Alone in a crowd

[tabney]

I need all of you. I feel very alone. I have reached out to so many of my friends and received very little response. My family is concerned but they don't call me to see how I am doing. They call each other. I post things to cheer people up but, truth be told, it is really to cheer myself up. It is sad to me to know that in a time of true need, most of my friends are no where to be found. I can no longer ignore what is inside of my heart. I feel very alone...even in a crowd!:cry:

[CindyM]

Toni- it is sad to feel this way. We all do from time to time, I suspect. Hoepfully it will pass soon. If you feel this way very often, or for longer than a day or so, you might consider telling your doctor. He can prescribe something to lighten your mood.

Keep in mind you have a lot going on right now and it is easy to feel alone and vulnerable. Are you eating right and getting lots of rest? You need to take extra care of yourself during these stressful times.

Why not go out and do something just for you today? Get your nails done, buy that book or CD you've been meaning to, anything that will help you remind yourself that you are a lovely and lovable person.

Maybe you could call one of those friends or family members to go along. You deserve support even if you have to ask for it! Write back and tell us how it went! Cindy

[vmd]

Toni:

Like you, I feel different from others around me. They are not dealing with a life-threatening illness and perhaps do not know what to say or how to comfort someone who is. On the other hand, the fact that they are there to listen may be enough.

[Mike27]

I think that some don't phone because they don't know what to say. I haven't heard from MANY of the people that I used to, I put it down to that reason.

You're apart of whole community here, though!!:-D
If you just wanna chitchat...

I see in your profile that you're a movie buff. What kind? I like pretty much anything short of looonnngg dry documentaries.

Cheers!

[lunarruna]

ALS definitely scares the shit out of people---they react in weird ways for sure. Many just feel they dont know what to say and that it is just too awful--they cut off......well, in the meantime the PALS are living it out and so often have that isolated feeling. we've seen it all....early on at my husband's family gatherings no one would mention a THING about the ALS..it was the big elephant in the room. After the gathering he would be so down. The thing that really bugs me is the other type of people that visit and COMPLAIN about all the woes they have...."Oh I cant retire for 15 years.." Oh I hate my job, blah blah"...meanwhile Shannon is sitting there thinking he wishes he could hold his head , or swallow maybe. ARGGHHHH...
anyway....
Movies are great...we get Netflix and that sworks out great because Shannon can shop in there and pickout flicks.
Latest best pick: The World's Fastest Indian...Anthony Hopkins, based on a true story about an older guy setting the landspeed record on an Indian motorcycle.
Plus we go through the HBO series...Deadwood was really good...now we moving in to season 2 of The Wire. Can get these through Netflix too.
Netflix is a great gift for PALS! Ask for it!
Later, Beth and Shannon (tonight we are watching "Heat" with DeNiro and Pacino)

[Frizzel]

I felt sad when I heard you say you felt alone in a crowd. I was also relieved because you took the time to say how you REALLY felt. Because I no longer drive and we live in the country I can also feel alone.

So, I invite people over for an hour or two just to watch a TV show, movie or play board games. I'm a person who would have gone anywhere any time and now I can't get anywhere without someone coming to pick me and my chair up.

I'm learning to bring my chair which helps people feel more comfortable since I can move faster. I guess I'm having to teach others that I'm still who I always have been, we just need to change the 'play' field so we can still get together, only in different ways.

Let people care Toni....and we do....Frizzel

[tabney]

Thanks to all of you for replying. However, I am saddened to know that all of you have dealt with isolation from friends. I am sad because we all need our friends. I don't want to talk about my illness with my friends. I want to go out to dinner, laugh, talk about silly issues, live. I don't know.....I just miss them. Toni

[CindyM]

Toni-we have to set the tone, I think. People take their cues from us. People fear a dibilitating disease and cope with it in a variety of ways. Some will distance themselves and others will "hover" but if you act natural they'll adjust, don't you think? Cindy

[alspatient]

Hi Tabney,
I felt misrable when the circle of friends started shrinking for me. So I started making new friends beyond the real world. One reason why I stayed away from this forum was that I was scared to be told about the problems that PALS face. THen it dawned on me that it is escapism. I signed as a member today though I knew what I have seven years back.
Now I realise the importance of visiting sick people. If I could get well again I would do a lot of comforting people like me. But that will not happen. So I look at the successful career I had and recall the number of people I helped. They don't exist for me at my need of hour. They will not even send me the courtesy of sending me a mail on my birthday.
But there are people who look at me and have shed ters and cruied or gone away and cried to my wife. Grown up men have cried looking at me. They make up for all the neglect I get. There is some goodness left in men. learn to scale down your expectations from others. Expect nothing and then treat what you get as a bonus.

