coping with a new identity

[myooshka]

Hi just wondering how others have learned to cope when you feel like your losing yourself, the person you used to be. I was Mya the wife who loved to keep a beautiful home, landscaping and garding was becoming my new hobbie, cook and bake for my family, was the glue that held my family together when times became tough. I was the 30 year old esthetician, took pride in having myself looking good. I was the person who always took care of others made sure everyone else aroung me was alright. Mya the perfectionist. That's why this is so hard for me because I am such a perfectionist. That's why all my clients loved me, I never gave them anything but the best. If I was gardening I would measure with measuring tape my plants before I planted them. That's what makes this extra hard for me. I can't do things to perfection anymore, so I give up and would rather not do them, because when I do it reminds me I am ill. I know this is a bad attitude. It is so tough being a perfectionist almost to the degree I would consider myself a little compulsive at times and then you have to see your house not how you want it. My once fashionable wordrobe has been traded in for a housecoat or sweats or what is easiest, so much for the fashionable accesories. I look at my closet and it feels like an old life, the old Mya who used to be decked out, dressed to the nines. It also drives me crazy with my son, I know love is number one, but I always imagined shopping, having him all dressed up, taking him everywhere, And I feel bad because he is stuck in in his pj's at home with mom. It's just so hard I was always the one who was smiling, positive, would light up a room. Now I feel as if I have lost myself. Any advice on how to cope?

[patricia1]

I too had to say goodbye To the wife I was and the friend I was Alway entertaining in my home Noted for my cooking and decorating ,Christmas used to be my best time of year My home looked like a winter wonderland My grandchildren would come over christmas and sleep over and the next day was a grand breakfast We all wore red pajamas I brought for all of us.
I remember the nurse I was How I loved caring for my patients ,I loved waking up in the morning and going to work The life I had is over and now I have excepted the new one. Its very frustrating at time ,when my brain wants to do things but the hands dont move. I learned to enjoy different thing and appreciate the little ones, Life is different but good. You see I am still alive to be with the ones I love and thats really all that counts.In time you will do the same God Bless Pat

[myooshka]

That's what my husband tries to tell me our lives can still be good, just different it's just so hard to get used to a new way of living I guess it takes time. I'm still in mourning of the woman I was, the mother I'd always pictured I'd be. Acceptance is a hard thing even though I see my body changing and my life is changed so much it's hard to accept. It's not like I want a diagnosis of mnd, but I know I am waiting on a diagnosis of something neurological. I don't know if putting a name to this will help me to accept.

[Mike27]

You are still you, you just happen to have ALS!
YOU are not your clothes;
YOU are not your accessories;
YOU are not your job;
YOU are not your hobbies;
And YOU are certainly not ALS...you are a marvelous person and a loving wife and mother, who is having a rough time right now, but these feelings will pass. I promise!

I said some time ago that before ALS I could do, maybe 10,000 different things. Now I can do 3,000.
Should I focus on the 7,000 things I can no longer do or concentrate on those I can?

You still have a sharp mind and no matter what, you're a mother. No disease can ever take that away!

You also write well, so there is that avenue. (I'm just saying!:-D)

Good luck and know that this too (low feelings) shall pass.

[ltr]

I think this may be one of my biggest problems, changing who I am. When I joined this forum that is the first thing I learned. How to gradually change things, adapt to the person you have to be now to still enjoy your life. It is a very, very difficult thing and I have set backs all the time. But, it can happen, Other members have told me, Mya, you have to make new goals and new dreams.

Pat, thanks for sharing that part of your life with us. I could picture you and your family and it was a wonderful vision. I'm sure you have found other ways to make these memories.

[myooshka]

Not to say I was or am a shallow person, but my appearance and how I appeared to others mattered to me. I worked in the beauty industry for ten years so how you look is important when you are in the business of making others look good. It's just a hard thing to shake. I realize beauty is only skin deep. I said to my husband imagine people used to look at me because I looked good and was attractive (TOOT TOOT< there goes my own horn) and now people one day will look at me cause I look funny. I know this whole image thing I'm dealing with will pass, I'm sure everyone goes through this.

[ltr]

Mya - I look so bad without makeup and my hair done that people don't even recognize me if they have the unfortunate event of seeing me like that! I have asked my daughter, if anything ever happens, that she will make sure she does something with my hair and covers my ghastly undereye circles! Isn't it terrible, how we feel. I have said the same thing, people will make fun or say look how she changed! I know, there is so much for us to go through with these changes.

