Another rant

[poet1973]

Three words that I hate now, " Are you ok?". I know that people are not trying to be inconsiderate, they're just genuinely concerned. However sometimes I just want to scream. Because no i'm not ok, can't do the things i used to do!! I dont want to seem ungateful, because thats not the case! I really do appreciate everthing that everone does for me. Its just infuriating that I cant do for myself. And I dont want to be a burden to anyone. Sorry for rambling just had to get it out!!!

 

[Nikki J]

It is hard. And as you say they mean well. Another thing I hate is when people at clinic say I look good. It is all relative and there are people far worse than I. I think they mean you haven’t progressed much from the last time but good is a stretch

 

[Clearwater AL]

Here’s one… “How are you doing?”

Saying “Ok” isn’t true.

Saying “Progressing” often is misunderstood with “So you’re getting better.”

Saying “Not well” leads to “What’s going on.” I just don’t feel like giving
them run down… it’s wore out for me now. Some heard it before anyway.

“Are your meds helping.” - “Honestly… I don’t know.”

“Are you getting plenty of rest?” I just tell them “Yes.” What they don’t know
if I’m not in bed I sit around here almost like a potted plant now. Plenty of
rest isn’t a problem.

“If you need any help call.” I think to myself… do you mow a huge lawn, do you
clean gutters on a three story house, do you trim hedges, stain and repair
decks, do you have insurance to do that work? Things I hire out now I
used to do without a second thought

But I’m glad for the visit when we get past “Are your meds helping.” and
talk about other things.

 

[KimT]

I'm cautious what I talk about. I've been in a wheelchair since February so people in the condo ask me what's wrong. They know I have ALS but they still ask. I am too tired to explain it. They wear me out with questions.

To make matters worse, I finally got a co-morbidity dx to explain my pain. Ehlers-Danlos Syndrome. I can't even begin to explain the constellation of symptoms that syndrome causes and I've put up with them for years. I have no idea how I worked for more than 40 years full time or how I got all my advanced degrees and played competitive sports.

Al, I also feel like a potted plant.....one that nobody bothers to water.

 

[Nikki J]

If I don’t straight out lie and say good to how are you ( I often do) I usually say hanging in there. I don’t want to worry anyone who really cares and for the people who are just being polite good will allow us to move on which is what I want to do. I don’t need to talk about it 99% of the time and would rather try to have a normal conversation like you do Al

The let us know how we can help is hard. I try to avoid taking people up on it because maybe I will really need something later on. Also for people on the offering side a specific offer is most helpful whether it is I can do errands on Tuesday or can I get anything from the grocery store when I go tomorrow

Kim I am sorry to hear about your EDS. I hope knowing why you have the symptoms will lead to some intervention to improve your QOL

 

[poet1973]

All of that is true. Sometimes when they ask is there anything i can do for you, I just want to say can you give me my arms and legs back. Lol
I dont want to tell anyone I'm a little depressed because thats a whole nother rabbit hole!!

 

[Tomswife]

Just say.
"I take things one day at a time. How are you? " Because they are often just being polite and the conversation is superficial.

One thing that the ALS journey of my husband taught me is that most people have no "awareness of other". I am sure there is a word for that. Clueless? Self Absorbed?
But there are really wonderful people out there who really want to know how you are doing. And, if you let loose a well earned rant they will listen, hug you and hold your hand.

 

[lisa g]

I have to get in with my pet peeves here. I know people mean well but some of their comments just put me over the edge.
When they say you still look good. What does that mean? How am I supposed to look?
The worst for me is when I'm told, I'm praying for you . I want to know what exactly are they praying for??? There's no cure for me or they praying that I progress quickly and escape this nightmare?

I ran into a situation a few days ago that really topped everything. My husband was pushing me in a transport chair because I was having an issue with antibiotics and was feeling weak and unbalanced. A neighbor approached us and totally ignoring me asks my husband "so how's your wife doing today"? Did she think that I was incapable of answering her? I just looked at my husband and shook my head. He knew from the look on my face that I was going to explode and it would be best to move on. He quickly answered that she takes it day by day and quickly moved on. We had a laugh about it later on. It amazes me the stigma that people have towards you when they see you sitting in a wheelchair.

 

[Tomswife]

I am praying for you. I pray your emotional distress will be eased. I pray that you have someone who loves you. I pray you have competent caregivers who are not annoying the shxt out of you. I pray that your Healthcare providers understand your condition and this monster ALS illness. I pray that someone or something makes you laugh sometimes. I pray you have people who care about you and know just the right things to do and say. I pray that you have hope in just today and tomorrow that you will encounter some goodness. I pray your physical pain and discomfort will be eased. I pray you have something interesting to focus on, be it music or entertainment or games or conversation. I pray that you are not afraid.

There are more prayers. These are just a few.
Amen.

 

[beckerde]

Lots of rants and I get it. I am not an expert on anything at all. But I believe many folks just don't know how to communicate with others who are in a bad way. Whether it be a funeral or maybe visiting a friend or relative who is sick or near death. They just don't want to deal with an uncomfortable situation. Well, get over yourself and go visit the sick. Sick people are human beings not aliens, they have feelings. Speak to someone in a wheelchair I'm sure they haven't lost their hearing.
Now I am ranting.
Have a blessed holiday.
Don