Wrong state of mind

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Papa_Bear
Regular Member


Date Joined Feb 2006
Total Posts : 93
   Posted 9/20/2006 5:16 PM (GMT -7)   
Hello all,
 
Pardon me in advance for just jumping in with both feet but here goes. I was dx'ed a year ago, counting the ON that lead to my dx I have had three total flair ups. An ON in the other eye and most recently one leg quit working and the other side of my body became numb.
 
MRI's show lesions on the brain, c-spine and t-spine. The first eye came back 100%, the second eye came back to about 20/50 with correction, the legs are both working and the numbness has subsided a great deal.
 
I still work 5 days a week, take care of my wife and kids. Heres my problem, somwhere on this journey I accepted that I am going to lose my vision and most likely the ability to walk. no logicly I understand that this is an unreasonable thing to accept. No one can predict the course this will take but I somehow have decided how its going to be.
 
Now while I keep on doing everything I've always done, I walk around each day wondering if today will be the day it changes. I'm not being fatalistic or anything. I know even if those things happen life will go on and I always trust that God will take care of my family and myself.
 
I don't know why I am writing this really, I suppose I am just wondering if anyone else has experianced or is experiancing this. If so, how did you or are you dealing with these feelings?
 
Thanks for letting me vent.
 
Take care all,
 -Pete


"If you don't talk to your cat about catnip who will" - CCL 

Post Edited (Papa_Bear) : 9/20/2006 6:26:40 PM (GMT-6)


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 9/20/2006 6:24 PM (GMT -7)   
My heart goes out to you Pete. You really do have a lot on your plate, taking care of the wife, the kids and dealing with all the MS stuff too. I hope all of you are doing ok btw? I'm sure you do a remarkable job of handling everything you do! The feelings you are experiencing are bound to pop up once in a while, the uncertainties and wondering about what MS "might" bring. It's hard not to wonder about those things! You already know I'm sure that those things you fear might happen might also not and it's easy to say don't worry about them unless they do. As for us, we just take things as they come, one day at a time.
 
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uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 9/21/2006 3:23 AM (GMT -7)   

Yes, that's the real challenge of this (and other) chronic disease -- it is very uncertain how it will affect each individual, and there simply is no way to predict it's outcome.

I just take each day as it comes. I do what I can with that day, and plan for tomorrow, knowing that maybe I won't be able to carry out those plans -- and not beating up myself too much for something over which I have no control -- the effects of MS on me.  23 years ago when I was diagnosed, I didn't dream I'd even BE here, 23 years later.  It took me awhile to come to accept the uncertainty, and just let it go...it was out there, it may happen..and whatever did happen, we (my husband and I .. we have no kids) would deal with it. And so we have.
 
Take care.  Give your wife and kids hugs.  You're doing well right now.  Best you can do is try to keep your financial affairs in order, keep paying for health care, and go about your day.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/23/2006 5:38 PM (GMT -7)   
Hey Pete

I hope u'r feeling better tonight. Things are truely so uncerntain with ms. Tho i don't have a dx of anything, i can certainly relate to u'r not knowing. I don't know how i'm gonna feel from one day to the next, but i 'expect' to feel ok. If i dwell on the chance i'll feel bad, then i usually do if for no other reason than my mental state is 'down'. No, i'm not saying u'r dwelling at all. U seem to be moving on and taking care of u'r family and life very well. U have every right to feel as u do tho. U DON"T know what tomorrow brings. But, u DO know at the moment u feel how u feel and u can do all u can do right then. Enjoy it all and don't wait for it to "happen to u". As Kimber and Uppity have said, take it day by day and enjoy each day for it's own value. I hope things are looking up for u Pete and i will keep u in my prayers.

rhonda

Sandy C.
Regular Member


Date Joined Feb 2006
Total Posts : 129
   Posted 9/23/2006 10:21 PM (GMT -7)   

Hello Pete-

I am 25 years old, single homeowner with no kids. I work as an RN. After being diagnosed I found working full time with 13hour shifts was difficult so I cut to part time and use the extra time to continue my education. I am now getting married for finacial reasons. I find the bills overwhelming and the fatigue is getting worse. I am marrying a man I have been with for 7 years on Oct 14th =). I will graduate in Dec with my BSN and will start next fall on my Nurse Practioner. Eventually I want to have my PhD and teach at a university level. Throughout my life I have dealt with stress by planning for the future.

With the unexpectness of MS, planning for the future has gotten really hard. I just don't know what tommarrow will bring like I thought I did when I didn't have MS. Sometimes I wonder "will I be a 'safe' NP with my ms?" due to memory problems I can have. With my fatigue I wonder if I could make it through the rigors of getting a doctorial degree...Oh yeah, and I want to have kids but will I be a good mom??? There is a lady at work that is just bitter towards me, talking to her I found out her grandmother had MS and her mother HATED her grandmother because of it. Her mom felt that gma wasn't a good mother and only cared for herself!

How do I deal with this? To be honest I don't think I deal with it very well. I feel like the worst is coming and I need to expect it but there is no way to prepare for it effectively. At times...and I hate to say this... I HOPE for the WORST to happen so then I could move forward and know what I have to work with. I know this isn't going to happen. In real life, I take it one day at a time. I go to work when I can. I write papers and attend class when I need to. I am marrying a man that has been with me from good times to bad, my estate is in a trust, I have a power of attorney written, an advance directive, and a will in place.

Pete, I understand where u are coming from and I wonder what those have done to effectively deal with MS. I think we are all diffrent in ways of coping, but u asked what I have been doing so I told u =)

Sandy C.



Sandy C.
Diagnosed with Multiple Sclerosis September 2003 currently taking Copaxone SQ QD, Aricept 10 mg PO QD, Welbutrin XL 300mg PO QD, and Provigil 200mg PO BID.


Papa_Bear
Regular Member


Date Joined Feb 2006
Total Posts : 93
   Posted 9/24/2006 11:39 AM (GMT -7)   
Thank you all for your responce.

Sandy, I think you hit the nail on the head. I feel like I wish whatever was gonna happen just would instead of the dread of it haging over my head. then I could go on with it in whatever capacity. Its the not knowing, the uncertinty.

As I grow older, and I am still very young, I crave more structure, more order. I always try to plan ahead. Take a coat it might rain or get cold, jumper cables in the truck, that sort of thing. But this is an unkown. The chance of losing vision or mobility is there for everyone but for those of us with this illness the odds are greater.

I just feel the looming threat. If it were to happen I could and would and will deal with it. Its the waiting. The waiting is whats hard.

Good luck to you all and God bless,

- Pete
"If you don't talk to your cat about catnip who will" - CCL 


photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 9/30/2006 1:04 AM (GMT -7)   
Hi Pete.
 
I can see where you are coming from when you say "the waiting is hard".  Personally, I'm trying to take one day at a time and not think about it.  Sometimes easier said then done.
 
To me, the worst thing would be to end up in a really bad way from the MS (like my uncle who was completely paralyzed) and have all the time in the world to lay there and wish I had done more while I could and fully enjoyed everything I could without worrying so much that it could be taken away someday.  Chances are, the worst won't happen.. but you can't get the time back that was spent worrying.
 
Just my 2 cents.
 
Shar
If it's meant to be, it will happen

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