My epiphany - an aw-shucks moment

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Zaphoon

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I was driving home from my round of work associated appointments today and said out loud to myself, "I feel lousy!" After saying that, I began to think when the last time was that I did not feel lousy. It was over a year ago. Hmmmm....

Then it dawned on me (here's where my epiphany comes in); I have felt as good as I'll ever feel again. My days of feeling great (in body) are gone. I have a progressive motor neuron disease and there is no getting better. Aw shucks!

Okay, some epiphany... This may mean nothing to many but to those few of us with any kind of progressive, incurable disease/disorder, it is a thought to be reckoned with.

Alright, I've thought about it. I guess I've reckoned it, too...

Next topic...:)

Kim
 
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BethU

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Not so fast, Kim . . . I've felt that way a few times. After my heart attack (age 58), I couldn't walk across the living room without resting half way across (and, trust me, it's a small room), and I finally worked out a way to deal with it mentally ... you know, "OK, it is what it is, you're just going to be living at 50% for the rest of your life, so deal with it."

Silly me ... the next decade was the best in my life up to that point ... in work, creatively, physically (I really started working out), psychologically, emotionally. Many accomplishments I wouldn't have even dreamed about before.

Last year, with the ALS diagnosed, I had more ups and downs (way ups and way downs) than I could count, but it was also the richest year I've ever lived, I think, in intensity and depth. ALS really opens your eyes to what matters, and I think I was more alive and aware than I'd ever been.

Which is not to say that heart attacks and ALS don't suck. Just that it's not over till it's over. Don't count yourself out. Even physically ... the heck with the destination ... enjoy the ride!
 

Zaphoon

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Beth,

If I could give any more reputation points to you, I would! You are a wonderful encourager!

I guess what I was trying to say is, I've come to the realization that the strength and movement I've lost is not coming back. I'm not going to get back to 100% and from here on out, adaptability is the word.

I am very adaptable; it says so in many of my annual navy evals!:lol:
 

rose

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Kim, its not over til the fat lady sings :) Time has a way of getting us to our "new normal" as I think Brenda put it, and, having new challenges (for me anyway) actually do open up new avenues for problem solving.

You were handed a huge burden in your diagnosis, but I'll be willing to bet that with time, once you're in your new normal, you will feel good again. You'll learn to listen to your body, and what makes you feel worse, or not worse.

Yesterday I was down by the Hudson River, and that John Denver song:Sunshine on the water looks so lovely, sunshine almost always makes me high started running through my head, and I realized that yes, sunlight on the water DOES make me happy, that there are constants in life that we can't let the bad things rob us of. :)
 

hopingforcure

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Wow what a thought inspiring post Kim.. Awesome.. I really gained a ton from it.. I Was a fitness fanatic, it was a HUGE part of who I was. I defined me.. I completely agree that what we thought was normal and usual has to change. I think what all the posts meant was greatness is born of challenge and struggle.. We must know failure to know sucess. My husband often says for as unlucky as we all seem, we all are lucky to make a Peace with the world and ourselves, we get to get it, so to speak.. Rose your Sunshine explanation make's me agree with him.. Beth your story hit me..
Kim thanks again, you really gave me a chance to sit back and just think, thank you....That deserved a ton of rep points...
 

laurel

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Kim I think you will still have days when you actually feel good again. I have had many moments of discouragement with having MS but like Rose says that as time passes you will experience a new normal. My husband who is a year and a half into his CIDP diagnosis has hit rock bottom with his emotions due to his limitations, but he is now starting to accomodate and adapt and he is beginning to have good days. In the beginning with his atrophied hand and his drop foot, he was really down and just shut down. Now he paces himself, takes rest periods, and knows things that really exacerbate weakness in him and will try to avoid those activities. We have the horses and he would try to sling the hay bales on his own and not ask for my help--now he realizes we have to help one another. We do giggle at times--having found along the way that it now takes both of us auto immune impaired gimps to sling the hay together whereas two years ago he could manage just fine. Listen to Beth and to Rose as they are very wise. Hubby and I are finding great enjoyment during our rest periods as we sit as listen to the horses munch their hay and watch the clouds float by. For sure two years ago, hubby's fun would have been loping around on one of the horses but now he is content with a nice walk. Take care Kim.
Laurel
 

tmasters

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Laurel,

To many euphemisms for me to figure out! Okay, so I know what "roll in the hay" is, and I think I can figure out "sling the hay", but "horses munch their hay" is beyond me. But, hey, as long as you and hubby are having fun... :razz:

Kim,

I don't think I would describe how I feel as "lousy". I feel lousy when I've got a bad headache or a cold or something. I feel great most of the time. Walking is tough to accomplish, but it doesn't hurt and isn't painful. Well then, maybe I've got a pinched nerve after all.

