Catching up

NinaP

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Lost a loved one
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Hey guys. Been having some really bad days. Mums 6 months anniversary two days ago. Cried a lot. Very down in general. Fear is getting the best of me again. Everything slips off my hands, even the nails clips, everything slips, like i cant close fingers, cant hold the keys right. Sometimes fork too, like i cant hold it. My leg has been worse too, always tight. I go to bed and think of the mistakes. Giving mum antidepressants when she wasnt even depressed cause doctors didnt know what she had. The physio therapy. Her broken hand hurting her like hell and i was insisting on her to do it, we didnt know what she had. She was calling me crying. All the memories. Closing my eyes and pushing away the memories. I didnt hug her enough. I miss her. I didnt kiss her enough.
 

lgelb

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Re: Moving Forward

Hey Nina, everyone has bad days. Anniversaries like six months are tough.

You miss your mom, but don't ever think she didn't know how much you loved her.

Don't let your mind shut down your body. You can be of great help to others and that will help you feel better as well.
 

NinaP

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Lost a loved one
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04/2018
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Re: Moving Forward

Nah i feel ok here reading everyones pains, complains. Im scared with the knee pain. Im try to be a bit from fit but im scared. Scared of getting sick. Im also nearly broke. The paper work for my inheritance costed me nearly 1000e and i need to give the irs about 2500 euros. I blame myself for not thinking about myself. I should have kept something for me. But in Greece you pay everything concerning als. Anyway. I had an emg in my leg, one needle as you know but he didnt give an analysis or anything. Just the diagram i posted here. Maybe i should go for a full emg? Feel so done u know. Like everything is going against me.
 

lgelb

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Re: Moving Forward

Nina, I've moved these posts to their own thread so your concerns can be separate from Sue's. It's not a general check-in thread.

I think we covered your own health in other threads, and there is no reason to think you have ALS. So especially since money is tight, I would spend it on the basics and work on what can help you feel better.

I know you want to lose weight, for example. The good news is, walking is free!
 

NinaP

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Messages
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Lost a loved one
Diagnosis
04/2018
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Its Greek Orthodox Easter here tomorrow. Im cooking. Traditional easter dinner. My sister is here, my nieces, my young brother with his family. Again here as every year. But someone is missing. My sis cries, a lot. I told her you bringing me down too. We got to get used to this, remember the good times. I wish you tge best. Kisses and hugs to all of u. I miss u. Think about you every day. Im waiting for the moment i wont be scared. I will smile really openly and broadly without that shadow in the back of my mind. I love u guys. Here is our red eggs, after Christ is risen we break them. This is the way mum was colouring them, with leaves from onions.
 

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lgelb

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Nina, I wish you a joyous time together and I'm glad you are helping to comfort your sister. The eggs are beautiful!

While you are at the table, sometimes it's good to hold hands, signifying that you are a strong family, and exchange favorite memories or thoughts of how you will live better in the coming year. It does not have to be sad -- like lighting a candle or lifting a glass to her and her hopes for you. She is in each of you, as always.

Best,
Laurie
 

wishmobbing

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Happy Easter to your whole family!
 

Narrowminded

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Happy Easter Nina, so good to hear from you. I hope you can have a joyous day.

Hugs
 

NinaP

Distinguished member
Joined
May 24, 2018
Messages
141
Reason
Lost a loved one
Diagnosis
04/2018
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GR
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KO
Hey guys. I miss you. I come here rather often to read the news and posts. I just wanted to say hi. Today is mums 1 year death anniversary. Heavy day for me. What can i say? This year, has been difficult. Iam ok though. Iam strong, iam better, rested, my leg doesnt hurt much anymore, its stronger. I havent managed to lose weight. The fear is slowly leaving me, the fear of having this.

This year has made me a worst person. More selfish. Changed me. I am still bitter. Angry. Iam calmer though. I get out live my life, have fun, had a great vacation. Work is going great. Iam not talking with my brother, i feel he has been unforgivable the way he behaved after mums death. And i guess he doesnt want to aproach me either. Apart from that, me and my sisters remain very close, very connected.

