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Old 06-24-2008, 01:25 PM   #1
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Accepting that less is more?

Hi guys.. alot of you have been thru situations where you have had to accept your MS as being a limitation...can I ask- HOW DO YOU DO THAT?

As many of you know, Ive accepted that I cant keep doing the kind of work im doing much longer; except that I didnt get the job until 18 months ago, it is the biggest thing that ever happened to me professionally, and I got it based on my MBA, which I had to finish a month after finding out I had MS...the job wouldnt have come, without the education.

Now, im facing an interview on Thursday, for a part-time job, where my education isnt key to what Ill be doing...the money isnt bad, and the hours arent either- but the job is a dead end and I know it to be a fact..its a contractor position for only 1 year. My husband is freaking out on me screaming about how Im going backwards..he is really concerned about the paycut, which is going to be drastic...and he is reminding me every day that the school loans which I havent paid off yet, and going to kill us! Actually, my husband couldnt be any LESS supportive of me right now. Its killing me.

But I keep telling myself that with MS, we have limits...and that other people have learned to accept it- why cant I? I dont know how, thats for sure..so, Im asking any of you who have faced this- how do you prove your worth when you feel so entirely worthless?

Nikki
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Old 06-24-2008, 01:50 PM   #2
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Re: Accepting that less is more?

Nikki

You've been extremely supportive on this message board; it's time to get some support back.

After I told my supervisor that I had MS and was going to start taking the Avonex shots he had already had plans to terminate my employment. I was upset but figured I could get another job within a week.

4 months later with Unemployment helping me and landing a temp to hire job and my husband putting me on his health plan I was able to start the Avonex, I was feeling that I couldn't live up to the company's expectations.

I really think the Avonex helped me lose my self worth, but my former co-worker who also has MS called me. I told him my situation and within seconds I was in tears. It was almost like I could cry on call! But after I dried the tears he asked me who was able to do this and who completed the work that I did. YES, I DID IT.

He was able to put my head on straight in thinking I've been in my position for 10 years, and being diagnosed with MS 3 years ago won't take that away from me. You have the work experience that you have and can use it as your strength.

These issues are just additional hurdles that you can get over. You know your limitations but you can still be successful if you stay within those limitations.

Hang in there.

Lisa

 
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Old 06-24-2008, 02:46 PM   #3
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Re: Accepting that less is more?

First of all, good luck with the interview! And of course you can keep looking when you get the job, if you're not happy there.

You know my story very well. I took a substantial "cut" in my status at my new job. I haven't had to answer to anyone but the CEO in seven years, and now I have three people above me. It is more of a challenge than I had originally thought. However, it has paid off big time as far as my health goes. I haven't felt this well in years, and the only constant symptom I have now is fatigue.

It was hard for me to accept my limitations at my last job, but even harder to accept other people's perception of my limitations--most of which I didn't have! This is something I still struggle with. If I run the vacuum, my legs turn to jelly, things like that. I know you know how hard it is to get a husband to suddenly start pitching in. I'm still in the process of learning and accepting my limitations, and I don't see an end soon!

When I feel worthless, and I do sometimes, I remind myself of what makes me unique and special, to myself, the creator, and to others. Your career should not define your sense of self-worth, not at all, and it took me quite a while to learn that too.

A good friend of mine told me yesterday that I deserve an award for doing all the stuff I do while having MS. I think that's true of everyone on this board. MS does not define us, but I know for me, it has made me stronger, and I've learned (and will continue to learn) more about myself than I ever thought I would. MS has made me a better person, in so many ways.

I think our mission in life is to be the very best we can be, with the mind and body that we were supplied with. We have MS, but we are not worthless at all, and we can do a lot of things. Even those who are wheelchair bound, with sight and speech issues, can think beautiful thoughts, give wonderful advice, contribute to the world, and leave this world a better place than how they found it.

As for you in particular, no matter what your husband or your sense of self-worth are telling you, you have lots of worth! Look at how many people you have helped on this board, including me. I think you were the first one to respond to me when I first posted, and I was ignorant and terrified. And what you do on this board is just a small facet of your life. You have lots of worth to me!

