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Lkaibel

Very helpful member
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Joined
May 9, 2016
Messages
1,529
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
Okay, my PALS is still pretty darned mobile (he is driving himself to pool exercises 3X a week), He is doing pretty well emotionally at the moment after a bad patch last week.

Still, I am exhausted, like sometimes I wonder if I need to worry about falling down, not just him. Work is hectic full time plus, and it's true my household chore list grows a little all the time as he can do a little less progressively.

Here some of you are literally doing heavy lifting, and I feel like another bag of trash or load of laundry might kill me some days.

My labs are all good and normal, so this tired is me, nothing health wise.

My emotions are less important to me as time goes on. I don't need a shoulder to cry on as much as I want someone else to make dinner and take the trash out and run a load of laundry. At the same time, tears can be just just back behind my eyes unexpectedly.

They are not tears there is any help for anyway so I try to not get involved in that. It is what it is.

My mom is 81 and needs things too so that is more to do.

It's to bad we can't just have a day off from even knowing about ALS. Maybe spring will help. I am looking very forward to our May trip.

I came home today after getting some things for my mom planning a nap, but I need to go to the liquor store because my husband is all out of his favorite stuff and here we are on the weekend.

I honestly want him not to do without one single thing if I can help it. Maybe when I get back, a Sangria and a movie will help more than a nap even.
 
Lenore - hugs. You are not alone. There are many days I wish for someone to wrap me in their arms, tell me it will be ok and then just take over - everything. I think much of the exhaustion comes from just trying to be the "strong one" all the time. More and more things end up on our plate. I know you are not to where I am, but that's ok, it's still hard. The mental exhaustion is just as draining.

I can tell you that cleaning up my diet, as in all whole real food, dropping anything processed and all sugar has helped with energy to a point. Seems to make me better able to cope with it all. It doesn't eliminate it completely, but it's helped me. I used to run to the sugar/fat - donuts, candy, cookies or ice cream for the love I was looking for. All that did was make me gain weight and less able to handle the stress I was trying to relieve. The first week I did this was tough, but then I got through and I feel much better. I don't know how you eat, and maybe you're already eating that way. Just a thought.

hang in there, you are doing an awesome job.

Hugs,

Sue
 
I recommend selecting some things from this list:
Ask your doctor about a B-12 shot, check for anemia and hypothyroid test, consider an anti-depressant and/or a sleeping pill, take a power nap in a totally quiet and dark, warm place, and get an amazing, long-lasting and super intense orgasm.
That's all I know.
 
Thank you both. All test are good Mike, so it's just me. I do need a better diet for sure Sue. I need to stop waking up for an hour ur at around 2:00 am too. A sleeping pill might be in order. I also can't think of any rational argument against your er, Other suggestion Mike :)
 
When I was at the place you describe, I mentioned it to the neuro I see because my mind was racing. I started on anti depressants and it really helped me to sleep. I am a year out from steves passing and I am still exhausted. Went to and endocrinologist and I have turned hypothyroid. 4 months ago things were fine. He said stress really affects the immune system and could be a contributor.

B vitamins also help. You pee out excess and were a go to for quite awhile. I took a complex at much higher than rda so it was comparable to the shot.
 
Don't think you shouldn't be feeling however you are - this is huge no matter what 'stage' you are at.

Definitely I would consider an antidepressant and a good B supplement won't hurt either. A sleeping pill may do it, but maybe not. I am so sorry I forget if you see a counsellor at all? If not that may really help too - some time and a person where you stop and just look at where YOU are at and what YOU need in all this.

Yep we would do anything for our PALS, but we can quickly get quite lost inside all the million little things that pile up and up.
 
Lenore,
I think that Sue is right. Changing your diet helps immensely. I started eating terribly for about six weeks this winter and felt awful. Depressed. Tired all the time. And so very very sad for my PALS. Cried a lot. Cut out the sugar again and concentrated on my diet and feel so much better. I'm not saying that it's a cure for your feelings as nothing can take the sadness away when it comes to ALS. I actually had a good cry a few minutes ago over the fact that I can now completely encircle my brothers ankle with my middle and index finger. I know it's hard but find 20 minutes a day for yourself and take a walk or do some yoga. Big hugs to you Lenore.
 
Lenore, I feel your pain. I had been feeling completely exhausted and overwhelmed. I felt like I was drowning.

My friend posted on my helpinghands site that I needed help with some things. The things I asked for help on were done the next day.

