Noidy,
You have new friends here and we know what you're going through! :) I used to say I wanted to be back at my pre-kids weight, well.. I guess I found a reason how to do that just not the way I planned. More and more I'm learning to adapt since this is all still new to me. I guess the hardest part is I'm definitely a type A personality and letting go of some of my control is very hard to do.

Monique

Flygirl, my friend,

I am not going to list the things lost here on my end. You already know what they are.

It's funny that you should write this post at this time. I was looking at the pics of the MW GTG and the thing that first struck me about myself in those pictures was how incredibly TIRED I look (nevermind how much weight I have gained!). Add that realization in to how long it has taken me to recuperate from the whole thing and it's like getting a slap in the face all over again as to what this stupid disease takes from us all.

I don't have any good advice except to rest more and do what you can, when you can, and to let you know that I'm here and hugging you and mourning with you for all the losses.:hug:

I think maybe I'm not alone in this, yanno? Coming here and letting it all out is more like this! :grouphug::grouphug::Crowded::grouphug::grouphug:

sandy makes a good point trying to slow down or pace oneself, which is easier said than done, but it is very important, but i also must agree with what your thread is about. I use to be able to walk many miles a day, and I cant anymore, and yes it does get the best of me and upset me

Cheryl all I can say is that it has changed my life completely.

You know all the problems that goes with it.

With my dh passing 2 yrs. ago sx have been worse. Maybe it is
depression that is getting to me. I don't know.

The past 3 months the fatigue has been bad. I just can't find the
energy to do so many things. Wanted to get things in my flower garden
done before the heat came, but the weather has been crazy, now today
summer has hit. Went outside for about 30 min. had to come back in.

Stay in the house in Winter****Cold
Stay in the house in Summer****Hot

No happy meeting

You rest and realize all the good you have been doing for MS
Split your priorities up. Tomorrow is another day.

I should take my own advice :D

Jappy :hug:

a bf of 17 yrs. lol
a job of 36 yrs.
use of a lot of my legs and hands - most important of all...

but not my sense of humor:) and my love of life.

I don't know if this was meant to be funny or not but if you read it the way I just did you'd all be ROTFL. :ROTFLMAO::ROTFLMAO::ROTFLMAO::ROTFLMAO::ROTFLMAO: :ROTFLMAO:

:circlelove: (((((((((((Cheryl))))))))))) :circlelove: Bless your Pea picking Heart..:D

That's the horror of this %$#@$ disease....It chooses to strike us during the prime of our lives and dwindles us down untill we have little of our old selves left.:mad:

Am I a little bitter...Nahhhh..:rolleyes: :D I am thankful, like Cherie says. that it happened to me slowly over the years and I was able to lead a fairly normal life until it hit me again in my 50s....then the bottom started fallin out and I sort of lost all the big stuff, like walking, running, driving, bowling, partying, strength and youth, over the last 10 years.

You are still one of my heroes, Cheryl..I just know things will get better for you soon..:hug:

Dear Koala,
 

This is one of my biggest fears. I am expecting my first grandson in August. I fear I am not going to get to be the Grandma that I want to be. But I will do my best. A lot of what you said hits home! :hug:

~Friend

OK Cheryl..Don't let this go to your head or anything (:rolleyes:), but I've always admired you. You've always seemed so strong, even if you didn't feel like it, and have helped others stay afloat thru their questions and fears of this disease thru your words..We've all lost something to the MonSter, but we've all gained something, too..
(((HUGS)))
...Kris

Cheryl,
 

Bless you heart... sometimes it just gets to be too much. :hug: It's not fair...anyway you look at it. Darn it!

You are in my thoughts and prayers. :smileypray:

~Friend

Originally Posted by Koala77 http://neurotalk.psychcentral.com/im...s/viewpost.gif
The list goes on and I mourn for the loss of my career, but the thing that hurts me most is my grandbaby.

