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-   -   What have you lost to MS? (https://www.neurotalk.org/multiple-sclerosis/46604-lost-ms.html)

Victor H 05-27-2008 01:28 AM

There was a wise old man who said to me: "Do one thing at a time, and when it is done, then move on to the next task, no matter how many demands/requests are made of you". He was my Major Prof. My committee members all agreed and said that if there is one single lesson they want to teach, it is that you cannot remain sane when you let the world weigh you down, so you need to learn how to say "NO".

That is one of the most difficult lessons to learn.

The world will survive if you decrease your obligations, because in reality, those obligations are self-imposed.

On a business note, there are students who would love the chance to have part-time jobs that pay cash (i.e. you send them a 1099m at the end of the year and do not have to hire them). Boise State is bound to have a bunch of students who could fill a role for you.

http://selland.boisestate.edu/center-hort.asp
http://www.boisestate.edu/biology/index.htm

Think of yourself FIRST.:hug:

-Vic

Victor H 05-27-2008 01:37 AM

Quote:

Originally Posted by Victor H (Post 287748)
The world will survive if you decrease your obligations, because in reality, those obligations are self-imposed.

I am still trying to learn to say NO, and it is an all-encompassing task.

Type A personalities always have an internal fight going on, and there is never a real winner because we always think, regardless of our successes, that we could be doing better or more. MS makes this battle rage even more.

HOWEVER, you have power.
Power to slow down...
Power to delegate...
Power to say NO...

Hang in there, it is a tough battle, but you will win the war...it just takes a little time...

-Vic

tovaxin_lab_rat 05-27-2008 01:41 AM

Thanks Anne for sharing your story. I know that I am not the worst person with MS nor am I without symptoms either. But after 7 years dealing with this disease, I guess it's finally rearing it's ugly head. Either that or there are other things in my life that are finally on a collision course and I seem to be unable to get a handle on all of it.

Maybe it's that "out of control" feeling I have at the moment. I had a situation recently that put me on the defensive and I didn't like how it made me feel. There was no reason for it other than I felt as if my credentials were being challenged. It was petty and immature on my part and the other person was probably totally unaware of what had happened. I decided to use it as a learning experience. One of my mentors always reminded me that when you stop learning from those around you, it's time to stop doing what you are doing. Of course, he was a flight instructor and he was referring to students, but I think it applies to any field. You can always learn something from students or colleagues if you want to...I felt on the defensive and failed to see the forest for the trees. I wasn't ready to give up my leadership role but realized that sharing might not be that bad.

We all have to readjust. I think maybe I am going through another major readjustment phase, but this one seems to be a bit more major than any one before....I just don't like it. :mad:

Victor H 05-27-2008 01:45 AM

I still have not replied to your original question: "What have you lost?"

1) Mobility
2) Stability
3) Finances
4) Independence

tovaxin_lab_rat 05-27-2008 02:07 AM

Quote:

Originally Posted by Victor H (Post 287752)
I still have not replied to your original question: "What have you lost?"

1) Mobility
2) Stability
3) Finances
4) Independence

I haven't even gotten to that part yet. Fortunately, I think, I still have most of those things... at least mobility, independence, and finances. I am not so sure I am stable, but not so sure I ever was stable! That was the subject of some debate in our house today....:mad:

Victor H 05-27-2008 02:16 AM

Quote:

Originally Posted by Av8rgirl (Post 287754)
I haven't even gotten to that part yet. Fortunately, I think, I still have most of those things... at least mobility, independence, and finances. I am not so sure I am stable, but not so sure I ever was stable! That was the subject of some debate in our house today....:mad:

Cheryl,

If you have mobility, then you are physically stable.

If you can write the way that you do, then you are mentally stable.

If you hear anything to the contrary then it is from someone who is not very observant.

tovaxin_lab_rat 05-27-2008 02:28 AM

Quote:

Originally Posted by Victor H (Post 287757)
Cheryl,

If you have mobility, then you are physically stable.

If you can write the way that you do, then you are mentally stable.

If you hear anything to the contrary then it is from someone who is not very observant.

