Old 03-19-2017, 07:26 PM #1 (permalink)
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Default Frustated with Excuses (Venting!)

Hello everyone,

I posted awhile ago, but I need to know that I am not the only one feeling like my ALS boyfriend uses his diagnosis as an excuse to not be involved in activities. And please let me explain before anyone thinks I am being selfish. We were together for several years before his diagnosis and he constantly complained about feeling this way or that way. He always talks of great plans but has very little follow though. Constantly taking different "miracle" vitamins that made his feel wonderful until he forgot to take them anymore. He has cabinets, drawers, boxes, etc, of multiple types of supplements that have been expired for several years during all of his experiments to find something that . In other words, I think he was already a hypochondriac/depressed and now we have ALS. He hardly eats anything except pizza, burgers, fries, and coffee. It is a small miracle if he even drinks an instant breakfast. This weekend he is convinced a different roast of coffee has upset his stomach. It is one thing after another, and I get so tired of hearing about all the research he puts into finding his next miracle vitamin.

Tonight, I invited him to my house for a short visit because my son is going on a trip out of state for spring break and thought he would like to see him before he leaves. I know for a fact he hasn't done anything terribly strenuous all weekend so didn't think it would be a very big deal. He had a visit with his dad today (at boyfriend's house) and says he is exhausted and probably won't see my son before he leaves. He only lives 7 minutes from me, so forgive me if I can't understand why it is so hard for him to come here, but he can go to Walmart and search for vitamins and buy food he is going to waste
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Old 03-19-2017, 09:43 PM #2 (permalink)
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Default Re: Frustated with Excuses (Venting!)

Chewy,

Forgive me for saying that this relationship sounds like there were significant rocks on the road pre-ALS. Given that, are you sure you and he want to sign on together for the whole ride? Better for both of you to go your separate ways now than for it to happen later, or for you to wish it had.

Best,
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Old 03-19-2017, 09:43 PM #3 (permalink)
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Default Re: Frustated with Excuses (Venting!)

My husband is very selective about his activities. Every now and again I will press a little on something simple and non strenous, like going to dinner because we eat anyway but generally, I respect his wishes.

I can understand your PALS saying he was to worn out to come visit - energy is an odd and precious thing in ALS. He could an hour later decide he wants to get Vitimins at Walmart because being exhausted one hour can all change in the next.

I hope he is not eating expired supplements because some of those can cause stomach upset, etc. but if taking vitimins makes him feel like he is doing something, I say let it be.

In any case, you can't really control how he deals with his condition, but you can control how you handle it and let it effect you. Take a deep breath and go with the flow, it might save your sanity.
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Old 03-19-2017, 11:14 PM #4 (permalink)
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Default Re: Frustated with Excuses (Venting!)

I don't know what was going through his mind. And, as Laurie said, it sounds like there may have been some issues in the relationship before ALS.

I will give you my perspective as a PALS.

Fatigue is insidious. Sometimes, for no reason at all, I feel too tired to do anything. I am not sleepy tired. I am physically tired. I can sit in front of the computer or watch something on TV, but anything that requires mental or physical effort (especially interacting with other folks) is just out of the question.

Often, this level of fatigue is preceded by doing too much. For example, an out of town trip or a day where we go shopping. But sometimes, the fatigue comes out of nowhere.

I do not believe there is any way I could have understood the depth of the fatigue without actually experiencing it. It is not imaginary and no amount of willpower will overcome it.

I am not saying this was the case with your PALS on that occasion, but wanted to let you know that sometimes we PALS really are too tired to do something, even something we desperately want to do.

Steve
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Old 03-19-2017, 11:34 PM #5 (permalink)
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Default Re: Frustated with Excuses (Venting!)

I do agree that the way ALS fatigue works is very hard to describe.

Many PALS also experience a lot of embarrassment over what the disease is doing to their bodies, even if they may not say this to someone else. This means it will take even more energy to interact with people.

