can't accept life changes

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Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 7/6/2008 9:21 PM (GMT -6)   
Hey,
 
After all this time, I still can't seem to accept the fact that I have MS.  I know my life can't be the same in my head, but I still over do.  I've been sick for 3 years and had to wait 2 years to find out why.  I am now a year into MS and I still have the thought "If I ignore it, everything will go away."  One of my friends mom has MS and he is pushing me to sit down and talk to her.  He wants me to take him up there and spend time with her.  She said she'd help me set up with her doctor.  My neuro is no longer practicing due to health problems.  If I am being totally honest about everything, I'm afraid to go talk to her. I've read all the information on MS.  I know my MS won't be the same as anyone elses.  But I can't seem to wrap my brain around the fact that I will never get any better than I am now. 
 
In the last 6 months, I have gotten worse.  I am now down to working 5-6 hours a week. My husband has to change jobs cuz I can't pull enough money in from my job to cover the bills I used to pay with my check.  His new job pays more, but he has to spend more time on the road working.  He is doing this so that I don't have to work as much.  I feel terrible that he has to do that, but he likes working in the oil fields. 
 
I need help accepting that I have MS, but I don't know how to do that.  I have done everything I have been told to do by my doctors, but I still don't believe that there is something wrong with me.  Any ideas?  I am at a loss here and I feel like I'm drowning.  Help
 
Heather
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  Starting Betaseron for MS
 
co-mod for Fibro


casinokid80
Regular Member


Date Joined Mar 2007
Total Posts : 46
   Posted 7/6/2008 10:24 PM (GMT -6)   
im far from a doctor, but its sounds like you are having anxiety from accepting that you have ms. 
Obviously there is pills for that.  Some of the best relief i find are pretty self explainatory, eating well, lots of fruit and veggies.  Exercise, like walking a mile a day (if its not extremely hot), no alcohol (im still workin on that part). Also vitamin b complex is usually recommended by doctors, as most people with ms have a lack of vitamin b. im reading online that coffee can help too. Stress they say just makes it alot worse!!  I have bad days here and there but im overall feeling alot better then i used too.  Figure out ways to relax.  As talking about it on this forum with others seems to help me also.
 
Remember new and better treatments are still being tested every year.  Try to hang in there and not stress yaself out!  Im optomistic with the advance of medical technology, it will get better for everyone with MS.
  

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 7/6/2008 11:15 PM (GMT -6)   

Hey Heather,

You are dealing with the most difficult part of being chronically ill.  When we find out we are ill, we progress through the same grieving stages as someone who has lost a loved one.  It goes something like, shock, denial, anger, bargaining, depression and then acceptance.  Everyone progresses through this at their own pace and as long as you don't feel stuck then you will eventually get to acceptance.  At anytime during this process you can go backwards before going forwards again.  And once at acceptance, you don't always stay there.  You can slip back into any of the other stages usually for a short period of time. 

It kind of sounds like you are stuck in the denial stage.  You may need to talk to a counselor who is familiar with these stages and how they effect the chronically ill. 

You may want to purchase a book that has helped others.  It is called MS and your feelings.  It was written by a therapist that also happens to have MS.  The author is Allison Shadday.  You can order it on amazon but my local bookstore had it in stock so maybe yours will too.  It was a wonderful investment for me.  It asks that you do some work through journaling.  I took that really seriously and I even had a good friend read my journal entries.  That kept me honest and made me really think and make complete journal entries.  This is not an easy process so be kind to yourself.  Also try to remember that guilt is part of this for all of us.  You didn't ask to have this disease. 

I think at this point, you may not be ready to talk to the friend's mom with MS.  I know that I didn't want to hear from anyone else on how to live with MS until I was a bit more grounded.  If you don't feel comfortable yet, then give yourself permission to put that off.  You do need a good doctor you can work with though.  For most of us that means a neurologist but it can also be a good GP as well.

