Feeling the pain

[Denny]

Well another night of broken sleep.Only to wake up to this monster ALS!
I wonder how I'm going to make some sort of life out of what I have left, I'm so depressed!
I know live in the moment!.Sitting around the house is such an adjustment for me, never was much of a reader. I need to be productive.Acccepting this big life change is killing me.
If it wasn't for the fact that I adore my wife and love my family there wouldn't be much to live for.
Sorry you guys for the downer post but I'm feeling it bad lately!I'm having a big pity party for myself.And I'm sort of just starting out on this ALS journey. I truly don't have a good outlook on all this! They say stay positive wow! thats a stretch for me.
I'm a thinker and I know you have a choice on how you want to think, positive or negative or maybe somewhere in between. But I can't think of much good about this disease and the future. What could anyone have done to deserve this.I need to get a grip my family has to look at me.I feel like less of a man ,wow this hurts!

 

[HelenL]

Denny, we've all been through what you're going through right now... it's ok to have a pity party for yourself, just don't stay there... no matter what the future lies ahead, you have today. Many people die without knowing when they wake up that morning that it would be their last day.

You say you were never a reader? Well, find something that you like to read, even if it's comic books. Do you have a little money? Do research and try online investing in a small way. If you don't have trouble with your hands, start knitting, glass work, or painting. Keep your mind and body busy, and you'll find your way.

Talk to the doctor about your sleeplessness (is that a word?) and get some meds to help make you feel better. You don't know your timeline yet, but you could live 2 years or 12 years... personally I'm on the at LEAST 10 year plan, I also have children I want to see grow up.

Stay online here, read all you can, join a clinical trial, get involved... and laugh and cry with all of us here. We all do it, and it hits you at the wrong time sometimes you just have to give yourself permission to cry.

 

[momap53]

Yeah, it really sucks to have ALS. I seem to be able to forget about it in those last few hours of sleep in the morning. Ah, then the alarm goes off and it's a struggle to turn over in bed to turn the alarm off. Another struggle to sit up. More struggle to get socks and shoes on my feet. A slow stiff legged walk to the bathroom with my friend HUGO(rolling seated walker) If I want to shower I need to make sure someone is home, just in case I need assistance. Then there's the fatigue arising from these most simple of life's daily activities! But Denny, I'm so grateful that I can still do these things. The day is coming when I will have to rely on someone else to assist me. I'm hoping it will be awhile before that happens but I just don't know. I've always been the cavegiver and am finding that it's really crappy to have to be on the receiving end.

Please try to embrace the things that you're still able to do while you can do them. Anticipatory greif just does not help us at all. Save the mourning for after they're gone and then make it brief. Do whatever you can around the house. Try some of the "talking" books. My SIL was never a reader and since she discovered these recordings, she's NEVER without one. The stories really do help to carry you away from your limitations for a while.

Make a list of your blessings each day to try to help you turn your attitude around. It's really easy for us to count the negatives as each ability is stripped from us.

None of us deserve this, but we've got it and will have to find a way to cope.

 

[Ladyinn]

Hi Denny, I have been off of the forum for a few days and just read your post. I was diagnosed in the fall of 2009 and I can't say that I have adjusted yet. I have my good days and I have my bad days -- and the good days are beginning to outweigh the bad.

Right now I am struggling to use the computer since my arms and my hands are no longer moving. I have gone to Dragon naturally speaking and find it more frustrating than helpful. My challenge in 2012 is to learn how to use it productively and to correspond more regularly.

I am a reader and have a Kindle since I can no longer hold books or turn the pages. On average I read a book a week. It helps to keep my mind active and off of the things that I can't do.

I was recently measured for a power chair since my legs don't hold me up anymore either. I can hardly wait to get it. We are also thinking about remodeling our bath shower it is very difficult for me to make small step into the shower and it takes so much energy out of me my day is shot when I shower.

I tell you these things for one reason -- don't worry about the future just learn to adapt to the moment.

We are here for you, and it is okay to rant and rave, to cry and scream and occasionally -- just don't make it your way of every day life. It i is a horrible disease, but you will find, in time, that you can adjust to most things if you bring your sense of humor and love of your family to figure out what is best for you. Come here any time -- we have been where you are and understand. ?"Hugs are being sent to you.

