you know what bugs me?

[MarieLaure]

Ah yes, dealing with stupid people. Try looking at it this way:

Let's say, for arguments sake, that the average IQ for humans is 100. That means that half of the people you meet every day have a 2 digit IQ, and not all of them will start with 9.

So when I run into people acting stupidly, I just think to myself "Oh, they're a 2 digiter."

Somehow it seems to take the edge off.

But they still hurt

 

[KarenNWendyn]

... Getting an email or other communication from someone I either don’t know, don’t want to know, barely know, or haven’t seen in years, that starts off, “I hope this finds you well.” Sometimes they are salespeople and usually want something from me.

No I am not well and I don’t have the energy or desire to explain my situation especially if I don’t really know them.

Two years ago I received a holiday card from an old high school buddy of mine that said something like “I hope this finds you well”. I sent him a card in return that said “I have ALS”. I never heard back nor did I get a card the following Christmas. Maybe he assumed I was dead.

Then there’s the expression, “Things happen for a reason”. I heard that line in a movie recently. I used to be ambivalent about that expression but mostly didn’t buy into it. Now it makes me feel angry and cheated.

Ok. End of rant.

 

[KimT]

Today was my 64th birthday. I didn't hear from ANY of my relatives nor did I receive a card. However, I did receive some Facebook personal messages from people who know I have ALS. They said things like, "I hope this next year is filled with fun and that you have a long and healthy life." OK.....how the F#$k to you reply to that?

 

[KarenNWendyn]

OK.....how the F#$k to you reply to that?

You don’t.

Happy birthday, Kim.

 

[Jrzygrl]

Happy Birthday Kim! I'm sorry people don't understand. I think sometimes they honestly don't know what to say. Others are just plain stupid. I've noticed that I've shut myself off from most people lately. It has helped for now.

Karen - ditto on the "Everything happens for a reason". People seem to throw it around so blithely. So what, dear people, is the reason for this relentlessly cruel disease my husband has?

 

[affected]

People believe that everything happens for a reason when they haven't been through something like this.

2 from me:
Everything happens for a reason - that's why I met Chris, so that I could look after him. YUP I got that more than once!

A salesman (S) phoned on my mobile more than 6 months after Chris died.
S - "May I speak to Chris?"
"Oh, not just now, may I take a message?"
S - "Oh yes, I'm from the insurance section of your bank, and have been trying to follow up with him for some time regarding Life Insurance."
"Oh, well I'm afraid he died."
S - pause ... "Would you be interested in Life Insurance?"

A few not very nice words and a firm click as I hung up.

Kim, I get it that you don't want gifts from the family, just to feel like they give a damn. I am sorry they are like this. I hope you treated yourself to something you really wanted - I find I get myself the best gifts anyway

 

[ReginaS]

Kim, happy birthday. I am grateful you are here and that we all get to read your posts. Really.

I don't get some people either. The stuff that I hear some days.....when people ask how I am doing - now that my pALS has died. Most mean well.
I've never liked that sentence 'it all happens for a reason.' Seems cruel to me.
A dear friend of mine died yesterday of a massive stroke. Again, it puts a sudden end to a relationship that I imagined would go on for a while. We had plans... Now it's my turn to hopefully be sensitive to friends who are hurting just as much and more than I do about this new death.

What I really like about this group of people here (=this forum) is the honesty, openness, humor and care - no BS. Glad you all are here.

 

[KateEmerson]

Happy Birthday Kim !!

 

[Doglady]

Hope your Birthday was special in a very meaningful way for you, Kim! Thanks for being here and sharing all your wisdom and help.

What bugs me? People who think if I exercise more I’ll get stronger.

 

[lisa g]

Kim,
I know the feeling, yesterday was my birthday and I heard the same crap.
First, Happy Birthday to you enjoy today!
I did have well wishers that just didn't go there so I was grateful for that.
I did have one text come in saying I hope your day is going great and that hoping your next birthday is healthier and stronger. seriously??? First of all my day was not going great I spent it putting up hurricane panels for a major hurricane and second I don't think next year is going to be a healthier year. At least I spent the evening with my family for dinner no pretending there they all know what's going on and are very supportive. We did get scolded by my son in law for not calling him to prepare the house for the storm.
My feeling, just let ignorance roll of your back, the time you spend now is just to precious.

 

[KimT]

Happy Birthday, Lisa.

Katrina, You nailed it. I'm really not as tough as I sound and it hurts me deeply when the people I've lavished with love, money and gifts for years now ignore me. All I really want is an occasional call and to know they care. What really troubles me is that I have quite a few medical people (doctors, PTs, NPs, PAs) who are nieces and nephews. They have all been to my house when I was well and I took all of them to Disney, Sea World, and they stayed with me for weeks at a time during the Summer. This went on right up to the year I was diagnosed. Then nothing.

DL, I can't tell you how many people tell me if I started walking again, I'd gain strength. When I was first diagnosed and was still walking a couple of miles each day, I went to PT to learn how to do range-of-motion in a way I wouldn't overdo. I called two weeks in advance and saw a PT I had gone to after my car accident so she knew my limitations and strengths. I told her I was dx with ALS and wanted to make sure she knew about the disease before my evaluation. She said she'd read up on it. When I got there, after her evaluation, she wanted to start me on strength training. Needless to say, I found some ROM exercises on YouTube and developed my own plan.

Fortunately, last year I found another PT who did get it and was willing to let me teach her what she didn't know. She really helped me with my knee issue.

I played cards with my friends last night. We four women are all around the same age and we have a good time together.

When I first woke up, there were some cards and balloons on my door. A 95-year old man who comes to game night made me another hand-made card telling me he and his wife loved me and I was a blessing to them. That card made my day.

 

[nona]

Happy birthday, Lisa and Kim, and I'm sorry for your loss, Regina. Some days it feels like the hits keep coming. You are all gifts!

Yesterday my father was adjusting my water contraption. When I told him it was hard to reach, he said " it's probably good for you to strain." WTF?

 

[KarenNWendyn]

I’ve had some people ask me (quite innocently) if it’s possible to build my muscles back up through exercise. I view it as a teaching opportunity. Generally I’ve been pretty lucky (so far) in dodging stupid, inadvertently cruel, or snarky comments.
What I can’t believe (from reading here) are stupid comments or questions coming from medical personnel who should know better— including PTs, nurses, etc.

 

[affected]

One of Chris's friend showed up one day with a bottle of Vit B tablets for him ... These are good for the nervous system he pronounced.
Since it is stressful being a CALS I took them all

At least he meant well, better than the friends we never heard from again.

I still feel like this is my family!

 

[KimT]

Fred and I just went to City Hall for some sandbags. We got extras for some of the residents who are physically unable to carry them.

Somehow, one of my friends (who was in the medical profession) and I started talking about my medical equipment and I told her I was taking it up to a unit on the second floor. She said, "hopefully, you'll never progress enough to use that Trilogy." She's a very nice person so I held my tongue. I wanted to say, "yes, perhaps I'll just die in my sleep." I really understand people meaning well and I want to keep the new friends I've made but I'm just so worn out from having to explain or just shut up about these things.