rcharlton
Moderator emeritus
- Joined
- Jun 20, 2005
- Messages
- 641
- 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
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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