SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
How limbo/your condition affect relationships w/spouses/partner
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
521 members
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How limbo/your condition affect relationships w/spouses/partner

How does limbo/your condition affect your relationship with your spouse or partner?
15%
 (2) 
Though it is not my fault I often feel guilty about this
0%
 (0) 
The only time we fight is when we fight about this
0%
 (0) 
We are either getting along very well or fighting - no middle ground
46%
 (6) 
The unpredictability is having a detrimental effect on our lives
23%
 (3) 
Because of my symptoms we struggle to maintain intimate relations
0%
 (0) 
My spouse/partner seems to resent that they are now a carer
7%
 (1) 
I need more help now, my spouse/partner doesn't understand this/ its causes me to resent them
7%
 (1) 
My spouse/partner often tell me they are sick of hearing about my problems
13 Members voted
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19 Comments
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Avatar_f_tn
I could have chosen all of those but I ran out of boxes  ;)

This affects every aspect of my life thus our lives.
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551343_tn?1350880995
Hi, that was hard like you i could have ticked most of them.

I do feel guilty though of being ill because it seems to stop us from doing things.

God I hate this illness. Still in sickness and in health i must keep reminding myself.

xxx
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Avatar_f_tn
TOO RIGHT ;)
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937617_tn?1314215791
I know what supo_uk means I too could have ticked most boxes. I think a lot of people don't know what these conditions mean to your every day life. ''The truth is out there''....
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956292_tn?1334058469
I could of picked them all too but I guess the most is that i feel my husband thinks I am over reacting to everything and our intamacy level is down the tubes..We fight when we talk about my doctors or issues..we are not so well right now. ;o(
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Avatar_f_tn
Wow, I am sorry that it isn't just us that these issues affect, I wouldnt wish this on anyone...

Then again, I am not surprised because all of us have such similar circumstances it stands to reason these issues would also be similar.

We have had some really horrid rows over this, and then turned around and were amazingly good and understanding with one another.

The worst was when he seemed to doubt me, when he couldn't see that this WAS NOT anxiety or a mental health issue because we were told all tests were normal. Trust was destroyed - temporarily.

After 3 very long years we seem to only recently be getting it right. To be honest finally finding out this is MS did take away so much of the stress and only a limbolander knows what stress I am talking about-not knowing, obsessing about what is making you ill, researching and discussing all the time, dr appts, dealing with insurers, employers, it never ends....

I am profoundly grateful we stuck it out, that when all else was gone (patience, understanding, kindness amongst other things) was gone the love remained and even when we were angry, hurt, resentful neither of us threw in the towel. I don't know how we managed, to be honest because the 'D' word was brought up more than once...but, what matters is we did and we are getting through it and you will, too.

This was a long time coming and it took a great deal of effort on both our parts. Or, avoiding each other until we cooled off ;)

Happy Halloween!
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956292_tn?1334058469
BOO!

How are you? I think your right..the hardest part of it is the doubting part. I love my husband but boy do I just want to scream sometimes and make him understand..I think your right finding something out will help..We do know when we need to take a break from each other..knowing that is a good thing before you say things you regret... I'm glad you stuck together! I am sure we will do the same. He is worth it!

Have a Spooky Day!
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551343_tn?1350880995
hi jibjen. I agree if you havent got a diagnosis they almost seem to think we are making it up.

My hubby however, takes more pills then I do and I still support him even though his illness is self inflicted through smoking.

My problem is I cope too well, and he thinks I should be able to do it all the time.

I cant though. This problem I have now with my back etc has shown just how vulnerable I am. I havent even been able to take my little dog out.

I think a diagnosis would give me peace of mind if nothing else and perhaps my family might take me more seriously.

Happy Halloween. Mariaxxx
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956292_tn?1334058469
Hi Maria,

BOO! I hope you are doing well! You are right on..He just doesn't get it...It's different if say you are in a full body cast then it is pretty obvious , wow she must be hurting, but to look at someone and say, "I really think your making a big deal out of nothing" ummmmm that's hard to swallow from someone who does not know how you are feeling when you are numb and tingling and cramping and sore and tired .................and sick and tired of being numb and tingling and sore....sorry I am beginning to rant ..My hubby gets a cold and he's flat out on the couch for a week... I have called in sick maybe 1 time to work in 11 years for the flu or when I had surgery but regardless of a migraine OR my current situation not a one.....It takes every ounce of energy I have to get up and go and then come home and stay up utnil it's time to go to bed......................


MEN...............they can be so scary ;o)

Happy Halloween ;o)
Jenny
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1079987_tn?1258044516
Well...I must say my husband is amazing!! He always tells me that my only job is to just get better. He won't let me do anything, he does everything for me. My family and childern are the same way, very understanding. I know I am lucky and completely blessed wit a wonderful family and husband. I will pray that you all get the same care you need and deserve!!

