of annual appointments that I missed last year. I am going to see my pcp Monday to talk about adjusting my meds.

I am going to see a grief counselor next Thursday evening.

All 5 grandkids were here today coloring easter eggs. I boiled 120 for them to color. It was a lot of chaos but it was fun. Tomorrow is our Easter celebration with my mom, brother and sister and their families. It will be fun for sure.

Work has been really crazy the last week or so. I was called for a conference call Friday morning on my day off. My boss's first words are that I am really pissed off and someone is lying... Never a good sign. Luckily, that anger wasn't directed towards me.

I hope everyone else is doing well!

Gooseberry, thanks for sharing your experience. It is helpful and you give me hope!

Thanks Buckhorn! I appreciate you and everyone else taking time out of what I know is a busy life to share. For some reason, there isn't a thank you button on your post?!

 

[Streetwise]

hello @soonerwife my mam (mom) was like you! she was a solicitor !so it's a vocation !rather than a career !she specialised in personal injury !which meant she constantly worried about her clients ,the difference between the US and the UK is you aren't appointed to defend someone who doesn't have defence !you are on a list and can be called any time day or night .
I imagine that system is changing now as the government have almost got rid of legal aid .
I can't put into words the thought of having A LS ,The MND nurses said my mother had the worst form they had ever seen she looked like Stephen Hawking but her limbs were twisted

 

[Narrowminded]

Sooner that is a LOT of eggs. I do hope they all get eaten, but what fun! We didn’t color any eggs this year and I really missed it.

I praying today is everything you are hoping for with your celebration.

Have a wonderful, blessed day with family and friends.

Hugs,

Sue

 

[soonerwife]

I had a good time with my grandkids and with my family today. It was nice to be able to join family celebrations again.

It's gonna be a crazy week at work and then dr and grief counseling. I don't have a whole lot of faith in the counseling session with the hospice group. It sounded as if they offer it but didn't really want to do it so we shall see.

I am pooped, calling it an early night tonight.

 

[Aussiemndcarer]

Sooner wife, I wish that I could race around the world and give you a big hug. I've been feeling lonely today, & thought that I would visit the forum again. It's been over a year now since my Jim lost his battle.
" life goes on" " people move on " but sure I used to think that....now I think that it goes on all different. Kind of broken really.
I'm busy & I've done lots of " busy" things like travel, get my boat skippers ticket, go back to work, rejoin old committees, take up Tai Chi. I even was just invited out to dinner with old friends ( for the first time ) last weekend. I made up the odd number, & couldn't really join in the conversation when they started talking about their retirement trips.....it's all so very different. So I get it, Soonerwife and I feel so much for you. I can only hope that some days you can see beauty in all around you. The world is still beautiful!

 

[soonerwife]

Thanks Aussie! I agree that things are soooo different. I also agree that things are beautiful around us. I never lost sight of beautiful days, even when things were at there darkest.

I really think we have to search out a new circle of friends. Preferably ones that are single and somewhat close to our age or at least that is my thought.

I really like to travel and do things and I don’t like to go alone... I met 5 of my cousins for a 3 night trip not long ago. We really had a good time.

A couple of friends have agreed to go on a road trip soon to some waterfalls. I’m really looking forward to that!

Today, I feel like I’m doing ok... I hope everyone who is treading through this dark journey are as well!

 

[soonerwife]

Well today was a big day... I finally removed Cliff's clothes from the closet. It was hard but I feel like it was the right thing to do.

I have been looking at houses closer to my work. I found one yesterday that I am super excited to look at.

I am working on decluttering my house so I can touch up the paint in case I decide to put it on the market.

I found some cards in one of Cliff's drawers. A couple of the cards were cards he had given me. I needed to see those. Cliff wasn't capable of expressing himself the last couple of years. If was good to see that he believed I was the best thing that ever happened to him.

I also found a letter that he started to our oldest granddaughter. It was only one paragraph but she will cherish it for sure.

The grief counselor told me that I needed to allow myself to grieve so hopefully today was a step in the right direction.

 

[Buckhorn]

Sooner, big HUG to you! Good luck moving forward, but baby steps & move at whatever pace feels good for you. That was a big step in moving Cliff's clothing from the closet. I can imagine the flood of emotion and memories. I know it must have been tough!

I'm glad you found the cards and the special note to your oldest granddaughter. They are treasures!

Grieve in whatever way makes sense to you. There is no wrong way. I truly believe that all of us PALS & CALS have been greiving since diagnosis, so I think that when our PALS is finally freed from The Beast, the rawest emotion may be numbness?

Love & strength wished for you Sooner!

 

[Narrowminded]

Sooner, big hugs to you. You did a lot this week and it wasn’t easy stuff either. As to the house thing, give yourself time. If it’s right, then ok, but don’t rush anything right now.

Hugging you and sending thoughts for peace and comfort as you continue to grieve.

Hugs,

Sue

 

[Jlynn]

Thinking about you too Sooner and am hoping that your finding your way. It was nice to see an update from you!

 

[soonerwife]

Thanks guys!

The house I was so excited about sold before my realtor could meet to look at. That took the wind out of my sail, UGH! I keep reminding myself that deals fall through and it is meant to be, it will be.

I have been going through junk drawers and closets for 3 days now. I am exhausted but still have a ton to do...