[Frizzel]

Whew! That was a powerful e-mail you just shared with us!! Thank you for joining with the strength of this forum.

[Omar]

Hey Toni, hey guys

Yes indeed we are alone in the crowd, sometimes I even feel that I am more close to the pets I am living with than to people. I have been depressed toni for a long time and was spending my time in my room, now I am taking cypralex and xanax and I am pretty much happy and optimist, I am even going out, but still it hurts when deep inside i know that I can't date anymore but still we can enjoy lots of other stuff in life. Like sitting in the sun wow I love it,
and ofcourse visiting this forum where I feel again alive in a crowd.

Omar

[liz]

Omar -

Who said you can't date anymore? There's folks here that have gotten married after their diagnosis. Don't count yourself out yet.

Liz

[vmd]

Dating and marriage after a diagnosis? Wow! Yes, hope is a very powerful weapon against this disease.

[Paty]

I know how you feel, although I am not the PAL but the CAL to my husband I too feel isolated, his so called "FRIENDS" only two that live away have come to visit (they are childhood friends) one from their 5th. yr. the other High School friends.

Even his sister's wouldn't visit, only his older half-brother, his mother and of course our children and grand-son when they are off work.

I WANT TO LET YOU KNOW THAT WE ARE ALL HERE FOR YOU, TO HEAR WHATEVER YOU ARE FEELING, AND DO AS OUR FRIENDS TELL YOU, GO OUT DO THINGS FOR YOURSELF.

HERE'S MY E.MAIL WHENEVER YOU FEEL LIKE WRITING ME: paty_gilso@yahoo.com

BY THE WAY THE BROWNIES CAME OUT SCRUMPTIOUS GOOD, POOR LITTLE FAT DUDE HE ENDED IN MY OVEN.

WITH LOVE

PATY
HUSBAND'S CAREGIVER DX10/17/05
BAJA CALIFORNIA, MEXICO

[liz]

Omar, vmd -

Don't rule out having kids either. I know it's hard to think about the future when you have this disease, but try not to limit yourselves. PALS have done it before and will do it again. Now get out there and breed, you crazy kids!

Liz

(PS - did I really say that?)

[Omar]

Haha Liz,

it so funny but also very true, Tnx for such a cute and funny reply

Omar ;)

[vmd]

Interesting discussion. There is a woman I have known for a couple of years. I decided to confide in her about my potential illness, but did not specifically mention ALS. To my surprise, she said she would take care of me if I ever became disabled! I thanked her, but I also wondered what would happen if I decided to pursue the relationship. In particular, I am mindful that I will change physically and that she may find this difficult to accept. I know that it could be more my problem than hers, as I'm probably too proud to allow someone else to see me degenerate physically in front of their eyes.

[nspoc]

Hi VMD - Please don't hold back - if that person said she would care for you - believe her. She sounds like she cares for you a lot - give her the chance she asks for.

I (and my husband) took in our best friend. She moved to Chicago from California and has lived with us for 2 1/2 years. She believed us, trusted us, and now we are a wonderful small family.

While she cannot even turn over, she can still feed herself, and talks normally. We spend our days talking, sharing, and living. I love having her here.

Yes, there is a lot of physical care, but so far I can do it with the assistance of overhead lifts.

She makes my life richer, and I am better with her here. I feel my world has expanded.

This disease is terrible. If someone cares enough to share their life with you - don't say no. Don't be the one to close the door.

After thse few years I can say I would do it again - in fact I can not imagine a different life.

