Of all the things Ive lost due to MS - My MSAA Community

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Of all the things Ive lost due to MS

Allen5280 profile image
33 Replies

I miss my sanity the most!

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Allen5280 profile image
Allen5280
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33 Replies
jimeka profile image
jimeka

Hi Allen, of all 6 years that I have known you as a member of this forum, this is what I have gleaned about you. Firstly you are a very gifted young man, one who can play without music, and make any harmonica sound so joyous. Secondly, you have a deep Christian faith, which at times has stretched you to the limits, but you come out smiling, and stronger. I know this ms can be very cruel, I wish I had some answers for you 🤗🙏

Allen5280 profile image
Allen5280 in reply to jimeka

Prayers are definatly welcome, thank you jimeka . The larger problem is i can no longer smile. I wake up every morning thinking, oh damn not again.

DM0329 profile image
DM0329

HAHAHA 😂

Boy can I relate to your post. Thanks for making me ACTUALLY Laugh Out Loud for reals! 👍

Allen5280 profile image
Allen5280 in reply to DM0329

Hope the shampoo and conditioner is working for ya!

DM0329 profile image
DM0329 in reply to Allen5280

Well, hair isn't as important as "maintaining your abilities" right. Who doesn't love a great ball cap? And, it's nearly winter here in the Northeast.

And, I love love love my once a day Aubagio pill after self-inecting for Avonex for twenty five years. IMHO, hair is sooo over rated anyway! 😅

Morllyn profile image
Morllyn

I have been happy to see your posts over the many years that we have been on Health Unlocked. jimeka has it right, you are a very gifted young man!

Sanity can be lost but can also be found again by following its tracks and sneaking up on it very quietly.🤭

Actually jimeka has it right again , “I know this ms can be very cruel, I wish I had some answers for you 🤗🙏 “

Keep posting Allen5280.❤️

Allen5280 profile image
Allen5280 in reply to Morllyn

Thank you

MsBoo profile image
MsBoo

Hey Allen.. I lost my sanity before I was diagnosed!!!! haha.. You get to a point where sanity is not the norm an more.. if your not silly and goofy, you won't survive!! Mine is the ability to drive.. that went down like a pill with spikes on it...

Allen5280 profile image
Allen5280 in reply to MsBoo

Hello MsBoo .

The loss of the ability to drive is definitely a hard pill to swallow. Its takes a close second especially miss my Harley and it adds fuel to the first! I really miss my Harley, i cried like a baby after sold her... my sweet Josie

2007 HD FXDWG
JTZES profile image
JTZES in reply to Allen5280

I understand how it is a hard pill to swallow. I'm on the verge of losing mine. That will put me on the edge of living or not. I don't know how I would survive with my dog as being my only companion for the most of my time just won't work. I'm willing to break the law by driving without one.The only problem is my wife would make me sell my car. I live in a small town so no Uber

So I really don't need to stick around.

Congratulations on dealing with this loose and the loose of the bike

Your a strong man making it through this.

Allen5280 profile image
Allen5280 in reply to JTZES

I WAS a strong man... now its a minute by minute... that was the first time around 2016.. thrn i could drive again for a couple of years... i also live in a town without UBER or even a taxi... we have a transportation service here but they often times "forget" people snd ive had a few times where if it were not for q goid samaritan i wouldnt have made it home... eith my anxiety i can't use them anymore. Just more fuel to my fire

Kenu profile image
Kenu

Hey Allen it’s been nice to hear back from you lately 👍🏼 Reality can be the shits and it’s tough to deal with at times 🤬 Prayers are with you and hopefully 🙏 things take a turn for the better. Prayers are with you and hope we keep hearing from you 🙏👍🏼😉

Allen5280 profile image
Allen5280 in reply to Kenu

Thank you Kenu

Hi Allen 😊I know what you mean- loosing *your marbles * I've been struggling with cognitive issues myself. But this MS isn't going away. I consider myself an MS warrior

We have gotta learn to deal.🙏❤Lisa💕

Allen5280 profile image
Allen5280 in reply to Sweetheartonvdayl

Ok so how do I deal with... Post traumatic stress, Major depressive disorder, Anxiety disorders, Borderline personally disorder, obsessive compulsive disorder, neurological degeneration and the list keeps growing with every visit??? Im open to suggestions but im more apt to say something very ugly in response due to the overwhelmed place im in

Sweetheartonvdayl profile image
Sweetheartonvdayl in reply to Allen5280

The best you can...I'm sure everyone has issues-like intractable 🎨 pain , CA ect... I've had MS Half MY LIFE. The only thing I can do is take 1 day @ a time ..Wish I can give you words of wisdom.

❤❤🧡Lisa 💕

.

