Down in the dumps...

[Schmutz]

Warning - this will be a feeling sorry for my self rant.

"Couldn't sleep last night. I got an awful headache at 1:00 am and it proceeded down my neck and into my shoulders. Then my feet started to hurt. This morning it was
truly hard to get up and I began to feel that this whole process is more than I can take much longer.

I have to think about when I will have to use the bathroom. I have to walk to the bathroom which' is so much harder than it should be. In the bathroom I need to use
a new "diaper pad" but they are in the closet in the hall.

When I get downstairs to fix some breakfast my Jimmy Dean delight comes out of the microwave and when I've carried it to the table to eat I discover that it is still cold.

My husband wants to go to the movies but I can't stand the idea of walking from the car to the theater.

I've been totally worthless today! I hate myself for being such a slug. I CAN'T STAND THIS!





'Sorry...

 

[Nuts]

Why are you sorry? This SUCKS. It sucks to hurt and it sucks to be tired all the time.

Do you not have a pwc? It sounds like you really do need a chair of some type so that you can conserve some energy.

Also, get some storage in the bathroom. YOU should not be going to the hall closet for anything you need!

I know these are just small pieces of the big picture, but could some adjustments make life any easier at all?

 

[MaxEidswick]

>I know these are just small pieces of the big picture, but could some adjustments make life any easier at all?

Ditto that, Anne -- look for ways to conserve, make easier ... we feel you frustration ... let's not talk about the toilet!

 

[bigmark1954]

Sorry things are overwhelming you. There is not one person on this forum who hasn't whined a time or two....it just simply comes with the territory. Take a sedative or sleep aid
and get some sleep, tomorrow will be a better day.
BY the way I like Jimmy Dean delights in the morning, try nuking it for 30 seconds, and then blasting it for 1 minute...they come out perfect.

 

[affected]

Oh Schmutz, doesn't you husband help you out?

I imagine you like to be independent but some help, some reorganising as nuts suggests and a pwc just may turn things around a lot to give you energy for the enjoyable things rather than sapping it all on the very basics.

Feel as sorry as you like, this is the pits

 

[vickim]

I don't know I may be out of line posting here but I have mitochondrial myopathy and I discovered a method of plotting out my day. My family supports this because if they don't nothing will get done.

It is the spoon method. Set out a dozen spoons and each spoon represents a task...one for getting up...one for making breakfast....and so on. You decide your tasks. Once your spoons are gone you are done.

I know that I can only do so much and it helped my family to understand better when I showed them the spoons. THe visual helped make it real to them because I don't look sick. THere is a lot of info online about it. I have even learned to save a spoon or two if I know I have something special or demanding coming up. It is hard to not want to do what you used to do and it gets depressing to see things that need to be done but you learn the easy way or the hard way that you can only do what you can and the rest will wait.

I hope this helps and I apologize if I over stepped. Hugs.

 

[affected]

In my books you can't overstep here Vickim, that's a brilliant suggestion!

 

[Mike in Maine]

I have used this forum many times to rant, your in the best place to have folks listen and to get some helpful advise. Hang in.

Mike

 

[Clearwater AL]

Schmutz, first, hubby needs to step up about 5 clicks.

I seldom write of myself but here it is... my Neuro just up'd my Baclofen to 30 mgs 3 times a day. I'm hoping this works for a while or I guess the implanted pump is next. My knees are beginning to bother me, I can not stand with my legs straight at the knees anymore, I can't lift any amount of weight above my shoulders, I'm sleeping nearly sitting up now and I have lost 55 pounds just over a year.. (That's getting expensive being I have gone from a 38" waist to 32" and now those pants are getting loose. Thank God for $10 dollar jeans at Wal-Mart).

But... you take progression it as comes... improvise, adapt and accept. There are no other options. I always remember those whose diagnosis begins with "A" rather than "P". I read the Serenity Prayer often. I believe in tomorrow... tomorrow may bring a new treatment, a medicine that stops progression, (I'd say a cure but that I do doubt.) Not just for me but more for my wife. Fortunately she seems to have leveled off... for now. But that's a good thing and always take inventory of all the good things. I have to believe in tomorrow more for her than me.

So... improvise, adapt and accept. Laugh as much as you can... even at yourself. I do.

Anywhooo... didn't mean to ramble. Once and a while my soft side shows.

 

[cheerleader]

Al, your soft side is heartwarming to see. But your "other self" is just plain honest, funny, sarcastic, and totally endearing! Glad you have a split personality! Donna

 

[Clearwater AL]

Donna, thank you. Ann's older sister is now in a home for Alzheimers patients. We visit often but... it's the hardest thing I do. (It isn't easy for Ann either.) But, you do what you have to do... you face what you have to face. As a caregiver you have to try to be the Great Convincer that what is for one doesn't mean that will be for you (her). And, you become the Great Conversationalist... during the ride home I wrack my brain for any topic I can think of.

Saying all that to say this... some people who post on another sub-Forum don't have a clue!

(Edit. I originally wrote "effin clue"... I'd like to stay with that. Sorry.)

 

[Port]

Yep.

The Heart so wanting
The body unwilling
Today at least, the heart not big enough.
And so we take stock, a measure so to say
Our cup of courage seems so low.
Still we know, replenishment will come
From some source as yet unknown.
And we wait
For that knock upon the door.

That's how I see it.

 

[Janie H]

I read the Serenity Prayer often

Every day, it helps

Janie

 

[LouLou]

Al, you said this so perfectly! It's what I needed to hear after some recent setbacks. Sometimes you just need a nudge by another person's words to see the light again. Thanks for this! Also, prayer is so good. It's hard to get down to kneel when I pray, but I still do it and God sees and hears me.

 

[kfletcher]

Don't feel sorry....we've been dealt a crappy hand with PLS! I no longer walk & can barely stand up against the bed long enough for my hubby to pull up my brief (aka...my diaper). I went to my 1st support group meeting & everyone else had some type of muscular disease & they were all about.....there's a reason I have this, God doesn't make mistakes.....then came to me & I said I can't agree with any of you...I'm mad, frustrated, humiliated, sad, and quite honestly feel useless & that my being alive is an unnecessary burden on my husband & family. I try to stay positive, but when I need my husband to lift me in & out of bed, the commode, the shower, the car....I've suffered 2 broken ribs from improper lifting last June...I can't help but to feel just tired of it all. Now more testing shows degenerative disc disease & spinal stenosis, so when I go back to the Neuro next month we'll discuss if a neurosurgeon would consider me a candidate for surgery. I sit & wonder what did I ever do that was so bad, that I have to endure this....the pain, the swollen feet above everything else.....why? Now that'a rant....