Confused

I am a little confused in addition to feeling lost. The hospice nurse was here this morning and I did nothing but cry. I've done a lot of that lately without good reason. I question my mental state since I've always been able to problem solve and seldom cried.

It's over two years since my diagnosis. I would think that the anger, anxiety, and frustration would have occurred before now. Instead I am now experiencing a feeling of isolation and find myself questioning where the old me has gone. I feel most days like I am just a blob sitting in a powered chair that gets me here and there but that by the end of the day I have accomplished nothing worthwhile.

Reading the different posts on this forum has always helped me see that I am much luckier than many. I am hesitant to post something as silly as my crying. I am on an anti-anxiety pill as well as antidepressant. When I talked to the nurse earlier she said that what I feel is normal and crying is good. She also suggested that I ask others who are ALS patients if they went through the same emotional ups and downs. Thus the reason for this post.

I think what you are feeling is what many of us pals feel. Yes I have felt the ups and downs. My faith in God helps me through those, though. This forum is also a great place to talk to others who are going through the same struggles.

I think even people who do not have an illness have those moments of crying. I know I do that once in a while and I usually feel better after a good cry. There is no reason for you to feel bad for posting about this and I don't think it is silly at all. Please know I am here if you need me and maybe we could plan a time where we could both have a good cry.

Dana

Diane,

Please consider consulting with your neuro about adjusting your medications with something directed at pseudobulbar affect or emotional lability. It's a very common problem for a lot of PALS, and can make your life more miserable than it has to be. Some antidepressants/anti-anxiety drugs can help more than others, and there is a new drug called Nuedexta that has been doing some amazing things for serious cases of EL.

I don't have ALS, but my husband does. We just had a very difficult weekend. He did some crying, and I cried buckets. It isn't the first time, and I am sure not the last time! As this disease begins to progress, it takes so much with it, chipping away and taking life away. Each time there is a physical change, adjustments have to be made with accomadations, equipment, life style, routines, self care... and that certainly is worth a good cry now and then! Sometimes I even wonder if my husband feels or will feel jealousy because I can do things he is no longer able to do. Please, know you make a difference when you come here. Your words of advice, sharing a tip, telling about something that works for you...etc...and it even helps to know someone else crys. You are not alone! God Bless!

Isolation, Dianne, what a difficult thing it is to deal with. Despite having a big, vibrant family and deep friendships, I find isolation creeps in on me sometimes; like frost! I've been thinking about your post for half an hour, and haven't found any great words of comfort or advice; but it is nice to be able to stretch out across to the other side of the globe and hold hands!

Grace and Peace to you.

I Love You Diane! You are very important to this forum, crying I would think is normal, but do see if maybe they will change some meds around. I am a cals, but still after a little over a year diagnosis, I break down and cry. It has been a tuff week, first we got the cough assist machine, today the BiPap and suction machine. I think with each new thing taken away, it is a let down emotionally. Does that make sense?

Diane,
Sorry to hear about your tears. Please ask your doctor about Nuedexta. It is amazing at keeping the pseudobulbar affect under control. Last week I waited too long to refill my script and had to wait three days for my pharmacy to get it in. I was a blubbering mess by the end of the second day. This is a new drug only released in February of this year. It is certainly worth a call to your neurologist. I will lift you up in prayer.
Blessings,
Linda

Diane,
I just posted a message about Nuedexta and how amazing it is for pseudobulbar affect. It has disappeared, maybe went to moderation. Please call your neurologist. It is a miracle drug.
Linda

Is that for the crying Diane?

I love you too Diane. I try not to cry much but just can't help it sometimes. I agree that you should talk to your doctor about it. She/he may know what to do. You've been through so much lately it's understandable that you'd be emotional. Don't be too hard on yourself Sweet Diane.
Love you bunches

Diane, do check into the drug for EL like Allen suggested. And never feel that any thread you start is insignificant or trivial! Sending you hugs!

(((Hugs))) I had my first EL episode today at the grocery store. I ended up sobbing uncontrollably over a bunch of stupid stuff. Fortunately a lady from my church was there and gave me hugs and tissues. I also vote for talking to your doctor about medication.

You are usually so balanced, but you have been through alot recently....crying is normal for our situation, but my clinic always asks me if I start laughing or crying for no particular reason....if thats the case you could mention it to your doctor. I love you and pray that you find your way through this maze of emotions and find the center of your being at peace.

Diane,
It's ok to cry. It's an outlet for emotions. This is a tough thing we are facing and we are justified in letting our feelings out. I do agree with medication to take the edge off.
In a wheelchair or out, you are a vibrant, successful person. ALS will not change who you are inside.
You are loved Diane. Don't think your alone for one minute. We are all here for you.
Hugs and love sent your way,
Susan