What is the plan for his care as he progresses and needs someone with him all the time? I do agree you may need to really think about where the relationship is at and where it is ultimately going to go to.

If what you are describing is how he has always been, then it may not be the ALS but may be just the way he is. These are such hard things to have to look at honestly and decide on, but so critical to figure through before he needs your full time care.
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Old 03-20-2017, 12:18 AM #6 (permalink)
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Default Re: Frustated with Excuses (Venting!)

I know this may be a stupid question but have you tried talking to him about your feelings? Of course, he may not understand or even be able to. This disease is quite consuming for our PALs. My grandchildren came up for the weekend. Steve doesn't have to lift a finger for them and we make sure they don't ask him for anything. Just the extra company and noise do a number in him. He's exhausted when company leaves. He doesn't go anywhere anymore and is very fatigued.

You can't change his energy level but you can let him know that you want to spend time with him and try to meet in the middle. Maybe that means quiet time together. Like has already been posted, there sounds like there were issues before his diagnosis. You have to put yourself first and figure out what you can deal with. I am sure in your heart you just want to be there for him. That will mean a lot of giving on your end.

Best wishes and keep the communicating open.
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Old 03-20-2017, 09:24 PM #7 (permalink)
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Default Re: Frustated with Excuses (Venting!)

ALS will rob you and your pals of physical, emotional, and mental health. Pals have little control over how they feel and what they can do. Instead of looking at it from he cant, you might want to try the things he can do. Could he have skyped with your son? Could your son have gone to his place? What does he have energy to do....many PALS live with a high level of deep fatigue.

Lastly, to you, I would say that things may be difficult jow but they will become more difficult. If you do not want to be there as things get worse then let him go. This way he knows what must be done to secure help.
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Old 03-20-2017, 10:10 PM #8 (permalink)
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Default Re: Frustated with Excuses (Venting!)

Dealing with ALS together requires insane amounts of love.
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Old 03-21-2017, 12:09 AM #9 (permalink)
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Default Re: Frustated with Excuses (Venting!)

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
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Old 03-21-2017, 08:20 PM #10 (permalink)
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Default Re: Frustated with Excuses (Venting!)

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Originally Posted by lgelb View Post
Chewy,

Forgive me for saying that this relationship sounds like there were significant rocks on the road pre-ALS. Given that, are you sure you and he want to sign on together for the whole ride? Better for both of you to go your separate ways now than for it to happen later, or for you to wish it had.

Best,
Laurie
Yes, there were, and we actually took a break from the relationship because of some of those issues. Then he was diagnosed with ALS, and I thought that was the reason he felt the way he did. :/
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Old 03-21-2017, 08:28 PM #11 (permalink)
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Default Re: Frustated with Excuses (Venting!)

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My husband is very selective about his activities. Every now and again I will press a little on something simple and non strenous, like going to dinner because we eat anyway but generally, I respect his wishes.

I can understand your PALS saying he was to worn out to come visit - energy is an odd and precious thing in ALS. He could an hour later decide he wants to get Vitimins at Walmart because being exhausted one hour can all change in the next.

I hope he is not eating expired supplements because some of those can cause stomach upset, etc. but if taking vitimins makes him feel like he is doing something, I say let it be.

In any case, you can't really control how he deals with his condition, but you can control how you handle it and let it effect you. Take a deep breath and go with the flow, it might save your sanity.
Yes, I agree with you about just "letting him be" if he feels like something he does is helping him. But, I am a scientist and my training logically tells me otherwise. I could be completely wrong though! Which is why I posted here instead of venting to him. I have no idea how this disease must feel to him, and I try not to upset him unjustly. I don't believe he is taking expired supplements. He just has a large variety of things I know are old and should be thrown out.
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Old 03-21-2017, 08:34 PM #12 (permalink)
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Default Re: Frustated with Excuses (Venting!)

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I don't know what was going through his mind. And, as Laurie said, it sounds like there may have been some issues in the relationship before ALS.

I will give you my perspective as a PALS.