I have a beautiful grandson, and I'm too frightened to pick him up in case I drop him. The thing I hate the most about this rotten disease is not being able to be a normal, cuddly grandma, like most grandmas are. :(


I cried and cried when my first Grandbabies were born, because I knew I could not be the Grandma I had hoped to be.......but, I am still a Grandma and am loved by my GKs.

They come to see me every week and give and get all the loving they need. I pick them up all the time, but I make sure I am sitting down. I've never dropped one yet. I enjoy them all so much and I wouldn't give up being the kind of Grandma I am now, for anything.

Make a deal with your Kids to bring your Grandbabies to visit as often as they can. Sit down on the couch and hold them in your lap...feed them talk to them and cuddle them. Keep some toys and coloring book around for when they are older. They will love to come to see Grandma and Grandpa..:D

:hug:

i have only lost what i have allowed MS to take from me...

which at times seems like pretty much everything..:rolleyes::mad:

but i will not give up this fight that easy... heck just ask my ex wife how relentless of a fighter i am..

This am serimous stuff. Yer not supposed to make us laugh..:D :hug:

As I read everyone's replies, I realize that I have more than I have lost. I have a wealth of friends, support, and so much more from all of you that I cannot even begin to thank you.

Today as I was "overseeing" a landscape installation, my client asked me how I was doing. I've known her for a while and I honestly didn't know how to answer her. Emotionally? Physically? Mentally? Financially? (a check would be nice! LOL )

I realized that I have been sick since December...literally. This all started with a sinus infection and I have not been well since the first part of December.

Each and every one of you has made some very good points.

I too have lost a lot of weight...22 lbs in the last year, but over all, 70 lbs. But I gained a lot the first 2 years, but I am down overall 20 lbs. Not bad.

I have lost friends. These are people who cannot handle the fact that I cannot do what I once could do. Their loss.

I have gained friends, very good friends.

I have gained a healthy respect for life...although I had that before. When you survive a plane crash, you gain that respect!

I have lost sleep, lots and lots of sleep. It's too bad I can't be productive during these sleepless hours!

Skills I can add to my resume --- bladder control (not incontinence but I wanna pee....;)), correctly spelling medications I never knew existed, the proper procedure for lab tests, how to tell off an insurance claim processor, how to get medications I need not what the insurance company thinks I need, how many vials of blood it takes for each clinical trial appointment, how long a nap I can take for a contrast MRI....

I've been to DC to testify in front of the FDA, be on a panel FOR the FDA, attend a Public Policy Conference as a Rep for the NMSS, volunteer for the NMSS Society, BE a LAB RAT, I got to ask a US Senator what he's done for medical research!

Maybe being dx'd with this disease has been a blessing in disguise for me. I've had some very exciting things happen to me; I've met some very wonderful people (and will be meeting some more); I had opportunities that I probably wouldn't have had otherwise; but the cost...at least right now is taking its toll on me. I am tired...in pain...and just need to take my own advice and slow down.

Thank you everyone...keep the posts coming. I know that you are helping me so you have to be helping others. :hug:

And Greta...yes I do need a raise...wanna buy some trees???? Anyone????

:hug:

Can I add to skills gained, one that I never thought I would have?

Squatting over the loo with a torch, a mirror, tube of KY and a plastic catheter and actually get urine to flow into that toilet basin??

I think that one deserves a big Hooray! http://i99.photobucket.com/albums/l3.../party0036.gif

I mean.....how many of your friends can you boast to about that achievement? :winner_first_h4h:

ME ME ME ME!!!

That was one of the first things I learned even BEFORE I was diagnosed!!! LOL!

PS...I hope your 'torch' is the same as our flashlight! Torching "downunder" would not be something I would enjoy nor brag about!! :p

With my MS diagnosis, I was finally able to find support, and friends. Thanks for pointing that out Av8r. Without my diagnosis, i felt lost. Now i know where I belong in the world, and that has given me so much back that I thought was gone forever. Whatever I lose in the future, I can face it knowing that I have support, and most importantly friends who understand. That means the world to me.