Good luck with all this, Heather.  Someone once said that life doesn't have to be perfect to be wonderful.  I hope you feel this way soon.  Keep posting - let us know how you are doing.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 7/7/2008 8:09 PM (GMT -6)   
Hi Heather:
I am sorry you are having a hard time. The advice Gretchen gave is wonderful. She is Is the best and helps everyone here. Everyone here is really helpful. I am new but wanted to show some support and say Hi. I too have been feeling sick for 3 years but The doc said it was nothing and now they think it is MS so I am going for tests. I feel lucky I found this place where we can all support one another with this disease. I also try to ignore it thinking it may go away but it doesn't. Just a thought maybe you can apply for some benefits from social security to help out with expenses. They have a disability program. You have paid into it as long as you worked 40 months all together. You can do it online. I helped my dad do it when he was 52 and wasn't able to work anymore because he was sick. Think about it.

Willowmom
Regular Member


Date Joined May 2008
Total Posts : 88
   Posted 7/7/2008 8:36 PM (GMT -6)   
Heather- I just want to say I'm sorry that you are struggling with this. Gretchen did give the best advice. Journaling helped me tremendously. And eventually a self-help group, although I think you have to be ready for that or it can make you worry more. And do remember that MS is different for everyone! Crazy disease! I have an aunt who had been diagnosed for 30 years when I was diagnosed and she had done well for the first 25 (without the benefit of the disease modifying therapy then) so I was optimistic. My initial exacerbation took 6=9 months to improve from. Did you have an exacerbation that started you feeling worse 6 months ago? Are you using any treatment? Being on the meds at least made me feel I was doing something to control it, whatever was in my power. And letting go of what wasn't. I also have a really hard time accepting the sacrifices that others make on my behalf. I haven't found good ways to deal with the guilt yet and have gone too far in the opposite direction to shield my kids from having an extra burden...now I fear I have a 16 year old that I must "speed train" for adulthood ;) Hang in there, and just keep coming here to vent if that helps. Willow

Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 7/7/2008 8:51 PM (GMT -6)   
Sanddune,

I have already applied and been denied. I am now in the process of filing for a court date, but that won't happen until for about 2 years.

Gretchen,

I am stuck between anger and denial. When I was told I had fibro, it was a relief cuz I had something that wasn't really gonna get any worse, and then another doctor told me I ALSO have MS, and it just feels like too much. I truly believe that God never gives us more than we can handle, and sometimes is just feels like I just can't take anymore bad in my life. I know I have to deal and accept, but every time I feel like I am getting close to being alright with my life something or someone just throws a monkey wrench into the middle.

I can't even be totally honest with myself about this, let alone telling my husband the whole truth about all of my issues. And I just feel lost. And I can't seem to find my way home again. How do you accept something that has the potential to destroy everything your life is built on? I love my husband more than anything I have, and I all I can do is wonder if he thinks I am just another burden on his shoulders. He tells me everyday how much he loves me and how he would do anything for me, but he shouldn't have to deal with any of this. How can he be so accepting of me and my issues, when I can't deal with them myself?

Heather
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  Starting Betaseron for MS
 
co-mod for Fibro


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 7/7/2008 9:45 PM (GMT -6)   

Heather,

He loves you!!!  Why do you find that so hard to believe??  You very clearly are a lovable, valuable and wonderful person.  You show great courage and strength in dealing with not one but two chronic illnesses.  Stop trying to do this all by yourself.  Talk to your husband.  He would want to know this!!

Hang in there, Heather.  We are right here cheering for you. 


Gretchen       co-moderator MS board       diagnosed with MS July 2006


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 7/7/2008 9:48 PM (GMT -6)   
Dang, Heather, your post has struck home... I am in this same weird space lately... it's like I knew this was coming but when it did, after all the months of the neuro fighting to prove it's something else only to end up it being what it is... NOW I'm the one thinking maybe it IS something else, could he have missed something... like I slipped into some kind of denial.
 
When I got dx'd with fibro in 2001 it was the answer but things kept happening that didn't fit it either... but made me sound "crazy whiny"... looking back I can map the progression really clear now and still I'm thinking, maybe I can just get in shape... and I realize I've fallen into  a hole of mild depression and denial.
 
