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Lkaibel

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That is what this forum is to me. I am happy for any constructive, supportive things I can do for others but I honestly just love how I can say what I mean here about my own life.

People ask me how Brian is, bless their hearts. I appreciate it, and I say he is okay/stable. I may change that to " as well as can be expected". He is progressing, he is very sad, we might do a trial and maybe just maybe Radicava if that pans out. He can still be on his own while I work but is sad to be so. He is bored and lonely I think and would really be going nuts if it were not for our animals.

Brian can do less and less and that is sad as h2$$! That's that truth.

My mom had a bad fall three weeks ago and lay on the floor of her apartment for 36 hours because she forgot her Lifeline alert. She is 81 and remarkably broke nothing. She is however in rehab, doing well, and due to be home in about two weeks. So that's good. Meanwhile I am running around seeing her and dealing with her cats in addition to all my stuff at home and at my full time job. I wish I had time to be tired, hey I did find time to get sick myself!

About three weeks ago, I got a cold. I am still coughing and bring up phlegm - gross but nothing that has not happened before. I will give it another week or two and go in if I still have it or it gets worse. My last bout of this was 3.5 years ago and went on six weeks in spite of antibiotics. It's just another thing to deal with.

Last week, we went to our beautiful North Shore, stayed on Lake Superior which we love to do. It was really nice. It was also a lot of work with a husband who needed more help. I also could not entirely stop wondering if this was the last time. The season is ending here in Minnesota, and it's not looking so good for us for next season. How was your vacation? People kindly ask. Great, beautiful weather I say. It was also sort of hectic. It was also bittersweet.

I really try to enjoy the moment, I really try to help Brian enjoy the moment. I wish we could both be more like those boundlessly joyful people from ALS books. I see us more like a Norwegian author who wrote "Rowing Without Oars". She was in her late 40's with a successful career in journalism and young kids at diagnosis. She was not depressed, but quiet and stoic. It was what it was. That's more like us, mostly.

I have a feeling that I have a date at some point, when I can get someone to be with Brian for a night (lol, my mind just went somewhere naughty) where I check into a hotel room and just lay on a bed and wail and luxuriate in some serious self pity. What was once contemptible to me not sounds like a big treat. Hats off to the pity party!

I vascilate between thinking "how dare anyone have expectations of me, my husband is terminal for freaks sake" to just continuing to put one foot in front of the other, not wanting to be " different". I think of the lyrics " Take a good look at my face, you'll see my smile looks out of place, you'll see the tracks of my tears". Except those tears are mostly unshed. Except between mom, job, and husband I feel like if I stop the world will fall off its axis.

So another big glass of water, new box of Kleenex. Get that good nights sleep, take the vitamins and forward march. Thanks all for helping me march.
 

Narrowminded

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Lenore that was very well put. About how it goes. We are those busy people whom others ask/need to do things because we are the ones who get it done. However, we are also the ones who need that night in the hotel room.

Hugs to you my friend,

Sue
 

gooseberry

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You said it well.
 

soonerwife

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So sorry that things are rough... I am glad mom didn't do any damage. So scary. I completely understand bittersweet. Being sick stinks... You feel bad but still have so much to do. Reminds me of that commercial that says moms don't have time to get sick. HUGS!
 

affected

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Lenore I've been thinking of you the past few days and I'm so glad you have started your own thread - indeed a place to speak your own truths. No one can understand and we don't want anyone else to walk these shoes either.

I've often still find myself quietly hum or singing ... if you look closer it's easy to trace the tracks of my tears, I need you (need you) then I usually have to take a quick breath and stop. I did a little gasp when I realised you were quoting that same song.

I'm glad you have your own thread now - we can't make this stop, but we can walk along with you xx
 

Lkaibel

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Tillie that is amazing in the song!

Thanks everyone. I am laying here at 6:00 am wondering how I will get up and get through it all, but I will.
 

Narrowminded

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Lenore - you got this!! Remember one minute, one hour, one task, one day at a time.

Hugs,

Sue
 

affected

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Yep on minute at a time, even one breath at a time when needed.

I should also say I make myself sing happy songs as it can get you through one more minute sometimes ....
 

Atsugi

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Loving this thread. Really relating to it. Thanks.
 

4tloml

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This is the place to speak it and be completely understood. You voiced it all so well. Hope you can cut yourself some slack with the cold that's hanging on and just do the absolutely matter-of-life-or-death essentials. What you accomplish already day-to-day and week-to-week is amazing.
 

Lkaibel

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I hope eventually I can use this wretched experience to somehow help others.

It's funny, last night I was sitting on the couch, trying to watch a documentary on Vietnam and my mom was calling from the rehab saying no one would answer her call light and she wanted to go home right now. Talked our way through that. Then my work email pops up and a manager is losing it with her workload.

My take away is that somehow I need to be the calm in storm. ME lol.

Up and at it for another day of work, making meals, putting out fires...

Brian officially needs help in the shower now ( he gets too sore and tired doing it himself) and with vitamin container bottle tops. Looks like he is getting into the study for sure. Hope it goes well. Yikes it sounds like more work. Now that's positive thinking right? :/
 

soonerwife

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Sounds like you were able to be their calm in the storm... I am glad that Brian is definitely in the study but yes more work. Everything is...
 

Narrowminded

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Lenore - I hear you loud and clear with trying to be the calm for everyone when we are flailing around ourselves. It's curious how many similar issues. Work items, parent items...

So happy you got into the study. Sending you strength vibes as you continue.

Hugs,

Sue
 

affected

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I was the calm in the storm - everyone would tell me how amazing I was and what a job I was doing.

I felt like I was floundering and just bumbling along from one day to the next.

That's how it works, reality v perception.

Hugs to you as you watch the monster creeping along a little more each day.
 

Manhattanite

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I agree with Tillie, I was also the calm in the storm. My SIL says the only time she saw me lose my cool was when I was rude to the ALS Org representative at our Clinic (both she and her organization were truly useless and I told her so). But I certainly wrote many times on this forum about my frustrations, which no one else got to witness.

As CALS we have no choice. What are we going to do - lose it completely? Abandon our PALS? No, we have to keep on going as everything changes around us.
 
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