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rcharlton

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Joined
Jun 20, 2005
Messages
610
Reason
PALS
Diagnosis
11/2005
Country
CA
State
Ontario
City
Toronto
Maintaining a foothold in the "real world"

So it's been over a year since I first noticed my symptoms and about 8 months since my first opinion and diagnosed.

All things considered - I feel really good - in a lot of ways I've never felt better.

I'm still working full time with little trouble. Getting married in August. Just adopted our third beagle from a rescue agency in Newfoundland (big hunting community in NFLD - at the end of the season most beagles are either killed or abondoned).

When I'm at home and at work - I often forget that I have ALS - or at least I am not forced to think about it. I have supplies of safe food and supplements at home and at work - stuff I don't need to worry about eating. People at work know about my ALS so it's not a big deal. My home, and to some extent my office, are safe zones.

But when I go out - it's as if my ALS is always getting in my face - and there are constant reminders.

When I meet up with friends:

For those of my friends who know that I have ALS - I always get the dreaded knowing - "So how are you?" express with the deepest sympathy - often with some body contact - I usually just try and give a flippant "Fine" - but part of me is forced to take stock even if I don't say anything - "Well actually there has been some noticeable progression of late and I'm finding that I can't do certain little things - manual can opener, button on my pants (of course it doesn't help that I've gained 14 lbs), buttons, dials, keys zip locs etc....just noticed obvious muscle wasting and atrophying in my right shoulder which didn't seem to be there last week, I've got increased slurring, drooling and choking...etc..." - I mean - nobody really wants to hear that...

For those of my friends whom I haven't seen for a while and don't know that I have ALS - I always struggle with "Do I tell them or not?" If I tell them - then I have to watch their reaction which really freaks me out and forces me to think "this is some really heavy stuff" - if I don't tell them - I feel like I'm lying and have trouble updating them on my life while leaving out the ALS....

Even a simple invitation for lunch or dinner causes me stress "Where are we going? What is their menu like? Do they serve natural foods? I'm I just wasting my time worrying about my diet anyway?"

And even when I feel comfortable going out - I have trouble relating to my friends anymore as their biggest concerns in life seem to be finding a good daycare for their kids, losing their beer bellies, buying a new car, cutting down on home expenses...I just become really distant...

Even when I go to the movies with the guys - we often sit up front - near the handicap seats - and I start picturing the not too distant future where my friends may need to wheel me in to watch the movie. And even the movie itself - if its a drama - often involves the characters trying to deal with their hum drum existence - and I start thinking about how the issues these characters are facing are nothing compared to what the average PALS has to deal with on a daily basis - so just snap out of it you whiny hollywood babies...

Since my diagnosis - I've never experienced any bitterness or anger - I have no trouble staying positive - my work is good - I love my life at home - I'm just starting to feel less inclined to go out into the "real world" - I feel like I am forcing myself to do it just to maintain my contacts with my friends when all I really want to do is stay home with my fiance and three dogs....

I've always been a bit of a homebody - even though I'm very sociable and have kept in touch with every friend I've ever made throughout my life...I've never been in to going out to bars or big parties - it was always an effort to go out - but I did it to keep up with my friends...

Now part of me thinks I should just focus on what makes me happy and less stressed - and that my true friends will understand - even though some are starting to grumble and giving me guilt for never meeting up - while part of me thinks I should just suck it up and continue to make the effort to maintain the friendships while its still pretty easy for me to get around - even if I'd rather be at home...

I'm sure most you PALS have gone through the same thing - how did you handle it?

Thanks
 
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upila

Active member
Joined
May 1, 2005
Messages
77
Hi,
Your writing flows, it illustrates and it makes you change places with the writer.
Wish you'd keep on writing!
====================================

A comfortable home, someone you care about, having wonderful pets whose life you have saved and given them a chance to love and be loved! - I would say, you have the core of what should be most treasured. It is so unnecesary to burden yourself with worrying about all these matters you mention when speaking of many friends, meetings, "small chat" encounters...

I think, in your heart, you know the answer to your questions.

Take care!
 

ladave

Distinguished member
Joined
Feb 12, 2006
Messages
136
I really relate to what you've written here. This past weekend I took a trip-watched people in the airport struggling with the ordinary annoyances of travel. Oh, how I wished I could trade places with them and just be "normal" again! Sometimes I just want to stay in bed.
 

Carol Deboer

Distinguished member
Joined
May 7, 2003
Messages
343
Hi Richard,

You sound like you are doing just fine. I am impressed with your attitude and positive spirit. It is good to keep active and maintain your friendships. It is difficult at times, not knowing what to say to people who seem overly concerned about your well being. Just remember, they care. And for all intent and purpose, really do not know what the heck to say. I always said I was going to write a book about our experiences with als, and title it, Don't say your sorry! I always hated that, when someone Henry had not seen in a while was told that he had als said that to us. I know there are a few catch phrases that would be better, what are they? Heck if I know, but know I can say I know what they are going through, which really isn't all that great for me, but, less words are sometimes better. Keep social, keep active and remember that your attitude will see you through. Glad to hear that your doing fine. Keep the faith.

Stay Strong, Carol
 

TBear

Distinguished member
Joined
Nov 4, 2003
Messages
430
Country
CA
State
ON
City
Uxpatch
Hi Richard:
I agree with Carol, that you should try to maintain your social life... but I also believe that you should be able to do it on your own terms. Your friends should be able to accept that. Your attitude has always been exceptional and you are entitled to a modicom (like that word?) of negativity. Don't let it rule your world... I know you won't. Just accept that it won't say forever.
CHeers

T.
 

rcharlton

Moderator emeritus
Joined
Jun 20, 2005
Messages
610
Reason
PALS
Diagnosis
11/2005
Country
CA
State
Ontario
City
Toronto
Re: Maintaining a foothold in the "real world"

Thanks everyone.

It is great to have a place where people can relate to exactly what I am going through.

I think a lot of this has to do with the February blahs. I'm sure when the weather gets nicer, I'll want to be out and about more - with the birds and the sun.

BTW - how do I fix a typo on the subject for my thread - it's bugging me.
 
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