You know what, that is one very important lesson I have learned. I have found out who my friends are over the past few years. I have gained some very good friends and found out that a couple of people I thought were good friends, were not. That was the hardest pill to swallow.

Fortunately for me, my dx was quick. I thought the hardest part was telling my classmates. At that time on that day, it was.

I did giggle when I worked this one out, and yes! Our torch = flashlight in your country! :D

See what you have done Cheryl. You are an inspiration to newbies that
even with this disease you can still be a remarkable person. :)

:hug:

Cheryl, first off you are such a strong woman and I admire you!

As for what I have lost, I'm not sure I would call it "lost". I lost a marriage because of MS, but that in my eyes is not a bad thing. My ex couldn't deal with me when I was sick. He was a great guy and dad but not a good caretaker. In his mind I was faking it and if I went to the gym I would get better. Ha!

I think I have gained a better love for life! Also more independence, if that makes any sense. I have bought myself a house, am raising my 11 yo son, and I'm doing it all on my own with no help from the ex.

So I guess in one way I have lost something but I think I have gained so much more!

Just wanted to check to make sure, FG and Koala remembered to put out the torch and wash their hands..:D

Sally...you are one of the "goods" that I have on my list!!! I love your sense of humor!!! Thank you for being you!


:hug:

Well, FG, I've been bypassing this thread because I refuse to count my losses, it's an attitude thing.

Your post about counting the gains is more my speed. No, I'm not the one that no one, including kids, can keep up with anymore, I'm no longer obsessed with downhill skiing or softball tournaments, and I don't expect to ever climb and camp a mountain again. But, I cannot dismiss all the things I've been able to do, and the people I've met because of the MS and that is where I find my solace.

It is amazing to me, but I'm actually at peace with having this disease and I continue to do whatever I want to do, as soon as I figure out how to do it.

So, on goes life, sink or swim.:cool:

Hey Cheryl~~ Just wanted to let you know of one thing you HAVE gained on this wacky road you've been on>>>>> ME
and your road trip to TH memories!! :D

I'm a Type A personality too, and slowing down or delegating duties just isn't in my vocabulary either. But, I'm trying so hard to learn that I have limitations now.

You have pushed yourself so hard this past yr, while also volunteering to be a Mod here to help all of us. For that, we are thankful. :hug:

Take care of yourself Cheryl~ We only have ONE FG!!! :hug::grouphug:


You are a very special person and friend.:hug:

hi cheryl,
i can totally relate to your fatigue and getting ADL's (activities of daily living) done while working.

i was an RN for 35 yrs. i planned to work til i could pull SS.
then i got dx'd. i had been having sx's for some time but of course didn't know it was MS.

my fatigue became worse and worse. i was working 12 hr days with sick and premature infants. most under open (heated) warmers. that was a killer.
i wouldn't be able to do a thing on my days off.

finally i came to the realization that i had to quit my job. nursing was my life, my identity. i really grieved the loss of my job.

with it i lost friends, or people i thought were my friends.
i'm single and take care of myself.
i've lost mobility.
i've lost financial security.
my future is uncertain and i hate that feeling.

however, i adapt as needed. i can still walk with aids. i can still drive. thankfully it's my left leg that's bad. i'm still independent. i live with MS so i've learned how to live with MS. i've learned a lot of things. a lot of what i've learned has been from you.

i was really given a lifeline on the boards and you were a part of that.
i've learned how to say no. how to teach others about MS. how to take care of myself.

i'm sorry for what you're going thru. i know as your path becomes clear that you will find a way and learn to make adaptations. you've got the smarts and the spirit. you go girl! :hug:

one thing i have noticed and respect deeply is everyones sense of humor, it seems as if we are all nuts and crazy as far as humor is concerened, thank god:eek:

When I started this thread, I was pi$$ed off at what I was losing - work, flying, and a couple of other things. But as I have progressed through this thread, I've realized that I have gained more than I have lost.