So I'm reading Gretchen's recommendationl, and I'm scouring every resource for something to keep my spirits up, and I seek support everywhere like here... and I pray constantly for understanding and wisdom and patience with this body that's turned on me and won't give decent answers to my neuro either! And daily pain... my Goodness, the pain is constant, and it reminds me it's such a slippery slope we're on...
 
So I guess I just want to assure you that you're not alone in this feeling, and I'm sorry you're feeling it too, but I think it'll pass, we'll get thru it with our day in and day out persistence to survive and cope. And I 'll be praying you find some relief too... I know there's a good plan out there for me, I just gotta watch it unfold now instead of making it happen around me! May you find the same in your progress... acceptance is the most difficult thing when we can remember how it used to feel to be "normal".
 
Thanks for such an honest post... it's like reading my soul bared for the world!
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 7/9/2008 8:42 PM (GMT -6)   
I just don't know where to go with this anymore. I just get so tired of the yo-yo affect this has had on my life. Some days I feel alright with MS, everythings going good, but then I want to go do something and I am CONSTANTLY reminded not to over do so that I can still move the next day. I'm tired of the trade off, and the explanations. At this point in my life, I haven't told everyone what's wrong with me. There are just a few people outside my family who do know and they don't push me. But when I tell someone else, I have to go through the WHOLE story. Ya know the one, What's wrong with me, how it was found, how it progresses, what is it gonna do to me over time.

Then there are the days that I can't get up and go. If I do get up, I don't usually make it very far from my bed. Those are the days that bring it home. I am sick and it kills my spirit because I know that if I had listened to Jay (my husband) I would be able to get up, go to work or get down on the floor and play with my kids. I just have a hard time trying to find that balance when my body won't mantain the motor skills. Everytime I get close to finding a middle road and it's going good, my body shuts down and I have yet another relapse and I am just so frustrated over all of this.

How do I find an acceptable lifestyle when my body keeps changing the rules?

Heather
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  Starting Betaseron for MS
 
co-mod for Fibro


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 7/13/2008 7:59 AM (GMT -6)   
Heather, at the risk of sounding rude and intrusive here, I would suggest you get honest with yourself and all your loved ones around you and then become transparent to everyone... that's how I've dealt with it.  After re-reading my own post before this one I realized I was wading thru another funk then... they're gonna happen, you just keep wading and you'll get out.
 
Correct me if I'm wrong but it sounds like your husband loves you very much which is such a huge blessing when we feel like such a failure as a wife and mother. And the best part is that you've been given this man for such a time as this for YOU! I don't know where your faith stands but it sounds shaken if you have any, and I'd recommend renewing that and seeking peace with Him over this too. You sound angry and frustrated and rightfully so, we all are at some point but instead of letting this disease destroy us, we figure out how to cope daily and move on.
 
Consider your alternative to everything in your life relating to this disease... if you let it beat you, what have you accomplished? If you don't do anything but stay in bed, what have you taught your children about handling adversity? If you handle this with total pessimism what are they learning and what does anyone else gain from knowing you or loving you thru this? What do you gain from any of that self-destructive behavior because the disease limits you?
 
It's like if you suddenly had a car accident and found yourself a paraplegic. Would life end? No. It would only end as you knew it. Now you would embark on a new life of learning how to cope with your limits, with the pains, with the meds, with the exhaustion, with whatever is happening to your body. That's how I figure this, only folks can't see it and that's our challenge.
 
Yeah, I get tired of the curious questions and I cut it short sometimes when they come back with "but I have that too" or "you poor thing" ... I don't want pity, I don't want discounts, I don't want any sad eyes... understanding when I'm not somewhere they want me to be part of, or when I say No, I can't help ya out this time, or sorry but not a good day today... but no pity, no poor Debbi stuff... and many say, "but you're still smiling!" And I reply, "what good does anything else do?"
 
So, Heather and everyone here, I apologize in advance if I've overstepped my boundary here but it grieves me greatly to hear the suffering in your post. I know it hurts, it's bad, it's heck to live with and I hate it too. I remember my body when I was friends with it and liked it. I remember the days when pain was not my constant companion and an array of meds not my regimen. But this is life now, and I accept now because such is my time. My husband is a wonderful man (like yours sounds like) and he's told me time and again, just tell me so I can understandl. Believe me, I am only HALF the wife he married and he so deserves more! But he says he's got it all with me just like he fell in love with and I"m sure yours agrees...
 
