Rant - pals only please

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sleepy

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111
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PALS
Diagnosis
01/2016
Country
AUS
State
NSW
City
Armidale
I'm 6 months in. I've tried to be positive to friends and extended family. It's ok... I'm staying positive. Because what else can you say? And most of the time it's true.

I've tried to keep a brave face for my kids. Mummies hands don't work very well... Yes, Mummy is very slow. Why did you fall over?

I've tried to stay positive and express my gratitude to my cals. I know it's hard. And I do appreciate everything. But I am tired of the fight every time I question or remind or disagree.

But today, I've done all I can.

I'm sorry it's tough, but believe me, it's going to get harder. How am I supposed to believe it's all going to be manageable then, when you get so cranky now? And even so, try to remember that it's at least as hard for me.

I'm struggling to respond to comments that I appear too well to guests and then exhale with exhaustion when they leave. Of course I put my best face on! And then on days when I just can't you get frustrated that I don't want to go anywhere or do anything (when we know it's not chair accessible).

I hate getting left in the car for an hour or more while you get things done. Because you made an executive decision. I hate that when we take the manual chair you leave me and wander off. I hate that when instead of complaining, which would be met with defensiveness, I choose to get taken home first, that also pisses you off.

I hate that you made me cancel the appointment for the ez lock installation and now complain that it's such a hassle to get the power chair in and out with tie down straps.

It makes me so mad that you complain that you can't do what you want to do because you are doing stuff for the family. I get scared when I stand up that I might fall. Again. How much do you think I get to do what I want? I can't pour myself a drink!

And when I got so mad about everything being done to your timetable and to your priorities and I asked to be taken into town, once, apparently I didn't ask the right way, or my tone was wrong.

I hate that 2 nights ago you talked about supporting each other and I started to feel the cloud lifting and then today you screamed at me over something from last Monday until I sobbed and begged indecipherably for you to stop.

I'm sorry your life sucks. Try not to forget mine sucks too.
 

WendyWooG

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Jan 10, 2016
Messages
518
Reason
PALS
Diagnosis
07/2016
Country
Uk
State
Hertfordshire
City
Stevenage
Huge huge hugs to you Sleepy,

I hate when I call for something and I can hear my husband and my daughter arguing over who has to get up and do it. Then they tell me I am silly for feeling like a burden.

Wendy xx
 

sleepy

Distinguished member
Joined
Dec 4, 2015
Messages
111
Reason
PALS
Diagnosis
01/2016
Country
AUS
State
NSW
City
Armidale
Hugs to you too Wendy. I know how you feel
 

tripete

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Joined
Dec 5, 2014
Messages
998
Reason
PALS
Diagnosis
12/2014
Country
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State
PA
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Lancaster
Men can be jerks. We want to fix everything and have it be better. When we can't then we get extremely frustrated and do not know what to do. Even when what we should do is right in front of us. It is hard for us to be caregivers and not fixers.

As a PAL it seems like I spend more time caring for those around me then being cared for. It is extremely difficult for me to ask for help, like getting my fingernails cut. And then if they do not do it to have to ask again is the worst. It is not that my wife does not care just that it is hard on her also.

The emotions we feel are reel, the sadness, anger, rage, and loneliness are all part of the horrible legacy of this disease. It effects us in ways that I am afraid I have just begun to experience.Each day is a new set of difficulties and a new nightmare. It is good to have a place to discuss our struggles.
 

Ells

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Joined
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206
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PALS
Diagnosis
03/2007
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XYZ
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MY ACCOUNT
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PLEASE DELETE
I’m in no doubt that I’m a burden on my husband and will be to the day I die.

The “good” thing about kids being young at diagnosis is they grow up helping; doing mummy’s meds & peg feeds, so I don’t just have to rely on hubby to do it.

I don’t deny it’s unbelievably difficult for my husband; he had to change jobs (and wave bye to a successful career) to a 9-5 day, to be home every single day to cook dinner for the kids and look after me. He gets extremely grumpy and goes weeks without uttering a single word to me. You know what R, life’s no picnic for me either but there’s sweet F.A. I can do about my disabilities. But then there are times when he’s not so stressed and he does talk.

So, I’m in no doubt that I’m a burden on my husband and will be to the day I die. But I know, despite it all, I am loved.

Fellow Burdenistas - it's not like we want to be reliant on others, is it?? Oh how we wish life was as before :cry:
 

azgirl

Senior member
Joined
Jan 20, 2014
Messages
956
Reason
PALS
Diagnosis
12/2013
Country
US
State
AZ
City
Tucson
So sorry, sleepy. I too have felt all those things you expressed. It's so so hard to go from being the strong one who took care of the whole family, to being this lump that sits in the chair all day and needs everything done for me.

I think that this caregiving does not come naturally to a lot of men, my husband included. I know he would do anything in the world for me, but he does so with this grumpy look on his face. I am hesitant to ask him for anything but the bare minimum. But it seems the bare minimum is getting to be more and more every day. I grieve the relationship we had which was absolutely wonderful. Personally, I think he could use an antidepressant which he refuses, maybe that would help your husband.

A few things that have helped are getting more assistance in the house, and making sure he has time to go work out three or four times per week. also, we had a real hearn to heart discussion about how I was feeling.

Wish I had some great insightful advice for you, but this is just an impossible situation. Maybe it helps a little to know that there are others out there who know exactly how you feel.
 