-Tom
 

Zaphoon

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Tom,

Yep, I feel lousy physically. The constant leg cramps and stiffness in my neck and upper back muscles make me feel continually run down. I was at a customer's house yesterday and had finished the job when she walked in the room. She took one look at me and asked if I was alright. I said, "No, I have recently been diagnosed with primary lateral sclerosis it has been affecting me recently."

I wasn't trying to look bad but I also couldn't do much to prevent it. It was on the way home from this appointment that I had this epiphany about returning to full wellness. On the other hand, my spirit will remain indominable and undestructable. Just keep me with a nice supply of cheese and olives and I'm in hog heaven!
 

laurel

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Horse euphemisms <g>

Laurel,

To many euphemisms for me to figure out! Okay, so I know what "roll in the hay" is, and I think I can figure out "sling the hay", but "horses munch their hay" is beyond me. But, hey, as long as you and hubby are having fun... :razz:


-Tom
We have five horses who spend a lot of time munching away the tons of hay we buy every year, and we spend a lot of time stacking, hauling, and feeding the hay. Then scooping tons of horse poop. There is nothing nicer than smelling the sweet hay and wandering down to the barn while they contentedly munch away eating their hay. No euphemisms here Tom. Just a barn full of horses, two dogs, a barn cat, an owl nesting in the rafters--and of course hours of upkeep trying to keep them all fed and happy. We feel blessed.
Laurel
 

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I feel the same way laurel. No matter my diagnosis I can enjoy the family and the twelve cows - soon to be 18 when the cows calve in a few weeks.

I love watching them no matter how dumb they are.
 

laurel

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Just wanted to say Kim that I forgot about the disbelief, anger, and grieving that I did when diagnosed with MS. I think that we all like you so much that we want to offer words that will buck you up and make you feel the way you did before you got sick and then diagnosed with a dreadful disease. But in effect it can seem like we are trying to tell you how to feel, and it can seem like we are offering platitudes. I didn't mean it like that. I was feeling the pain and anguish in your words and somehow wanted to make you feel better with talking about how it can be once you get through that feeling of being blind sided. Don't let us stiffle you with our mothering--just be yourself and understand sometimes we put our big feet in our mouths trying to make you feel better.
Laurel
 

brendapals

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Zaphoon,
What a wonderful thread you got going! Yes, you will adjust to a "new normal", it's not necessarily the easiest thing to do, but it's very worth it, in my opinion.

It's tearing me up inside right now that I can't start IV's anymore. And just a yr ago, I started at least 30 per week. Two patients came in this morning and said, "oh good, you're here, you can start my IV". Just breaks my heart for the patients, I guess I'm more attached to them than I though, huh?

I'm going back to my neuro next Tues, and probably think it's about time for me to slow down on working anyway. That is a tough adjustment for anyone, but I'm so damned stubborn, it's going to be hell at my house for a while. But that's ok, my hubby is healthy, our kids are healthy, we still own more than we owe, even though it still sucks, and I am grateful to be alive!

I'm another one of those farm girls- we have 1 dog, 2 donkeys, and about 36 cows. Lots of limbs blew down in the windstorm yesterday, and it was beautiful to watch. Nothing was harmed, it was just pretty.

Don't stress yourself, you're going to be just fine,
-b
 

Zaphoon

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Laurel,

I always enjoy your responses to postings and view you as another fabulous encourager on the forum.

Brenda, I wish this wasn't happening to you but I've got to say, you too have been quite the encourager.

Rose, who couldn't like what you have to add?

Beth, you often make my day!

Tmasters, Hoping & ktmj, you guys always add so much positive thought and good vibes as well!

Thanks for helping out! We couldn't do this without Al & Cindy!


Kim
 
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sdsyd

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Kim-

Life is like a roller coaster sometimes, isn't it? I am glad you are beginning to accept that modifications and adaptations will have to be considered. I rather like the "new normal" analogy. But I also like Brendas motto of DONT GIVE UP!

Maybe this whole process is sort of like grieving where you can have the DABGA. Denial, Anger,Bargaining (pinched nerve), Grief, Acceptance ( I feel lousy)..or something like that.. any how only you can be in ANY of those or several of them at the same time.

Just hang in there and know that there are many people who consider you a friend and undertand what you're going through. It DOES hurt when someone notices you aren't the same old you on the outside, or when you realize one more thing you can't do anymore.


I am rambling, so Im gonna get to gettin. Sending hugs through cyber space.

Cindy
 

Zaphoon

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Cindy,

Thank you for the introspesctive post! There is a lot of truth in what you've stated.

Oh, and thank you very much for the cyber hug!

Kim
 
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