I also made a list of things and started working to check them off my list, ie a recall on my husbands truck that we had been procrastinating on since his dx. My house was filthy, a friend came and cleaned. As we speak someone, a volunteer is mowing my yard.

I feel somewhat better but honestly, I still think I am struggling mentally with this whole disease. I am still angry at what we have lost. I may try some counseling next. I also think a cleaner diet would help me as well. I have been eating horribly and the way I look adds to my feeling bad.

I am writing this to just let you know, you are not alone. Thank you for starting this post. The suggestions have helped me as well.

Hugs to you! I think we all need to try to take better care of ourselves.
 
Labs with thyroid, B12, anemia check were great a month ago (full panel). I did some melatonin last night and slept through, it helped big time. I think I will try cleaning up the diet and getting some extra B and D vitimins and keeping on with the Melatonin.

Agree with Sooner on being angry at what has been lost. How can we not be? I would be interested in counseling with someone who has worked specifically with this disease and with PALS and CALS, particularly of course CALS. I know that sometimes we in the "ALS Community" have been criticized for thinking of it too much in "exceptionalist" terms, that we are different from everyone else.

I would argue that we ARE special when it comes to life limiting conditions for reasons too numerous and too well known to those here to belabor the point. I would really consider working with someone who understood that.
 
L I know that sometimes we in the "ALS Community" have been criticized for thinking of it too much in "exceptionalist" terms, that we are different from everyone else.

Well I didn't know we are criticised that way :lol: I'd say it's true, we are different so I'd not listen to anyone saying that. Of course it's being said by folk who have not been through what we have ...

My counsellor hit it on the head at the end of our first session when he said - "I can't make this all better, but I do know how to walk the journey with a person". That was exactly what I needed.

Great if you can get someone experienced with CALS, but be open to simply finding someone you feel you can trust to sit and really talk to as that can be just as important a key :)
 
Lenore, when I read your post last night I couldn't respond because it hit so close to where I am right now. I feel exhausted to the bone. I am a type A personality, my brain doesn't stop and it's always "on" trying to learn more, find something better to help my husband, fight the bureaucracy to get it, try to anticipate then next need, etc etc. He also has numerous other medical conditions which I have to be on top of and put out the fires. Add to this the emotional pain that goes with this disease, I've never been very good at emotion( have not shed a tear during all of this), and I am afraid I'm going to collapse from this marathon. I believe I am in complete mental and emotional exhaustion.
I'm sorry I don't have any practical advice to offer you but just wanted to let you know that I know how you feel, Kate
 
I am sorry your husband has other medical issues too Kate. That seems less common for PALS than not. My Brian, in his whole 66 years pre diagnosis has had some minor arthritic issues with his neck, has had trigger finger, and has bad sinuses. I think in the ten years we have been together he has had a cold maybe three times. Talk about blessed.So, even though I thought his heavy family history of cancer would catch up one day, this floored me.

The emotions, yes I so get that. I have never known what to do with those either. I can't say I never shed a tear, but I fear if I ever really let it rip I might not stop for hours or days.
 
Oh, and how is this for truly terrible confessions. I love Brian to bits and I want him to never die, but I want this to be over. I feel like ALS sits in my car, my office and all over my house all the time. I feel like it's a freaking stalking monster that just never, ever really goes away.

Slow progression is a beautiful thing, we appreciate it deeply. Yet the monster sits and waits.

I am going off to work and hopefully a better week. I slept nearly nine hours and it helped a lot. I may be a terrible person sometimes but at least I am an honest one.
 
it is so natural for you to be grieving for the "coupleness" you had when he was healthy--and you took care of each other. having all the weight on your shoulders alone is so hard. Feeling guilty for wanting someone to take care of you a little bit too is not going to help. of course you are tired, of course you want things to be normal. When I was at your stage I found anxiety drugs to be a big help, then moved on to anti depression as my hubby progressed. Therapy is great if yo can find someone who gets what you are dealing with. I had to go thru about 4 therapist (none of them were bad) to find one who truly clicked with me and understood what I was dealing with.

I so remember feeling like ALS was always lurking in the room even when I wasn't with my husband. believe me , you are not a terrible person.
 
Lenore it's healthy to separate the person from the disease. Of course you don't want Brian to die, but you do want ALS to stop torturing you both! That doesn't even come close to making you a bad person my friend xx
 
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