I miss mum. I feel sad because she lost so many things, she couldnt tell us anything. What she felt, what she wanted in life. I stopped going to church much, i still believe but my faith is weaker, i dont hope much anymore for goodness, iam suspecting more about people, i question things, iam more cynical. I used to think do good, hope good, share, offer, give, give and good things will come. Now i believe thats how you become a victim and everybody uses you. Mum was so giving. Such a gem. She never stopped giving even sick. She gave so much love, so much of herself. I actually believe that maybe that had caused her body to rebel, and got sick/

Anyway. I wake up everyday feeling blessed iam alive, i can speak, eat, drink, walk, raise my arms, legs. I wake up everyday, checking the news for a cure. I talk about it. I try to make others understand. But i also stopped talking about it. Its a burden you carry. Not many can understand.

We are having a memorial on Saturday in church, and then lunch, for friends and family. Its the supposed last big memorial the Greek Christian Orthodox hold. After that we honour our dead as we want in private. After that, my mum belongs to me, to keep her alive, as i want to. Smiling, walking so quick, strong, her wonderfull talk, her stories, her hair, her cooking her magnificent cooking that i miss so much, her smiles, laugh, her calls, her songs, her singing her favourite Greek songs. Her voice, her smell. I dont know where she is, i hope she is there she believed she would be. Near God she loved so much, she hoped so much. I hope she is happy.

I would never stop being grateful to found you, this place, and the support and information i got from you. Iam blessed to have shared so much love with my mother, so much care with her, what we shared these 8 months she lived with ALS in the worst condition will stay with me forever.

I dont know what to say. Hope you are good. Hope for a cure. Somewhere someone will find it.

Love and huggs from me.
 
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lgelb

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Great to hear from you, Nina. Virtual hugs from us all, back.

I am sure that as time goes on, you will take your calm, your love and hopes forward, lose weight, and meet some of your other goals for your life. I'm glad you and your sisters are supporting each other and wish you all strength at the memorial on Saturday.

Best,
Laurie
 

NinaP

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Joined
May 24, 2018
Messages
141
Reason
Lost a loved one
Diagnosis
04/2018
Country
GR
State
KO
Great to hear from you, Nina. Virtual hugs from us all, back.

I am sure that as time goes on, you will take your calm, your love and hopes forward, lose weight, and meet some of your other goals for your life. I'm glad you and your sisters are supporting each other and wish you all strength at the memorial on Saturday.

Best,
Laurie
What to say about you. How patient you were with me. Anyone ever visits greece please Please come find me. Please. You have a dear friend here.
 

Lkaibel

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Beautiful Nina. My husband passed from ALS and my mom got dementia at roughly the same time, do I think I can relate to you all around.

This journey can make us more grateful.CALS are friends around the world. ❤
 

MarieLaure

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Glad to read from you Nina
Hugs
 

Narrowminded

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Nina you sound so much better. I’m happy you are moving forward and your pain in the legs is leaving. As Laurie said, you will manage your goals. I’m so glad you checked in.

I’m slowly recovering myself. Hasn’t always been easy and I know I’ll have more rough days a head, but together we will all get through.

Hugs
 

wishmobbing

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Joined
Dec 5, 2017
Messages
725
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
Hey Nina, thank you for checking in! Happy to hear you feel stronger and you and sisters are good together.
I check into the forum less and less but think of y'all often and tell my offline friends stories about you. Wanna play catch-up with me?
My PALS one year anniversary this summer hit me, too. Much to my surprise I must admit. One of the worst weeks after he passed. Gladly that's not too rough as I've been really well and enjoy my (not so) new (anymore) job, my apartment with a view, my old friends and everything else that is enjoyable about life. Even fresh love as a very good friend of mine and I discovered that we are more than just fans of eachother. :)
 
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