Isolation

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Lobster

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PALS
Diagnosis
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US
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Virginia
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Near DC
It is like being in prison. In solitary. But the amenities are better -- higher thread count, better soap, and the expensive toilet paper and bidet.

My friends are getting together today.

I cried in front of them last week and I thought, they will never want to see me again.

I found out about them getting together today by accident. I wasn't invited.

I feel like the ugly kid all over again. Who can blame them for feeling uncomfortable when I feel uncomfortable? I hate ALS. I can't deal with it. Why should they?

With EL, I can't even talk to them about it. I will start blubbering.

:oops:
 

tomby

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this disease sucks. maybe your friends are talking about how they might help you. I'd like to think so anyway.
 

abbas child

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Feb 29, 2008
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Maryland
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Lobster, I'm with Tom, hoping they are brainstorming ways to help you. If not, assume the best--they just don't know how to handle the EL... If you haven't already done so, send them a link of your choosing to explain it. I sent ALS info to forums I no longer participate in, and got lots of cards, emails and messages of love in return.

I had to explain more than once to family and friends what ALS is and isn't. My friends ran the gamut in immediately or later pitching in to help. As word spreads, even at this late date, I get offers of help or questions about whether folks can visit. Please give it time, and do reach out to your friends, hoping they just need encouragement.
Ann xoxo
 

Lobster

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Messages
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Diagnosis
01/2007
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Virginia
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this disease sucks. maybe your friends are talking about how they might help you. I'd like to think so anyway.
Thanks Tom, thanks Ann. You are both sweet.

They are getting together with a mutual friend who lives in another country and is visiting.

It's not them. It is the disease. It sucks. I don't like being around ALS but I can't get rid of it. ALS and "happy hour" don't go together.

I am going to put on the radio and think about something else. Anything. Else.

I appreciate the support here.
 

HelenL

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Dec 17, 2010
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Hi Lobster, I'm also hoping that they're just trying to figure out what to do... I also feel myself tearing up at very annoying times, when I totally think I have everything under control, boom! It really sucks, and I just have to let it go. Are you on any meds that will help you regulate your emotions?

Hardest thing I had to do was tell my kids, I waited more than a year before I told my sons who are now 12 and 14... funny thing is, after more than a year, I was less afraid of the progression of my particular form of this disease than I was earlier on. And I told them that if they look online about it, not to believe everything they read, and to come to me with questions. I agree with Ann, that maybe if you send them some info on what you're going through, it may help them. I did that when my older son was diagnosed about 10 years ago with Asperger's Syndrome, as people would think he was just being a brat, when it was something out of his control.

Sending you a hug, and give your friends some time to deal with it, and hopefully, they won't waste too much time!
Helen
 

Ladyinn

Distinguished member
Joined
Apr 7, 2010
Messages
398
Reason
PALS
Diagnosis
11/2009
Country
US
State
South Dakota
City
Custer
I agree, this disease sucks! It also makes you feel invisible at times. For some reason when you are disabled people begin to treat you differently even though you are the same person.

Just last week I experienced the isolation that came when I transferred to using my power chair full-time. I felt like everybody raced around me, busily doing their thing and ignoring me sitting in the middle of the room. I cried a lot. And then, I posted on this forum, and got so many words of encouragement from my friends here, I decided that crying was a good thing and that we all do it at one time or another.

I also discovered that the people who really want to help are not frightened by my behavior or my wheelchair. It just takes time for them to adjust to seeing me less active than I have been in the previous years. Right now there is a group of ladies, called the Custer breakfast club, that was started after my husband passed away as a way to keep me involved in the community. Those ladies have called and ask if they could have a breakfast club meeting at my house so that I can be a part of the group. It has taken a year and a half before they realized how they could help.

Perhaps your friends just need some time and some education. My friends didn't realize how they had isolated me just because they weren't sure how to interact with me. I've told them how special they are to me and how I have missed them. This time, instead of me crying, they cried and asked me to forgive their absence. Who knows, your friends may be meeting to educate themselves and figure out the best way to help you. I hope so.

Hugs from a virtual friend who understands isolation.... :)
 

michael0314

Distinguished member
Joined
Jan 22, 2011
Messages
204
Reason
PALS
Diagnosis
01/2011
Country
US
State
Ks
City
.
Maybe I'm wrong but maybe some of this is in your head. How would you have handled it if you were healthy and they ommitted you from a gathering? That's how you should handle this, call and invite yourself if you want to go. and then be your old self, you have not changed just your physical abilities. If you live in deaths shadow, you'll always be in the dark.
No its not comfortable to be around a disabled person but it is worse, when he/she is the worst one around. I refuse to let anyone treat me diffrent. I am a jokestere, I know many of you are thinking not me, I laugh and have fun and tell peolple hey if your going to let me get away with it I'm going to do it even more. Its hard to be a smart... when you can't talk but me and my Ipad are learning how timing is a big part of funny and adapting. You want to see something funny, watch me laugh histerically while feverishly typing something out to say. If your the old guy they used to like to be around, just now with a little more baggage, they'll see you that way.
I may be way off base, if i am I appologize now before I say it.

ps. I'm not saying there is anything wrong with showing emotion to them just dont let that define you. There is a drug called nuedexta for EL if you feel like it's out of control. I take it and it really does seem to work.
 

cukita99

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Joined
Jun 12, 2007
Messages
361
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PALS
Country
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State
tx
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el paso
my friends are more involve n visit me more then my own family. my family have gathering n leave me out. ``
 

susanf

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Joined
May 26, 2011
Messages
647
Reason
PALS
Diagnosis
06/2011
Country
US
State
fl
City
Palm Harbor
It's tough with the EL. Meds will help. I have said this before, this disease will weed out who is a friend and who is not. You can hang with us. We're all far from each other but care for each other.
I tear up all the time. It's emotional whether one has EL or not.
Sending hugs, love and friendship,
Susan
 
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