 

[notgivnup]

Hi Denny, we all feel that pain, it is what we choose to do with it. I resort to humour when needed, which is daily. WE have all been right where you are and I am so sorry you are here with us, but we help each other the best we can. It's ok to pity party and as others have said dont stay there. My son put things in prespective when I got my diagnosis, he looked at me and said I could get hit by a bus too or have a heart attack, point being non of us know what the future holds, Even miracles. My prayers are with you to find peace in the midst of this storm. You will have good days and bad ones, but together we help pick each other up. As you adjust to your new normal we will be there for you, you are not alone. Hang tuff Denny, you can do it, we all can, I have to believe that. {{{BIG HUGS}}}

 

[AKjo]

Thanks to all for your encouragement to not only Denny, but to me. I am not the one with ALS, but these are thoughts I need to hear to help reassure and energize Gary.

 

[Magpuff]

Ladyinn got me started on making "can do" lists instead of dwelling on my limitations. And using humor helps me too.

Yes, I still break down and cry occasionally for all the things I can no longer do and the burden I am on my husband but the good so far outweighs the bad.

If you are into computers there is a lot of technology out there to help you adjust. For instance I type with my head I can still see, hear, and enjoy things....just differently.

Do the best you can, allow people to help you, and remember...... the kind folks on this forum will be there for you through your journey. ((hugs))

 

[ladyrider]

I have been where you are many days. They are not fun! Yes, this is a beastly disease. But remember, even though you change on the outside you're still the same person you were before. I'm not saying it's easy by any means, but it's better when you focus on now and not tomorrow. Keep the faith, God bless!

 

[notme]

We're all entitled to bad days and a little self-pity is just fine!

Live each day in the moment. Do all the responsible things that take care of your family....then set it aside and enjoy every moment you can for as long as you.can.

They say necessity is the mother of invention. Try things you've always wanted to try. Take that road trip to wherever you've always wanted to go. It's kind of cliche, but I try to think of one of my favorite songs when my health crap really gets me down. Don't know the title, but the theme is this: I hope you get the chance to live like you were dying.

Song about a guy whose friend was dying..and the guy did all the things he'd wanted to do...bull riding, rock climbing...well, you get the gist.

This is a great site with great people that will be here for you on the good days and the bad. Rant away...it's a healthy outlet. The stages of grief are normal. Depression is one of those stages. ALS doesn't define you, and it doesn't make you less of a man. No one deserves it, hon. You're so right about that.

It can help to find someone to talk to. Keeping things bottled up inside is not good...and you're helping yourself by getting them out here. That's what the rant section is all about.

Hugs

 

[glupavomomiche]

Hey Denny, just wanted to say I know exactly what you're talking about and understand completely. I'm on month 5 post diagnosed and it's still really hard. The emotional rollercoaster I'm on is far more terrifying than the real coasters I've ridden (and that includes Son of Beast at King's Island when it was still the only wooden roller coaster in the world with a loop in it... a real crap-your-pants ride). There are good days and bad days and yes, nights are the absolute worst. I can't sleep without taking something. Ask your doctor for some sleep meds and in the meantime take some Tylenol PM (or Benadryl for the non-paracetamol version). I'm still working, which wears me out so bad I'm thinking it's not worth it, but on the days I stay home I hate it so much I'd rather be at work. Can't win for losing! I'm thinking if I quit I'd really like to volunteer. Anywhere, doing whatever. I know the state supported living center here wants individuals to come help paint murals, so I'd like to do that while I still have one hand working. Heck, I'd work in the hospital gift shop if they'll have me. Anything to keep busy! You'll find your way too. Just keep trying new things and find what you CAN do and do it while you still can! Hang in there! ~ Sarah

 

[pearshoot]

finding my comfort zone was priority #1 after being diagnosed. mine was make my body as healthy as possible, study some specific diet supplements , healthy diet and exercise routine. maintain healthy body weight, that sometimes require extra calories. can you slow progression, who knows but develope an attitude you can, close to a drug trial clinic put your name on the list, i am 190 miles from the clinic and in my second trial. have been truly blessed with slow progression, walk, talk, eat, breath, drive on my own. this is not written to brag but to offer hope