And Omar - go for it. Stephen Heywood married his wife after his diagnosis. Look up the movie "So Much, So Fast" about his situation and the research foundation his brother started.

Also - A guy in our support group had a child 4 years after his diagnosis.

Now is the time to live your dreams.

Quadbliss and so many others keep telling us to live with the disease, take them up on it.

People out there do care - just look at this forum!

Sorry for the long post - but you really you guys really touched me - and I wanted you to know that there are people who can handle this because they love you.

Beth

[CindyM]

Good advice, Beth. Thanks, cindy

[alspatient]

I have copied and pasted an email I sent to my best friend and my beer drinking mate for over 25 years. The mail is to his wife. I tried to pretend as if I am okay when I made that post about how everyone should be cheerful in the thread started by me. But the fact is that I miss people and I am also feeling lonely.
Now the email.

Hi, xxxxxxx,
How are you all? I am feeling lonely. An occassional email from friends like you will cheer me and make me happy. I can't openly tell others that I feel neglected but you and xxxxx. Please let me know how you are doing. I have nothing to say because I am cut out from all the events.
Please do write occassionally at least.



I did not get a reply. Help me and tell me how to cope with a situation like this. I did not ask them to donate money or even come and visit me. All that I wanted was one email and my best friend will not even give me that. How does one cope?

[shellshell]

Hi alspatient,

I am so very sorry you are having a difficult time. My dad was recently diagnosed at the age of 58 and I actually find this forum more comforting than even talking to my friends because you all understand what is going on and we can bounce things off of one another.

Please know that you have a wonderful group of friends right here ready and waiting on you when you are ready.

I hope things get better for you soon...We are all here to help you thru this...

Michelle

[vmd]

Beth:

It's a difficult situation. The caregiver does not really know the challenges involved in taking care of a person who becomes increasingly unable to perform daily activities. She may be thinking only of her affection for me and not the day to day life with a disabled individual. Your attitude is very loving one and your friend is blessed to have you and your husband there for her.

alspatient:

I have the same fears you have, especially as I live alone. I intend to seek out a local support group for ALS patients in order to satisfy some of my social needs. Is there such an option for you?

[alspatient]

alspatient:

I have the same fears you have, especially as I live alone. I intend to seek out a local support group for ALS patients in order to satisfy some of my social needs. Is there such an option for you?

I don 't know of any other ALS patients who know that they have it. The general awareness about diseases and that too about such rare diseases is bot very prevelant here. I live with my mother and a helper who stays with me for 24 hours. I have no social life at all. I generally live in a room. I have had this for nine years now. So I am in an advanced stage.
My brother who I thought would take care of my farming cheated me with false progress reports. He spent all the money I gave him on booze. He took advantage of my immobility. When I realised that and confronted him he deserted me. I had taken up farming because I wanted a hobby. When I sent him to the ATM to draw money he came back and said that his purse was stolen. I am losing faith in people.
Imagine a sibling taking advantage of the serious sickness of a person who trusted him implicitly.
Now I do it with a manager who is running the farm well. In India traditional paper cash is still the most popular form of payments. I have to keep cash for medical emergencies. That scares me.
I get into long spells of deep sorrow and rejection syndrome. I am losing the battle to insanity.
Since yesterday I have had atleast some messages from people which was never there. Thanks everyone.

[sufernan]

I think a lot of people feel very lonely in our society. ALS isolates people even more when it creates barriers to communicate or to move. Most people are ignorant of how someone else feels. Tell your friends how they are making you feel when they do not call or do not visit you. It is true that you should not have expectations, but you will feel better when you let out how you feel.
In addition I have to say that my husband and I married after dx and we had a son. ALS does not stop real love - nothing does! ALS will take your body but it cannot touch you hear and your spirit if you do not let it.
There are so many beautiful hearts here that I do believe only the best people in the world are touched by ALS.
Thank you for being here!
Sunny

[tabney]

I think the old saying that you find out who your true friends are when you are in your deepest need is true. It is unfortunate that so many of us are in the same boat with the loneliness. I am going to take the advice of many of you and form new friendships. It is a sad conclusion to come to but necessary to maintain ones sanity. I cannot give this issue any more of my energy. I have other more important issues to address. Thanks to all of you for replying and your advice. Toni

[vmd]

Is the change in appearance of your body a concern for some of you? I know this is vanity on my part, but one reason why I would find it difficult to pursue a relationship in my current physical state is because my body will become thinner through atrophy (it's apparently already taking place). I always lifted weights and had built some muscle weight before all of this started.