Sweetheartonvdayl profile image
Sweetheartonvdayl in reply to Sweetheartonvdayl

The Hard part of life is 😡living I I believe in God as well as I know you do.

Allen5280 profile image
Allen5280 in reply to Sweetheartonvdayl

I pray every night to not to wake. Sometimes I loose it. Usually a few times a month. The last time it happened when i was not home in my solitude, right in front of my doctor... that was yhe first time ANYONE had seen it happen and i ended up in a psychiatric unit of a hospital. Ut was like a week stuck in purgatory. Now everyone onows and it treating me like im.... well it dosent really matter, im just so very lost, hurt, broken and just hope the end is very soon

Sweetheartonvdayl profile image
Sweetheartonvdayl in reply to Allen5280

Don't ever,ever give up. Boy, I felt the way you do...But, I know people in my life would miss me.Is there anyone you can talk to???

🙏❤️Lisa 💕

Allen5280 profile image
Allen5280 in reply to Sweetheartonvdayl

Sure, i have sone ants and some spiders, oh and a soldier fly around here someplace.... hmmm they are all tired of hearing my crap cause they are disappearing...😂🤣😂🤣 oh wait thats cause its getting cooler out... nevermind that..

Sweetheartonvdayl profile image
Sweetheartonvdayl in reply to Sweetheartonvdayl

Besides a pych.?

Allen5280 profile image
Allen5280 in reply to Sweetheartonvdayl

Part of my problem is i can't .... I dont even really want to talk to anyone. I came back on here because I am trying what i was told to do. I tried the fakebook thing for a few days and it made me loose it all over so i deleted it. I have not been gone from here because i wanted to... its because i write stuuf i never post and eventually got tired if that.. so i sm doing my best to get reconnected ... but uhhhh Im a wreck... thats putting it mildly

Sweetheartonvdayl profile image
Sweetheartonvdayl in reply to Allen5280

WithWhen I couldn't work as an RN anymore, i lost it - my career, my source of income @ my identity!!!Life is not fair, so I just roll

Tazmanian profile image
Tazmanian

I don't miss my sanity because I can't remember it

leking1 profile image
leking1

Hi Allen, it is so good to hear from you! Your post reminded me of a gift from my best friend at least 30 years ago. With my moves and so on, it got lost, and it was something I treasured, She did me a small needlework of some beautifull flowers and the caption, all in the same kind of thread, read " Of all the things I've lost, I miss my mind the most." It was in a simple frame and hung on my office wall at 2 very prestigous colleges/univer. Many a student came/were sent to me because of some infraction/difficulty in completing their Graduation requirements, and that little sign/picture was a wonderful conversation starter about overcoming obstacles, or looking for different ways to do things. I remember your successes! All the walking you achieved was truly inspiring and wonderful. I think of all the wonderful people I have "met" because I have had MS for 42 years, and I am so grateful that they came into my life. You ave each enriched my life by your friendship and fellowship, and I love you, because you accept me, mindless wonder that I am. I've gotten so accostomed to not having a mind, I don't miss it all! I was never that logical in the first place! Allen, please be well, be happy and be loved, my brother. Linda🙏🤗

Allen5280 profile image
Allen5280 in reply to leking1

Unfortunately for me, I am unloveable... if not, i would not be alone. I AM the problem, to which there is no longer a hope or even a dream.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

I can send ya some marbles.. as long as you hang on to them.. You can say you havnt lost your marbles🙂🤗💕🌠

Allen5280 profile image
Allen5280 in reply to Jesmcd2

If it were only that simple.... 😞

greaterexp profile image
greaterexp

Hello, Allen. I hate you’re having such a rough time still.

Raingrrl profile image
Raingrrl

Hi Allen..I’m glad to see a post from you. I’ve wondered how you were doing. I’m sorry things haven’t gotten better. I wish I had some magic to help. The isolation that those of us that live solo deal with certainly makes it all the more difficult. Sending you a virtual hug.

carolek572 profile image
carolek572CommunityAmbassador

My thoughts and prayers are with you always, Allen, and it pains me to hear that you are not doing well. Please be good to yourself. You are loved more than you know, and sanity is sometimes overrated. 🙏

Allen5280 profile image
Allen5280 in reply to carolek572

I made it through the passing of my Dad and Thanksgiving so only Christmas is the next hurdle. l always struggle throughout the holidays. Then the new year is right around the bend. Not that that will bring anything but the same old but I'm trying to pretend it will. Otherwise... well, let me put it this way. When life hands you lemons, lemonade ain't possible without somethin sweet. 🙄

carolek572 profile image
carolek572CommunityAmbassador in reply to Allen5280

I am sorry to hear about the passing of your dad, Allen. That’s tough and it is difficult, especially during this time of year. Yes, lemonade is better with some sweetness! :-D

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