Don't think of taking a "lesser" job as taking a step backward. It's a step forward, for your health and happiness. Been there, done that. And you know what the good part is about "downgrading" a job, at least for me? Your new coworkers and bosses will be amazed and thrilled at your capabilities. I've been getting very positive comments from my new coworkers, and the higher-ups are now giving me projects, without even consulting my supervisor! This has been a huge boost to my self-confidence, which was severely lacking, and I know it will be for you too.

I like to think of myself lying on my death bed. What will I regret, what will I wish I would have done, what didn't matter at all? Ask yourself those questions, and you'll get some very good answers.

(Insert four letter word here) your limitations. Focus on all the awesome things you can do, and there are a lot! And please know that you are not worthless at all; there is a girl in Ohio who might not have made it through the beginnings of MS without you.
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Old 06-24-2008, 03:04 PM   #4
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Re: Accepting that less is more?

How much is enough? How much do we really need? How big does our home need to be? How many clothes does one need?

I faced questions, but my health and being there for my family surpassed the need of a nice salary. I shed many of my material things, relied on less money, moved away from the city, and eliminated 75% of my closet.....and I am blessed.

Perhaps you should lay out your situation like this: I can take disability and make the following each month or I can work part-time and make the following. A third choice is a loss of you and your income. If you work yourself to death, who benefits? No one benefits from your untimely demise.

Choices are difficult to make. You will likely have to get out a pencil and start budgeting carefully. Can you manage it? I am sure you can. As to future job prospects, if you are able, please look beyond your area. Is there a need for you to remain where you are? Can you find a good job in a lower cost of living area and move into a less expensive home? You will need to answer these questions.

I moved from a good salary and a nice home in LA to the sticks of our family farm. This is not my final move because we will move again so I can chaperone my youngest son to college in 2 years. Where will that be? Well, that depends on the university that offers him the best opportunity. The house? Four walls and a roof is more than millions around the world enjoy. Consider the many blessings you enjoy.

 
Old 06-24-2008, 03:08 PM   #5
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Re: Accepting that less is more?

April, your post made me cry..thank you for making me realize that I matter. Right now, Im having serious doubts about it...

As for what you actually wrote, I know that you are right. And, I have asked myself that very question about what I would be thinking on my death bed, the scary answer is that I find it hard to answer it...sometimes, I think Ill regret allowing myself to ever feel less than substantial in this world because I know I made an impression on many people...but other times I think that I have no regrets, that Ive accomplished more than I ever knew I could. I also wonder if Ive made the right choice in my marriage.. I love this man more than I ever thought was possible, and Im good to him..but now- when I need him the most, is he really good to me or is it my wishful thinking and feeling of desperation which are allowing me to let him into my head and make me feel bad about myself? He says he loves me- he does do nice things now and then- and he puts up with alot...but, he also makes me feel like Im not the person he married a few short years ago.

I do remember your first post, April..and Im so proud of you for coming so far...youre as good at giving advice as you are at taking it..you have been an inspiration to me throughout the past few months, and is it silly to say "I want to be just like you with regards to my job"? I do..I hope for the very best for both of us..but you inspire me to realize that cutting back ISNT going backwards!

Thank you for being my favorite mirror.

Lisa, I dont know you well, but you obviously know me! Thank you for your thoughts...unfortunately, there is no way that unemployment is going to come into this, my boss has never paid it before and keeps a laywer on retainer just to prevent it from ever happening...as for being able to continue to do my job- its not likely. Im driving almost 200 miles a day, and on some days more like 300 miles.. I see more than ten accounts in an 8 hour day- and take more than 100 complaints throughout the day..I then deal with all of them both in my car and on my commute home and into the next morning..its too much stress, too much driving, too much troubleshooting...my brain isnt functioning at optimal levels, my body isnt cooperating either..and truth be told, I work for one of the most awful people in the world. I need to put this chapter behind me and move on...but admitting that, is really hard. Its especially difficult because my husband is reminding me daily of what I promised him (while I was in school and before we got married) and he is using it to hurt me...that isnt love, and Im more disgusted and shocked then anything else right now....this, from a man who promises he loves me more than life?