How do I manage to change this attitude and become open to the friendship of others? It seems as though the only people that will truly understand are other ALS patients.

[nspoc]

Hi VMD -

I can really see that you are mourning the loss of your body as it used to be. With this horrible illness there is always something very real to seize your thoughts and feelings.
I think Quadbliss has so much to offer about retraining your thinking.

Even though I am not the PALS, I have seen my friend concerned about the same thing. Over time she has taught me about living every day, just confronting her fears and deciding to live anyway.

Practically speaking - I do not even know too many women who crave muscle-bound men. You are not your body, you are you - your personality, insights, gifts and ability to love another.

I am really glad you are bringing up these thoughts - they are so real. But I think they haunt you. I wish I could help you look through some else's eyes at you. You would see something much more important than your muscular past.

Work as hard as you can (maybe even with an ALS social worker) to work through this mourning, There is still life to live.

If my friend withdrew in mourning, I would understand - but I would be heartsick. I love our life together and cherish every minute. She is a real support to me. I know you can be that to someone else.

Look at Al and Cindy and Liz, and so many others that have a personality that just draws us to them. You can be that person, also.

We will all die someday - and ALS is a tragedy. But live the life you have with courage - at least let this woman have a chance. Maybe her life is better with you in it, even this way, than without you. I know that my life is better with Pat. Let this woman have a chance to decide - don't decide for her. Gradually let her in - you might be surprised.

My impression is that you don't seem like the burdensome type - I think there is a real chance here!

Good luck! Beth

[vmd]

Beth:

I am sure I overstated the appearance of my (muscular) body!:oops:

:-D

[Frizzel]

I agree with you Beth. My husband and I have a long standing joke between us since I am also a cancer survivor. He used to say he was a leg man and now he says "I'm an eye man myself." I'm laughing even thinking of that.

So VMD as Beth shared, "Let the woman decide for herself." You may want to meet with an ALS social worker together. What do you think?

ALSpatient....
Have you ever thought of giving yourself a cooler name than ALSpatient. I'll be there more to you than just ALS.

Even as far away as India...can you hear us cheering you on? I hope so!!!

Frizzel

[Omar]

Hey Guys,

It is really funny how lonely and different I feel when I go out in real life and how comfortable I feel in that forum. What about an ALS village in which we can all live, meet, and even date ;)
then we can even have our own GYM Vmd with a huge swimming pool
we just need some supportive politicians

Omar

[vmd]

Beth, Frizzel:

I wish I had the physical energy to invest in a relationship, but I don't think I have. Nice to think that life still has opportunities to offer, however.

Omar:

I like the idea of a gym for ALS patients only!

[CindyM]

No. No! we decided on another thread that it will be a world-class hotel in the tropics with all expenses paid by some huge philanthropist. :-P Cindy

[Omar]

Wow, we would have lots of fun, maybe it would even be the cure for us Cindy, relaxing in the sun. So yes we wont only have an ALS Gym Vmd but also lots of more private facilities ;)

Omar

[Frizzel]

ALS forum site friends looking for someone who would send us all expenses paid to a resort for a week so we can relax, talk, meet and gain some ground in how to make a difference in the reasearch aspects of these MND's. If you are interest please notify moderators of this forum and if you would give 2 months notice so we can take time off work it would be much appreciated. Thank you!

HEY it's worth a try!!! Thanks whoever you are!!!

By the way, my name is pronownced..Fre zzzell. It's been my play name my whole life. Trying to keep a little fun in my life. ha ha!

[CindyM]

Hey Frizzel - Some of us need more than a week. Do you think our wealthy new sugar daddy will pay for two? Cindy

[Al]

Just tell me when to be at the airport.
AL.