Frustated with Excuses (Venting!)

[Chewy302]

Hi Chewy,

You're certainly not alone in feeling this way. I could probably have written this myself a few years ago before I had had much experience being a CALS and was trying to wrap my head around the changes in my PALS.

What jumped out at me in your post was 2 visits in the same day. All I could think was probably not going to happen. The fluctuating energy levels are hard to understand at first. You and your BF are still in the early stages of figuring out everything, what life post diagnosis is going to be like.

You've been with him for a few years so you'll know best whether this is him being him or something new. If he was already depressed, that to has an affect on energy levels.

I doubt you'll find many CALS who don't get frustrated from time to time for a variety of reasons. Feel free to vent away any time you need.

Paul

Thank you so much for understanding my need to vent I try not to upset him with my feelings very often because I know he feels guilty about not being about to do things the way he used to. He spent all day today with his dad doing lawn work, so I know he is VERY tired tonight.

 

[affected]

Thanks for all the responses, as you can see we will help and support you however we can.

You are going to need to start planning and NOW.

Either you will have to live with him or his parents will, and now is the time to get decisions made. He will not be able to live alone at some point and things can change suddenly. Maybe read the sticky on anticipatory planning.

Breathing takes an enormous amount of energy for PALS. His speech is slurring, so I can tell you that sitting and talking with people will take even more.

It's great that you have a science background as it may help you to learn fast about ALS and what is going to be needed. However, that never quite prepares us for the emotional side of the impacts of it all.

 

[Firefighter58]

I would say drop him and run, he seams to me to be a user, and that will only get worse. I'm sure we all know someone like that.
Al

 

[affected]

wow firefighter that is harsh none of us know him at all