Margesmn

Active member
Joined
Mar 23, 2016
Messages
66
Reason
PALS
Diagnosis
11/2015
Country
US
State
MN
City
Minneapolis
Like, AZgirl, I too have experienced all of those feelings you expressed. I get very frustrated very easily. There are so many things I wish I could do and many days I don't want to do anything. I feel pretty useless.

I try to do the things I still can, make phone calls, pay the bills and keep track of appointments. I think what helps me the most is to take one day at a time. How can I get through today? While we want to stay ahead of the disease and prepare, I try to spend as little time there as possible because it overwhelms and scares me. I try to do what I can to enjoy each day. I'm not always successful but I try.

Thanks for putting into words how I feel about the brave face. Everyone says, "You're handling this so well!" Yeah.......about that.....
They see the brave face. I think I need to let more people see and know the 'life sucks today' face. Not every day is rainbows and unicorns. This disease sucks and I think it's ok to let people see that.

Thanks for putting your feelings out there. It helped me and gave me lots to think about.
Sending you strength.
M
 

chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,255
Reason
PALS
Diagnosis
02/2015
Country
US
State
wv.
City
renick
Great thread!!! Frustrations have been the biggest challenge for me. Not being able to do any thing for myself much lest for the family really hurts, but IIWII and new levels of acceptance
Are always needed to not have a long term break down.
( short term , OK ) but get over it ,move on ,one day at a time .
This forum s support rocks, love ya all chally
 

KimT

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Extremely helpful member
Joined
Nov 18, 2014
Messages
3,685
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PALS
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08/2015
Country
US
State
South
City
The Beach
Here's my perspective on all of this. Pete, I wish I HAD a man who wanted to fix everything or anyone who really wanted to help. I've been so independent all my life that many people are still counting on me to do their taxes, help them with insurance, answer questions, and even pick up their prescriptions. I thank the Lord I'm still able to drive and to do these things.

I have no kids or grandchildren. The relatives I do have said the following, "Don't worry about leaving money to me....leave it to the church." "When you run out of money, you can go on Medicaid like everyone else." "I don't believe you have ALS." "You are going to make a comeback." "When you get all this straightened out, you can enjoy your life."

I've had friends questioning me on whom I'm going to leave my condo to and suggest I give things away while I'm still alive, including money. I've had friends I've helped, both financially and emotionally, run when they heard my diagnosis. These were close friends! I guess you'd call them fair weather friends.

Nobody from my Department has called since I left work. I hired and mentored most of them. They have ME to thank for an easy job. While I was working I carried the load of the Department and they were spoiled. Maybe they have to actually work hard now so they have no time to call.

I know this sounds bitter and somewhat boastful. Last week I threw out all my awards, certificates, professional licenses, and hundreds of thank you letters from students, other faculty and administrators. I can't talk about this because I'll be accused of being negative.

I put on a smiley face when anyone throws me a bone.
 

gooseberry

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Joined
Jul 2, 2014
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3,457
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Lost a loved one
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5/2014
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FL
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Tampa
I know you pals only....I just wanted to say I am so sorry. It doesnt have to be like this.
 

bigmark1954

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Joined
Jan 31, 2014
Messages
1,010
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PALS
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US
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UT
City
taylorsville
Mann....this lifestyle really sucks. It takes me all day to do what I used to do in an hour or two. The constant fear of falling seems insurmountable. The frustration of not feeling viable, and the disintegration of health incrementally is overwhelming.

Some days it seems inevitable to just give up spend the day in bed. But still I fight, with sadness being the dynamic. I can't even watch TV without crying now days because things remind me of my life before this curse.

Perhaps tomorrow will be better.....but I doubt it.

We all are in a very similar funk. Yet our progression is so variable, but equally
sh!tty.

Try to keep your chin up sleepy.
 

tripete

Senior member
Joined
Dec 5, 2014
Messages
998
Reason
PALS
Diagnosis
12/2014
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US
State
PA
City
Lancaster
I'm with Mark
 

Jocalyn8

Active member
Joined
Jun 26, 2016
Messages
86
Reason
PALS
Diagnosis
10/2015
Country
us
State
north carolina
City
Charlotte
Dear Sleepy,

I so get it! My turn to Rant.........

Every time I see friends they say:

"wow you look/seem so good". WTF do they expect me to look like?
"I would stop by more often but, I am having a hard time with your DX." Oh me too!

" You seem sad.. maybe you should take antidepressants" Of course I am sad.....I am only 50 and my beautiful life has been ripped away from me! If I was not sad you should be concerned! Are you all taking anti depressants? Does it help?

The worst is all of the vulture women my handsome husband works with texting him offering to be there for him in his time of need. REALLY?
Poor dumb hubby says" they are just being nice" BS!!

I wish they would stay away from him and my boys, not look at this as an opportunity to take over my life.

Ok I am done thanks for listening.
Cheers,
Jocalyn
 

sleepy

Distinguished member
Joined
Dec 4, 2015
Messages
111
Reason
PALS
Diagnosis
01/2016
Country
AUS
State
NSW
City
Armidale
Jocalyn I'm sorry, that sucks. I do take an antidepressant and it does help. It doesn't fix it. But it makes it bearable. It takes the raggedy edge off.
"I'm having a hard time with your diagnosis "... Yep, I have to stop myself saying "oh you poor thing, don't worry, YOU'RE not dying..."
 

tripete

Senior member
Joined
Dec 5, 2014
Messages
998
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
I understand the struggles, but I cant allow myself to feel sorry for myself. It is a VERY slippery slope.
 
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