ALS bites,

[BeckyW]

I had a meltdown today and I hate was this monster is doing to me! My morning went well but this afternoon when Doug was out blowing leaves. I got hungry so I went into the kitchen and spent ten minutes looking something to eat. I bit my lower lip yesterday so it's really sore. I have trouble swallowing too. Then it hit me...I couldn't slice the bread or open a jar. Even opening the frig takes two hands for me to open it and I have to hang on to something or my walker so I don't fall again. I have bruises already from falls the past week. I felt so helpless. When Doug came in and apologized for not coming in earlier to get something for me to eat. I lost it....poor guy didn't see it coming...then I feel guilty to be falling apart. I wanted to scream but I can't make a sound. My husband is wonderful and is doing his best to do everything around here and care for me. I feel like an ungrateful spoiled brat. He helps me with my tube feedings because I can't do it. ALS bites!

 

[Alyoop]

Hugging you Becky. It must be terribly frustrating. No one that is not in your position can even begin to imagine how hard it is. All you pals are heroes. Your husband probably thinks the same every single day.
Love ya Aly

 

[Jim Mulligan]

Becky, no one will fault you if you want to use stronger language than "Bites". And don't think of yourself as spoiled. Your situation is enormously difficult, and the fact you are coping as well as you are speaks volumes.

 

[TedH5]

Your husband understands and you are right ALS does bite and it is OK to vent!

 

[notgivnup]

Becky so sorry you are struggling and feel like you have blown it. You have not, it is just frustration rearing it's ugly head. I go thru this also, we all do so dont feel bad. I am sure your husband can understand, he must feel frustration also at times. Be kind to yourself and know you are not alone. Vent when needed, I find it helps. This disease does BITE! no doubt. Sending Big Hugs to you! Virtually holding your hand, we can do this together.

 

[llwlpn]

(((Hugs))) Becky, nobody's perfect. I'm sure that each one of us has had a meltdown at some point in this horrible disease. Forgive yourself and move on. It is so very frustrating when even the simplest things become difficult.

 

[BeckyW]

Thank you friends...you are priceless!

 

[laurel]

A huge hug to you Becky. You aren't an ungrateful spoiled brat. You indeed are a hero not to come totally unglued trying to manage this horrible disease.
Laurel

 

[susanf]

Rant away, we're here for you. I'm frustrated too. My daughter has to speak for me on the phone and in public. She's 12.

 

[HelenL]

It's so frustrating not to do stuff that we take for granted, and it just keeps getting worse and worse... so vent away, we do understand, even if our exact issue at the time isn't exactly the same as yours.

I have a suggestion though: when hubby (or anyone else is around to help) prepares food, have him put a few things in small containers that are easily opened (or in plastic wrap), that you can pick at without too much effort. I'm thinking back to the days when my kids were toddlers, and I'd put snacks in small containers they could get out of the fridge or cabinet by themselves Carrot sticks par boiled, crackers/cheese, etc, partially opened water bottle so we can open it up easily.

sending you a giant hug...

 

[Okie2]

You are right, ALS bites. Meltdowns come and they will go, we just can't dwell on them. I believe just as with anything else that is bad there has to be a grieving process. We all grieve the loss of the things this disease takes from us. We can't bottle it up inside, something has to give.

 

[VoiceforLinda]

Becky,
I understand how you are feeling. I am right there with you. Go ahead and rant. Since we can't scream anymore we have to let it out somehow. No one will judge you on this site. Only love and compassion and gentle hugs. This beast is a terrible thing and you aren't expected to just smile your way through day in and day out. Some days are going to be harder than others. Cherish the good ones as I am sure you do. I do understand.
Linda

 

[LizT]

This is super crappy and i am sorry. all i know is that if i were faced with this disease myself, id do nothing BUT ***** and moan.
and youre not even doing that. this damn disease is more than frustrating, and youve got to be able to get that out.
this is a good place to do that.
hugs to you.

 

[Whitsend]

Becky,
I know exactly how you feel. I went through something very similar just the other day. I had a powerful itch under my AFO and where was hubby? No where to be found! Why is he never around when you need him?
But I really can't fault him, he has sacrificed a lot because of this disease.

 

[SueG]

becky, with you. becoming totally dependent from very independent is so hard! seems i'm always ready for a snack, need something moved, or need to pee! so grateful to have family help.
hang in there.