But, I apprciate the sentiment behind what you wrote and appreciate that you think Im good for something (dishing out feedback!) that means more to me then you know..

Thank you BOTH
nikki
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Old 06-24-2008, 06:08 PM   #6
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Re: Accepting that less is more?

I'm not going to try to kid you . . . it's very hard to make this change, especially if it still feels you really have a choice in the 'decision'. You really don't have much choice though, and that's probably the only way to come to grips with this . . . even if it does cause anger and resentment.

The very first thing my neurologist said to me was "reduce stress", ie. get out of management. It took me a year to reckon with that advice, and I even tested it again after about 5 yrs of doing really well.

I had been in mgmt for several years already when I was told about the MS, but had only finished my education 4 yrs earlier. I too spent a lot of money getting my credentials, and having to give up my grandious dreams (and pay) was a very hard pill to swallow. In fact, I think reaching that acceptance has been the hardest adjustment I've had to make throughout this whole disease process.

It may be that you have to take something below your capacity right now, just to get away from this job and stress . . . but then you can re-evaluate this again when this contract runs out. Right now the priority is finding something with very little stress, and trying to stabilize for a while.

I think your husband isn't being very supportive, and I wonder if he might understand better if you could try to put him in your position. Yes, it's going to be a financial struggle, but what part of you needing to slow down does he not understand?

Can you reduce some of your costs to make this work? Or, could he go out and find a job that pays HIM more money? That's what a partnership is all about, it's it?

Cherie

 
Old 06-24-2008, 06:53 PM   #7
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Re: Accepting that less is more?

Nik, it isn't helping you that your husband is being less than supportive of not only you, but your disease. It sounds like you are feeling so much pressure to be "normal" and you AREN'T. You have a chronic and lifelong disease. How do you adjust to limitations? I had to stop a job that I loved and basically defined me. Time was all that could heal that wound. I felt less than and unproductive and well, useless. After awhile when life changes, you just eventually change with it. Now my life is much different but full nonetheless. Did I ever think that would happen? Never. Between my MS and my divorce, I felt so hopeless. Life is good it's just different. My impression of you is that you never say die and you aim for the stars. Just because you can't reach quite as far into the sky for the star you want, doesn't mean you aren't you. Your just you with limitations. Your just you with MS. It doesn't have to define you but it IS a part of who you are now. I don't envy your position and especially with a knuckle dragging neanderthal (sorry) that is yelling and demanding. Girl, be who you are but don't let the masses beat you down or up because you can't live up to THEIR expectations.

 
Old 06-24-2008, 08:36 PM   #8
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Re: Accepting that less is more?

Jayhawk, thank you - you always have such a positive attitude and I appreciate you so much...unfortunatley, alot of what you said, cant be changed..for instance, we live in a 2 bedroom condo- and have 5 people living in it on weekends...its only 900 sq feet- cant get much smaller than that....we cannot, by law, move out of state because of my husband's children,who we share custody of...right now, we cant even move out of the school district. Also, due to my husband's job, we have to live within city limits- and when we tried to get out of that legally, we were told forget it...since we are completly dependent on his Union for both my health insurance, and his (pulmonary issues)- we are stuck abiding by their rules..
However, I have actually made the decision to cut out everything and anything which can be cut out...we already gave up our landline phone and cable TV...not sure what else we can live without, utility wise..but I will take everything you said and keep it close to my heart..thank you so much for reminding me of what I do have.
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Nikki
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Old 06-24-2008, 08:44 PM   #9
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Re: Accepting that less is more?

Cherie and Kim..
first, Cherie, I couldnt have said it better myself..you really hit the nail on the head and we are much alike, in professional ways and thoughts...yes, it is defining who I am, this crazy job which I love- and hate...and its horrible that Im letting it happen..but, when I started out with nothing, I told myself that someday, Id be doing this..and now I am...and now, I cant. Not really.

You really said a mouthful when you said that I need to realize that I honestly DONT have a say in this decision..much as everyone around me thinks im superwoman, doing "so well" with the MS- Im not doing as well as the world believes, and its time I started cutting myself a break over that very fact.