[mamaoftwo]

I get that Mya. I know there are bigger things to worry about when you are facing ALS ( like dying and so on) but I understand what you are saying. Guys - please do not be offended by what I am about to say- but isnt it harder is some ways to be a woman with MND? I mean you think of the effort we have to put every day into being presentable. We wear make up, we wax/shave, we blow out our hair etc etc. Girls you know the routine.
Then you have to face the prospect that you can do some or none of those things for yourself and you wonder what you will look like to the husband/partner that once loved you, or just to friends and colleagues. You wont look or feel like you anymore. Read the page "a day in the life of" on Aimee's website. She talks about trying to put mascara on without stabbing herself in the eye and trying to shave her legs etc. Things she knows her fellow male PALS dont have to do.
I get what Mike27 was saying. ALS is not who you are, it is what you have. But that doesnt make it easy to accept that you end up sitting in a wheelchair, no make up, frizzy haired with some upper lip hair in dire need of a wax or some roots showing that desperately need to be colored. I understand totally what Mya was saying because I was the same. I was a corp exec, high flying job, wore great clothes, presented myself really well. Now I try to make sure me and the kids are all clean/bathed and that is about the best I can do.
It is an adjustment no matter what kind of woman you are or were and it isnt an easy one to make.
I just try to remind myself that my husband married me for who I am not what I look like. The world around me will just have to learn to see a new me. I have a feeling it is one that will look a lot older and disheveled than the previous ones but I doubt very much that my baby girls will notice.

[myooshka]

I am part Italian, I told my husband if I can't please make sure my eyebrows and lip are waxed. God knows how big my stache could get.HAHAAha. Not to mentioned the chin hairs. I've gotten past the hairy leg thing already, although I don't think my husband has. He always says I should go get waxed. My reply being I've got enough aches ans pains, I'm just not into having my hair pulled out anymore. My face that's one thing I like to keep looking half decent. I always think I look so different now, my girlfriend said to me, Mya you don't look as different as you think, it's just you don't smile anymore.

[Icanmanz]

Mya - I look so bad without makeup and my hair done that people don't even recognize me if they have the unfortunate event of seeing me like that! I have asked my daughter, if anything ever happens, that she will make sure she does something with my hair and covers my ghastly undereye circles! Isn't it terrible, how we feel. I have said the same thing, people will make fun or say look how she changed! I know, there is so much for us to go through with these changes.

Oh, Itr, my heart goes out to you people. I am really out of words. I really wouldn't know what to write down, because I have never been in those shoes, other than being the mother of a young man that was struck by this horrible disease, and he is in Heaven. The only part of your post that gnawed at me was when you said that people will make fun, or say look how these folks change! May I ask you something without really hurting your feelings? Sweetheart, what kind of people would make fun of someone with als? Oh my God, just what kind of people would do that? That is terrible! May God bless you all!

Irma

[CindyM]

I think some of us my find new friends who appreciate the beauty inside each of us. Lots of PALS on this board have said that when they get really impaired some freinds drop off but they were never true friends anyway. those who love us won;t care how we look. Cindy

[Icanmanz]

I think some of us my find new friends who appreciate the beauty inside each of us. Lots of PALS on this board have said that when they get really impaired some freinds drop off but they were never true friends anyway. those who love us won;t care how we look. Cindy


Hi, Cindy! I agree with you the beauty of a person is inside. I felt so bad after I read the posts from these folks concerned about their changes. Again, I am out of words. I wouldn't know what to hink, because I have never been there. I would like to tell these folks that God loves them regardless. If some of these folks on Earth would have the gall to make fun of these folks, and ask harsh questions, who needs them? God loves you, live every day to the fullest, love your loved ones, amd sorry to say this, but I am out of words already. My son once told me, "Mom, I am not dying of als, I am living with it." Those were my baby's words, and I will never forget them. We're all dying, but we just don't know when. God bless you all!


Prayers to all Pals,
Irma

[patricia1]

Irma I see you are having a real hard time with the death of your son I think you would really benefit from a support group with people that have lost a love one.I have a friend that lost her son and finds these groups . I think this group is opening too many wounds for you. I wish you peace God Bless Pat

[Icanmanz]

Irma I see you are having a real hard time with the death of your son I think you would really benefit from a support group with people that have lost a love one.I have a friend that lost her son and finds these groups . I think this group is opening too many wounds for you. I wish you peace God Bless Pat

Hi, Pat! I did not mean to offend anyone. Isn't this board about basing your opinion without getting vulgar? I do not remember ever getting that way. Pat darling, you are wrong about me Just tell me what is it that offended you, and I'll apologize!

having a real hard time. I love God, and I trust him. My son told me when he was dx'd to accept it as one of God's plans, and for my son I did just that. Is it annoying you that i keep posting memories about my son, or what? I came here as a friend, and I am getting a cold shoulder. I have, in no way, gone out of the way, other than posting my opinions like everyone else. Do me a favor sweetheart, just what is it that I had posted that you disliked, and I'll apologize to you. I do not believe in going up in arms when discussing a disease that is so horrible, that is claiming the lives of so many finr folks. I am here for my son, not for myself. God bless you, sweetie. Prayers to you.