So embrace what you've got Heather, take a deep breath, smile, deal with one day at a time, one step at a time, find your limits, get your coping mechanisms and skills in order and enjoy now. It's all we've really got that we can count on.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 7/17/2008 8:54 PM (GMT -6)   
Debbi,

Thank you. That post touched my heart and brought tears to my eyes. I have never been one to sugar coat anything, and I never mince words over how I feel, and what I think. You sound alot like me when I get on to a subject that I am passionate about. I was raised catholic, but i also follow Long House which is a native american faith. My faith has been shaken to is core. I truly believe that the Gods of my faiths would never hand me more than I can deal with. It is my job and my duty to myself, my family and my Gods to figure this out and learn whatever it is that I need to learn from my life and my illness. I am just having the hardest fight of my life to figure out what I am to do with my life. I am struggling and I have faith that I will make it to the end of this journey with my faiths strong and my family even stronger.

I decided a few months ago to let nature takes it's course. But I think that I was just giving up on my body. I think that once my husbands new insurance kicks in, I will be finding another neuro as mine has closed up shop and trying the medication again.

I just wanted to thank everyone for listening to me whine about all the wrongs in my life. Today was a good day. The pain was the same as it always is, but I just felt stronger today than I have been feeling in a few days.

Thanks,
Heather
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  Starting Betaseron for MS
 
co-mod for Fibro


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 7/17/2008 11:46 PM (GMT -6)   

Heather,

You go girl!!  You sound so much stronger.  It was so nice to read your post.  You can do this; you can fight this and find joy once again in your life.  It is amazingly rewarding to find new ways to live your life when, as you say, your body is changing all the rules.  I think of this disease as the enemy.  This enemy is going to keep taking from me.  But I have the choice to find a way to create meaning, and purpose and joy!!!  It is my way at getting back at MS.  Ha ha you can't take my soul!!!  You can't have my happiness!!! So there!!! 

Keep up the good fight!!!!


Gretchen       co-moderator MS board       diagnosed with MS July 2006


Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 7/19/2008 3:14 PM (GMT -6)   
Hey all,

I am still going. I felt absolutly horrible this morning, BUT I still got up and went to work for 3 hours today. I am super tired, but I am still cleaning my house and I just want to take a nap, but I know that if I do, nothing else will get done and my house will be an utter disaster.

I am doing everything I can to stay moving, and active so and the end of my day, I can scream at the top of my lungs....Take that MS!! I beat you today, and I'll see you tomorrow.

Thanks for listening to me be weak.

Heather
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  Starting Betaseron for MS
 
co-mod for Fibro


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 7/23/2008 4:55 PM (GMT -6)   
I am humbled so much when I come back to replies like these! Thank you Heather and Gretchen! I love these replies! Heather, thank you for responding like you did, you are right to embrace your faith. Draw closer to your faith and He will draw you nearer to Him so that your strength is renewed from Him. That is what keeps me going. I do not discount myself because someone says, 'remember it could be worse'... for me this is the worst! I am not someone else's worst, this is mine and I will not let it be discounted or diminished because it's compared to someone elses situation.
 
So with that in mind, I keep what you said: it is not me and it will not beat me. I will not become it. It cannot steal my joy or my soul. Thanks for embracing that. I will keep you lifted up in prayer constantly as I do for all of us with this disease. There's a reason we get what we have and we'll all understand when we're supposed to... in the meantime, we're someone's lesson or inspiration! I know that we touch those around us in ways we cannot fathom. In that I pray always to be in the right space at the right time and let my weak moments stay private with my God. :)
 
I am on vacation in Alaska with my husband and son and every day my body has had to remind me that MS is there- the limping, the cramps/pains/spasms, etc etc (gotta admit the cool weather sure feels good!) :) ... but nothing has stolen the joy & treasured moments of this time together with our friends in God's incredible country up here! 
 
Thank you Heather for your beautiful response!
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~

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