The stuff you said about my husband finding a better job and reducing costs..we are working on reducing costs..but a better job is not to be had..he's a Union man thru and thru and a stubborn (what did you call it Kim, neandrothol?!) at that...but the Union is paying an awful lot to keep us both in health insurance (husband has silicosis from 911 demolition) and we are in dire need of keeping those benefits..plus, obligated to stay in this school district, due to his partial custody of his children...however, Im not in anyway contracted to kill myself trying to "keep up" with everyone's demands, am I??

Kim, you put that part into perspective..I know how much youve been thru and appreciate all of what you say...and your absolutely right about your impression of me...I will try to set my own expectations alittle lower, then maybe Ill have the strength to stand up for who I am and what i can do...

thank you both, your insight was very reassuring..
Hugs
Nikki
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Old 06-24-2008, 10:57 PM   #10
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Re: Accepting that less is more?

Nikki~

I have been following your posts and your struggles these last few months and just needed to drop in and share my heart with you!!

You, my dear friend are an inspiration to so many of us here. Worthless is something you are so NOT!! This breaks my heart to hear you in this situation your in. We can all offer advice but only YOU have the ability to make changes and know what will work for you. But, believe in yourself and while making changes, decide what things will be good when those changes are made.

A year ago, I was right in your situation and if it wasn't for you, Nikki, I would have never found the stregnth or self worth to give up my buisiness. If you remember, I was my only provider for me and my kids because it was "safe".

My 2nd marriage was just that. It was a piece of paper. I struggled so much with having to lean on him and not be financially independant. But you gave me the stregnth to let go. That decision I made has changed my life and only for the better!!

I found out that not only was Bob a husband on paper but he "truly" loves and supports me. And now that our marriage is more entwined because we both share the burden of making our financial situation work, I am free!! Free to take care of myself, my family in the way I never could because I was always too busy working, and free from the burden of not being able to open my heart and trust again after my 1st marriage. What a feeling!!

I'm fortunate that I still recieve child support, I sell on line too but the medical bills are piling high but we are both ok with that. We'll find a way because we are doing it together now.

Bob has been my second inspiration next to you. We both realize that when an illness hits, life is precious!! Its not what we own, its what we have to give. I now am at home healing, and always tell myself that this illness happened for a reason. My work and career didn't define who I was. I just hid behind that because of my fears.

Today, i am sick but very truly happy!! I can now take the time to enjoy life, what it has to offer and my family. THATS what matters.

Ya know, when my kids were small and for years after theyr'e father left, we were so poor and had nothing. I used to tape boxes together on my living room floor and we created tunnels and decorated them. I had no money to buy them toys or even the basic necessities. So I strived to pull us out of that hole financially because it was just an awful way to live in my eyes.

Things were so much better financially for the last 4-5 years and I bought my kids everything the're little hearts desired. But when I told my kids I was leaving my job to take care of myself and financially, we would have to give up the finer things in life, I never saw 3 kids so eager to help figure out what they could do without in the process.

They got online and researched strategies of changing plans and such to save money. They told me that they were happier when we were dirt poor because at least then, they had they're mom. Not a carreer woman. THAT puts things into perspective!!

What worries me is that you don't have that emotional support from your husband and instead of trying to find a salution, your made to feel guily. Thats not a good place to be in. You need support, nikki so surround yourself with only those that support your decision to change your situation.

Know that here, you are a much needed force and THATS one reson you were chosen to bear this illness. Because to are so good at helping others make the life changes they need to make. Your just not so good at following your heart and doing whats right for you.

Remember, you are the one with this illness and you have to learn to be a bit selfish. Put yourself 1st because you have no choice. Once you set this in motion, the rest starts to fall into place!!

And I just want to show my appreciation for the way you helped save my life!! You are worth more than you know...

Good luck with that interview. And if this will better your health, go for it Nikki.

One last bit I wanted to share was when I found out my childrens father was abusing them, I emediately went to the courts that day and filed a restraing order to protect them. Because thats what I needed to do. I had no choice. But when my day was over, I cried my heart out!!
I had 3 young children, 2 1/2 to 7 years old.