Fatigue is insidious. Sometimes, for no reason at all, I feel too tired to do anything. I am not sleepy tired. I am physically tired. I can sit in front of the computer or watch something on TV, but anything that requires mental or physical effort (especially interacting with other folks) is just out of the question.

Often, this level of fatigue is preceded by doing too much. For example, an out of town trip or a day where we go shopping. But sometimes, the fatigue comes out of nowhere.

I do not believe there is any way I could have understood the depth of the fatigue without actually experiencing it. It is not imaginary and no amount of willpower will overcome it.

I am not saying this was the case with your PALS on that occasion, but wanted to let you know that sometimes we PALS really are too tired to do something, even something we desperately want to do.

Steve
Thank you so much for your insight. You have described the same feelings he seems to have, too. And, I think some of our issues before were due to ALS, but it just hadn't been diagnosed yet. I just don't understand how visiting with other people, even at his own home, can exhaust him. I guess that is just something I will have to learn to deal with.
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Old 03-21-2017, 08:40 PM #13 (permalink)
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Default Re: Frustated with Excuses (Venting!)

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I do agree that the way ALS fatigue works is very hard to describe.

Many PALS also experience a lot of embarrassment over what the disease is doing to their bodies, even if they may not say this to someone else. This means it will take even more energy to interact with people.

What is the plan for his care as he progresses and needs someone with him all the time? I do agree you may need to really think about where the relationship is at and where it is ultimately going to go to.

If what you are describing is how he has always been, then it may not be the ALS but may be just the way he is. These are such hard things to have to look at honestly and decide on, but so critical to figure through before he needs your full time care.
We don't really have a plan at this point. He is not walking very well and his speech is starting to slur, but he and I live separately. His parents are extremely religious and would definitely frown upon us living together even if it was for his health issues.
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Old 03-21-2017, 08:48 PM #14 (permalink)
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Default Re: Frustated with Excuses (Venting!)

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Originally Posted by scaredwifetx View Post
I know this may be a stupid question but have you tried talking to him about your feelings? Of course, he may not understand or even be able to. This disease is quite consuming for our PALs. My grandchildren came up for the weekend. Steve doesn't have to lift a finger for them and we make sure they don't ask him for anything. Just the extra company and noise do a number in him. He's exhausted when company leaves. He doesn't go anywhere anymore and is very fatigued.

You can't change his energy level but you can let him know that you want to spend time with him and try to meet in the middle. Maybe that means quiet time together. Like has already been posted, there sounds like there were issues before his diagnosis. You have to put yourself first and figure out what you can deal with. I am sure in your heart you just want to be there for him. That will mean a lot of giving on your end.

Best wishes and keep the communicating open.
Thank you for your response. Yes, we took a break from our relationship for awhile before his ALS diagnosis because I was so frustrated. When he was diagnosed, I thought that was the underlying reason for some of his quirks. I will probably never be sure though. It does help to know that company really does exhaust people with ALS. I guess from my non-ALS brain, I can't understand how sitting and talking with others (even just 1-2 people) can be so taxing.
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Old 03-21-2017, 08:54 PM #15 (permalink)
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Default Re: Frustated with Excuses (Venting!)

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Originally Posted by gooseberry View Post
ALS will rob you and your pals of physical, emotional, and mental health. Pals have little control over how they feel and what they can do. Instead of looking at it from he cant, you might want to try the things he can do. Could he have skyped with your son? Could your son have gone to his place? What does he have energy to do....many PALS live with a high level of deep fatigue.

Lastly, to you, I would say that things may be difficult jow but they will become more difficult. If you do not want to be there as things get worse then let him go. This way he knows what must be done to secure help.
You have brought up good points that I did not think about on Sunday when I posted here. Skype didn't cross my mind, but my son and I could have gone to his house except that my son was doing laundry and packing to go to his dad for the night. In my ignorance at the time, I didn't fully understand how a short visit really could wear him out as much as it did. I plan on being with him for the long haul because I know he would do the same for me if I were the one with ALS.
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