Thanks Vic. ;)

brandonwall 05-27-2008 03:44 AM

Lets see

My Harley "it was 1 year old when I had to sell"

My Hayabusa racing bike "340 rear wheel horsepower sportsbike"

My train of thought

I think soon my independance

Kitty 05-27-2008 05:52 AM

:hug: Cheryl,

I can totally relate to what you're feeling and experiencing. I had to finally stop working this past April. I had been at my job for almost 15 years. But I knew it was necessary. And I guess I sort of resigned myself to the fact that what is happening is happening for a reason and it's up to me to figure out how to use it to my advantage and find the positive in it. I miss working and worry that if I don't challenge my mind daily that I will become even more forgetful than I already am.

I suffer from fatigue, too, and it's probably the most aggravating symptom I deal with. I went from working a 12+ hour day to taking at least one nap every day. I hate that out of control feeling because I like to know what to expect next and with MS we never know. I try to do things each day that are now difficult for me because I don't want to lose the ability to do simple things like write legibly or fix my son's favorite dinner. These things are more difficult for me to do since I, too, deal with numb hands.

As for the things I have given up:

Financial Security/Stability
Some of my independence

Things I have gained:

A greater appreciation for the small things I used to take for granted.
Time to read.
Time to cook.
Time to enjoy the sunrise with a cup of coffee and the birds.
Time to volunteer.

I don't like to complain about things - and I know you don't either. I don't really consider this complaining - rather, just acknowledging the fact that we are not the same person we were before MS moved in. We're just stating the obvious (to us, at least) and trying to come to grips with that.

For each thing that MS takes away from me I try to replace it with something better. Not always an easy task but at least it challenges me to always seek the positive in any situation. :)

braingonebad 05-27-2008 06:29 AM

Quote:

Originally Posted by Av8rgirl (Post 287742)
I've got a vacation planned in September with my bestest friend, Laurel. Some of you may remember her (Mdolfan). We are going to Wales for a week. That's my goal, to get to September. My sister is going with us. We are celebrating both of their birthdays, one on 9/10 and one on 9/11 (that would be my sister - tough break huh!?!)

I just need to talk this out. Make sure that I am not nuts. But most of all, I want to keep doing what I really love doing -- helping with gardening and landscaping and not lose all this knowledge that I worked so hard to gain.

I know I am not the only one in this boat and, believe me, I am not looking for a pity party here. Anyone that knows me knows that. I am mobile, sometimes I get lost, but I have a really nice GPS now and keep little notes to remind me where I am supposed to be when. I keep a note pad in the car of what I am doing for the day and check things off as I get them done. It's not for lack of memory, it's because I get so tired that I just don't WANT to do them. If I don't do these things, they don't get done.

Anyway, thanks everyone for the support. It's what I need right now. You are the best....thanks. :hug:


I can't promise things will get better for you, but I can say this. I had fatigue so debilitating I could not get off the couch for months. This started in fall '02 and kept up until I got some measure of relief from provigil, even if that was temporary and med induced.

:p

When that stuff stopped working, I was devestated.

Literally, I could move for 2-3 hrs a day, with plenty of rest between activities, until some time last year. And then it lifted.

Lately I have been almost back to a normal energy level, only needing to rest due to pain.

:)

And even the pain is much easier to seal with since I've had these patches, but still, I'm like you - one day moving, one day toast. I get it. It stinks.

I lost my job - my sense of identity, my life outside the house, my friends, my autonomy, my income - first.

I lost my fairly clean house to messiness.

Things have changed, I've lost a lot.

So I know why you're worried, and no, you're not crazy. Slow down when you have to. You'll only hurt yourself ignoring how lousy you feel.

You will find tricks to cope - as you already know. And keep seeking meds to help overcome or deal with these miserable sx. And keep in mind that some of the sx that, while long lived, may not be permanent.

I was wondering if it was possible to die from fatigue there for a while and was surprised that I ever snapped out of it.

:rolleyes:

I can't see you giving up the landscape biz just yet, but paring down that to-do list can't hurt.

DO NOT feel guilty about that. ;)

It's all about priorities.

Less customers when you don't feel so hot, and order your groceries to be delivered - who *likes* food shopping, lol?

Stuff you need to do and want to do go at the top of the list. Take care of you, and the rest has to wait.


And you, Sis and Larel have a blast... I'm so jealous!



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