I also had a mortgage, I had no job, my car was in the garage and not working. My life was a mess but for the sake of my kids, I did it and survived. One day my oldest son and I were sitting outside and life was very poor but was now very peacefull and unthreatened. He asked me why I stayed with they're father for so long. My response was that I was afraid of being alone and couldn't imagine how I could manage financially without him. But If I had to do it all over again, I'd pack you kids up in my car and just drive away. The rest we;d figure out later.

Though this story is nothing as your situation, it was an act of survival. And surviving is what is the most important thing you can own!! So find the stregnth to survive, then worry about the rest later...I did and we made it. And so will you because your strong!!

You'll be in my thoughts. You take care of #1!!

Big hugs to you

Cindy

 
Old 06-25-2008, 04:25 AM   #11
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Re: Accepting that less is more?

Oh My Cindy..First of all, what the heck are you doing typing to me after the surgery you just went thru? I hope everyone who is reading this is as inspired as I am about your courage, your wisdom and - YOUR HEART.

You brought tears to my eyes...I cant believe that Im sitting here reading words like this from my virtual friend who is SO strong and SO smart and So right.

Thank you. I needed to hear this - and hearing it from you, really hit home.

Your story is amazing. I know Ive heard it before, but each time you share more details and prove once again how amazing life can be...

Im scared. I really am...I have let my job/title define me- it seemed like the best thing in the world when I was honored enough to get the job right out of school, and even HUGER that they promoted me within a few months to a Director-ship. BUT I also read your advice, and the advice of those before you and realize that this MS thing is ME, Too. I have to realize that there are two sides to my world. and your absolutely right, I am allowed to be selfish.

It blows my mind how many of you have told me that I made a difference in YOUR lives...Ive always told newbies that this board saved my life when I was first diagnosed...its time for me to change that and start saying "this board has saved my life over and over"...everyone here is so important to me, and so special - I wish I could express how important you all are..

Thank you, Cindy..thank you for taking the time to write what you wrote.
Are you feeling better? Are you up and about? You honestly, have never sounded stronger. Keep it up and know that you have much love in your world..
Hugs and Thanks
Nikki
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Old 06-25-2008, 08:47 AM   #12
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Re: Accepting that less is more?

Nikky,
as you know during last 2 years my life changed a lot. I had 2 lumbar spinal fusions which left me with a lots of disabilities, nerve damages, droped foot and severe pain 24/7.
Now I am being checked for MS and most likely my DR will put me on MS treatments.
I had the most wonderful job, I worked on Wall Street for a big financial Instutions (thanks to my MBA as well). This was a bread winner salary in my family despite the fact that my hubby works very hard.
I wouldn't ever give up on this job - it was good financially, it was good for me mentally and gave me a great deal feeling of achivement.

When after my first surgery failed and my surgeon sent me on disability due not be able to go back to work, I was fighting him, my husband and myself. I asked my boss 4 month after surgery if I can try. Well, I couldn't even make it 3 hours a day, no matter how much I pushed myself. Not much you can do if you can't sit, stand or walk for more than 10 minutes without laying down in a lots of pain.

I cried days and nights. I always was so strong, I had all total major different surgeries in my life, I leave my life with childhood RA - so what can stop me??? I always believed when life gives you lemons - make lemonade. I was plenty lemonade in my life, but I refuse to accept more lemons...
I was so lucky to have my family, my dear husband (my best friend) who supported me so much. I wouldn't be able to do all this without them.

We bought a house 2 years before my car accident (causing me damages and spinal surgeries), so we have morgage payments and like everybody else a lots of other payments. I was so scared; I thought we are going to loose my dream home after working so hard all our lives. My husband said: nobody dies from hunger here, money is not the most important thing in a world, we will survive.

WE made a lots of life changes (no vacations like we used to have), no eating out, renting movies instead of going to see one and so on...
Not easy, but we survive me being on disability and paying so much money for all co-pays to see DRs, co-pays for a lots of medications I and my husband are taking... Humans are much stronger than we think; also I believe in faight.

I also believe in mind and body healing; if you under so much stress and you are so unhappy - what good does it do to you? You many earn the money to pay the bills, but if you get sicker - you will have to pay more money to see DR, for meds...