You know that I have had a pretty tough time since December and maybe it's just a long MS relapse or just a long roller coaster ride I've been on, who knows. I've never actually sat down like this and "put it out there" for discussion b/c either I didn't want to or I didn't feel safe enough to do it. I think more the latter than the former.

Life goes on. There are things I miss, but I think some of them are due to the loss of the friends I used to do them with and not necessarily b/c of MS...hopefully that situation will be rectified in the near future!

Sink or swim? I am not ready sink yet...let's float!!!

:D

Well, now that you mentioned it, I have the rope, innertubes and cooler. All we need is a current river. :D

Got lots of rivers in Idaho!

I am doing ok today...you guys are my lifeline...

I've lost the ability to work and play outdoors when it's warm. We planted grass over my 12x30 foot veggie garden several years ago. I could get it planted in the springtime but as soon as it got warm it would get overgrown with weeds since I couldn't go outside to maintain it. Now I doubt I could even get it planted!

I've lost the ability to multi-task, and even the ability to do any task at all if I'm in veg mode!

My high energy is a thing of the past as well. Being a type A+ personality living in the body of a 90yo woman is frustrating.

It's all I can do to make it into the office four days a week; that's hard for a workaholic! I've lost my patience for chronic whiners. (Especially if it's coming straight at me and I can't get out of the way!) :eek:

I think about the possibility of SSDI and it makes me sad. I haven't been in the workforce for that many years. I was hoping to work into my 80's like my Dad did.

I went through a period of feeling very vulnerable and helpless for a few years, but I gained something new and unfamiliar to me: a backbone!! :grin: I learned to stand up for myself and for issues I consider unfair. That can be painful at times but it always seems to net good results so I'm assuming I only use it at appropriate times. That has improved my marriage a lot, to name just one benefit.

I have an even greater appreciation for my family and friends. Living with this, and losing several of my loved ones over the years, I try to not sweat the small stuff anymore and focus on the important things.

I realize that I'm imperfect and that's ok, I don't need to be the best at everything. My personal best is ok by me.

Hey Cheryl, my hortoculturist(sp) buddy. This year, I really really hate that I can't get out and play in the dirt. :mad: I guess it's because of the great spring weather we're having.

So, I guess, I am missing my ability to get up and down and walk and just do it....Frustrating....Bah!!!! I wish it would snow..:D

I can't wait untill you get better and can get out there and do what ya can, soon, dammit, and show me pictures..:cool::p:D

EDIT: Well, Wiz, dang it, you and I must have been posting at the same time. I could have just dittoed your fine post..

You know, Wiz, that's one of the things I gained soon after my DH died. I had to - or risk being chewed up and spit out by those who counted on me being spineless and timid.

Once I was given my dx of MS I seemed to regrow a little of that backbone I had acquired a few years before.

Being on my own and having to make decisions about my health and my financial security all by myself was an eye opening experience - but I'm a better person (and smarter, I hope) because of it.

I have gained a wealth of knowledge, patience and compassion in the last few years. Not sure I would have had it not been for the dx.

So....I'm not sure that MS has taken away anything from me that I have not replaced with something better. At least that's how I'm going to look at it. :)

:confused: whuh? :confused:

:Hum: :Scratch-Head: Whuhz whut, AMN? :picknose: :confused:

:confused: whuh? :confused:!!!!!!!!!!!!!!!!!!!!

I guess I meaned I aren't as good at things as I use to be. :wink: Don't make me think AMN, it's late and it's Friday, my poor little pea brain is resisting!

Wiz said 'pea'! :D

Peaple keep saying the "p" word and I'm not going to need any meds, I'll just be collecting wine! Suits me just fine!!! :p