Praying for Pals,
Irma

[patricia1]

Hi, Pat! I did not mean to offend anyone. Isn't this board about basing your opinion without getting vulgar? I do not remember ever getting that way. Pat darling, you are wrong about me Just tell me what is it that offended you, and I'll apologize!

having a real hard time. I love God, and I trust him. My son told me when he was diagnosed to accept it as one of God's plans, and for my son I did just that. Is it annoying you that i keep posting memories about my son, or what? I came here as a friend, and I am getting a cold shoulder. I have, in no way, gone out of the way, other than posting my opinions like everyone else. Do me a favor sweetheart, just what is it that I had posted that you disliked, and I'll apologize to you. I do not believe in going up in arms when discussing a disease that is so horrible, that is claiming the lives of so many finr folks. I am here for my son, not for myself. God bless you, sweetie. Prayers to you.


Praying for Pals,
Irma
Irma WHere in my post did I say your were offensive that I disliked your post that you w ere annoying giving you a cold shoulder and that discussing the disease was horrible . Never did I say one of those things all I said was you would get more benefit from a support group that has lost a love one. Your son would want you to get on with your life and help others going thru the loss of a child or loveone thats is all I said I was concerned about your mental state . You read me all wrong.

WhatI do find very condesending is SWEETHEART AND DARLING I am not either to you. I have ALS to deal with I have no time for your imagining something I never said. May God Help all of us in our time of need.

[vmd]

All of us suffer from this disease, both those that have it and those that have lost loved ones. I empathize with both of you and pray for both of you.

Speaking of coping with a new identity, I know the one that I fear the most is accepting my dependency on others for meeting of my needs. I know this is difficult for all of us. One of the activities that I will miss the most is going to the gym and lifting weights. While I still do this, although I know that heavy exercise is not good for my compromised muscles, the act of going to the gym is such a psychological booster, that it more than compensates for the physical damage it may cause. Of course, soon I may not be able to do this or rationalize my gym activities.

I know that annmarie and Leslie were fitness instructors. Do you ladies still exercise? If not, how did you cope with this limitation?

[ltr]

When I make it through a full day of accomplishing activities of daily living, running the kids where they need to be and actually still being able to fix some kind of dinner, I consider that to be a great day.....and a workout. I was going for walks, but stopped after my biopsy. Now I have aqua therapy 2 times a week. I feel good afterword, but the next day is hell.

[vmd]

Leslie:

I understand as I feel the same way most of the time. When you say the next day you pay, do you feel excessively fatigued or do your muscles hurt, or both?

[patricia1]

When I go swimming I am wiped out as well the next day, but my neuro said to go in the pool.All I do is stretch and kick in the water I am worring I am doing more harm then good.I am going to my florida home and I dont know if I should continue exercising,Pat

[jimercat]

Pat,

I think you probably enjoy the water! The exercise in the water should be great just for range of motion and you don't want to get frozen shoulder! Just moving around in the water should be beneficial. I think the more strenuous exercise is what people should worry about.

Maybe you can do smaller increments and pace yourself so you aren't so exhausted the next day. But hey I tell my husband the same thing about exerting himself and he doesn't listen! LOL

[patricia1]

I was told on Wedss. I have frozen shoulders and boy does that hurt. My Ot Give me range of motion exercise and I do alot of cursing that hurts lOL.Pat

[jimercat]

Pat,

Sorry about your shoulder! that was one of the first things one of the nice gals at the ALSA told my husband was to try to keep range of motion especially int he shoulders in case of frozen shoulder. Hope you can resolve the problem.

[ltr]

VMD - both. The next day I am extremely fatigued and hurt and the twitching seems to pick up too. Like Pat says, it's hard to tell if we are helping or making things worse. I know I have not been diagnosed with als, but I still wonder the same things as the pals because the symptoms mimic it. The thing about the aqua therapy is that it makes it easier for us to exercise, but because we are working against resistance we are doing a lot more than what we think. I think that's why we hurt the next day. I sometimes wonder if range of motion with someone helping would be easier on the body. I did read an article, though, and I will find the link if anyone is interested, where studies have shown that resistance exercise has been found (questionable) to be beneficial to pals. Pat, I think we like the water because we feel as if we have accomplished some type of workout!

[vmd]

Leslie:

There is that theory that hard exercise over the course of a person's life can lead to the death of motor neurons, which could explain the correlatin between athleticism and ALS. If this is true, then we could be accelerating the death of more such neurons?

[CindyM]

Pat- I just noticed your post about frozen shoulder. Ouch! that sounds painful. Is it getting any better yet? Thanks also for the heads up. Range of motion exercises are easy to do for many of us and maybe we should be more consistent while we can!:) Cindy