My hubby had cancer and he has diabeties right now with some kidney damage from it... And he still insisted, he was fighting me to listen to my DRs and to my body... I was stubborn despite the fact that my body is still not functioning because I was scared : what happens to us...
I bet that is what your husband goes through right now: he is scared.

He may need some time to realize that you, guys, will be OK. Maybe he needs to talk to your MS DR to understand better what this desease can cause your body if you are not slowing down and not leaving your life with less pain...

Good luck to you; I hope everything will be OK and your Interview will go smootly....

 
Old 06-25-2008, 12:17 PM   #13
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Re: Accepting that less is more?

Thank you Moldova. I apprecaite you sharing your story with me. Seems everyone has learned how to live with this MS (or in your case, your disability) and I will have to learn too...I saw my Neuro today, he says there is no way they are going to approve disability for me- that Im still too functioning to be considered disabled..however, he strongly urged me to quit this job and move onto something with less stress and less travel...so I told him I would do my best to get this parttime job, for now.

My husband is scared. I know that to be true...and I have taken him to doctors appointments recently, where they tell him that most of my trouble is from stress related stuff- not the MS...but they have explained to him that stress aggravates MS symptoms..he just doesnt get it...its the old "you look to be good to be sick/feeling bad/ have MS" thing...

Im working on putting me first...scared to death to lose what I have- but trying like heck to fight for myself...had a long talk with a trusted friend this morning who put it into perspective when she said "if you have to flip burgers to put food on the table, be the best burgerflipper they've ever had"...I guess thats really it, just doing one's best..
Thanks..and have a great day.
Nikki
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Old 06-25-2008, 01:56 PM   #14
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Re: Accepting that less is more?

Heya Nikki!

I didn't "choose" to go on disability; it chose me.

I went from being a tax atty in private practice to being a corporate tax atty., to a state government atty., to a corporate contracts manager. To home.

Looking back, I wish I could have gone on disability much sooner for 2 reasons: (1) to avoid the stresses that exacerbated my MS and (2) so that I didn't have to watch my career go to hell in a hand basket.

Nothing prepares you for the financial hit; get LTD insurance if you can and you've done all you can do.

Best Wishes to you! All I can tell you is to watch out for #1 -- yourself. MS is a great teacher of self-importance. Learn it now or learn it later.

BTW - my husband has been great, but his way of dealing with things was to gain alot of weight. This is hard on everyone and we all cope differently, but for your sake I hope he soon gets over being so angry. It is certainly understandable, but it makes things worse since it makes you less healthy. How can you say "you're being counterproductive", nicely?

Last edited by jlbrow7; 06-25-2008 at 02:05 PM.

 
Old 06-25-2008, 09:06 PM   #15
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: brockton, ma, usa
Posts: 640
cindys601 HB User
Re: Accepting that less is more?

Hi Nikki~

1st of all, I couldn't resist from responding to your post because I feel the frustration you are going through and also know 1st hand the courage it takes to change.

But you have to look at things as you DID IT!! You made those dreams happen. You graduated at the top of your class. You landed a great job, you were promoted. You made it girl!! So be so proud of what you accomplished!!

But then in the mist of it all, you got sick. And you didn't ask for it to happen, but it did. So, whatever you decide to do from here is not a sign of failure. Its letting go and eccepting what curveballs have been thrown your way.

I know this is probobly the scariest dilema you'll have to deal with. It was for me too. I still think in the back of my mind sometimes that maybe someday I'll have the strength to get back to it. Then I think of reality and if I do, I'll be on a downhill slide again and its just not worth my life or my health.

But just try to keep a possitive outlook as you decide the changes you need to make for a heathier you. Don't EVER think less of yourself because you should be patting yourself on the back for all you've given and done for those of us who were so desperate and came to you.

You are the heart of this board, I hope you know. It doesn't offer a paycheck, unfortunately, but if it did, you would be the most deserving in my eyes!!

Be strong Nikki and do what your heart tells you to do. And in the meantime, I hope your hubby can be a better support in the months to come. But being selfish and putting your needs 1st is something you must do to survive. I know thats such a hard thing to do but I'm rootin' for you all the way!!

You be good to youself because if you don't, nobody else will

Take care

Cindy

 
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