Meg
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1079987_tn?1258044516
I forgot to say.....regardless of how great my family is I do still feel guilty everyday!! I so do not take advantage of my situation. I can't wait for the day that I can take care of all of them instead of them taking care of me.

Meg
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1063386_tn?1287882169
my friends family and co workers are starting to think I am crazy  a neurosurgeon said I am fine described my Chiari as if it were a mole that I didnt like the way it looked but it was harmless.   The Chiropractor said it was whiplash which makes every one think I am just a whimp and cant handle pain.  I have an insurance company and workers comp confused as to why i am off work and most my docs never even bothered to document my visual problems.

My parents think I am lazy and just dont want to work or care for the kids properly (which no one could live up to their standards even well)  My dad yells at me every day to get off the dam. couch and do some house work even though I try hard to do what I can.

My husband is starting to get frusterated driving me every where and me chasing a condition that 2 docs had said isnt bad.  He is upset that I think the Chiropractor is making things work and demands that i go so that I can get some of my income back (I was the sole provider and with me off work we have no income)

my kids are suffereing as I can't play with them like I used to I can't do 1/2 of what I used to for them.  they are tired of me always telling them to keep it down.

I lost most of my friends as I can barely talk on the phone as the sound hurts my ears and my head hurts worse.  I can't go any where and I cant drive so they have just stopped calling and asking me to go.

mostly everyone in my life thinks I just dont want to work and I am making this out to be worse then what it is so I can lay around and do nothing.

I want them to feel my pain for 1 day.......maybe then they would see how hard this really is.
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1063386_tn?1287882169
so sorry for the rant.    I guess I never looked at the people in this quite like that before  apparently I had that building up and didnt even realize it.

my kids are going through just ads much  I must say for their ages they are doing well they deserve alot of credit.  and for the most part my husband has supported me he is jsut burnt out.
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Avatar_f_tn
Dont ever apologize. I dare say all of us understand your frustration...

Rant away and feel better for it..
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1079987_tn?1258044516
I agree with supo_uk, don't ever apologize how you feel. No one can understand completely unless they live in your shoes. I feel for you and pray that your family begins to understand your pain. I am sorry you are in such a bad situation and wish I could do something to help. Maybe you should print off some other peoples stories that are similar to your own and ask them to read them. Keep searching and eventually you will find a doctor that will be on your side. Maybe try getting a hold of that great ER doctor that helped you recently, she seemed to understand your situation.

I pray that you receive some peace and understanding.

Meg
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585414_tn?1288944902
My family has been supportive as well as a few close relations but other than that I have basically lost social functioning but am trying to regain it. It is quite difficult for me as well as the people who know me.
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551343_tn?1350880995
Hi and welcome to the group sorry I havent contacted you before.

My family are supportive BUT sometimes I dont think they get me at all.

My mother said the other day (she is 87) that sometimes you just shouldn't MOPE about but get on with things. She can be very tactless sometimes she doesnt mean it but it comes out wrong and it hurts.

I dont MOPE about and seem to be always busy with something. I want to get back to work if I can just a few hours a week would do me.

Everything is so hard. I am going to visit my mother on Friday and we are going out for lunch, I know that just doing this social thing will wipe me out for about 1 week. All I have to do is sit in a car for 30minutes, chat for 2 hours, sit in a car for 30 minutes going home. How can that be hard?

But it is.

Sometimes I just dont have it in me to even try to do things as I cant face the consequences.

Everything is just so hard.

Do you ever think to yourself WHY ME? I do sometimes when I feel down like I am at the moment.

Why me, what the hell did I ever do to anyone to be laden with all this rubbish.

I have always worked hard, loved my family and have supported and loved others too.

But then when I am feeling better again I think WHY NOT ME? Rather then me then one of my children.

Life is weird isnt it.

But someone has to do it LOL.

Maria
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585414_tn?1288944902
Actually thankfully I have been identified as mentally recovered so as treatment and understanding of what I have progresses I've carried over what I've done in the past to the internet. Frankly, I don't think I'd be around without it. I would not identify which exact forums I am on because I wouldn't want people to identify from other forums but I am on most mental health forums and also some political debating sites. As well with a TTY and Access A Ride and a home attendant (which I am in application for) I am trying to get back into the outside world. However, if I don't and most probably I won't in full I try to keep a positive pragmatic outlook. I remember when I first got to know people who advocated for disability rights and one person I met had muscle dystrophy and wasn't going to live more than 10-15 years and yet had done much to help others and at the time since I wasn't mentally recovered I had episodes of depression, I was able to use that attitude to build my confidence and in some ways to be prepared for when I acquired my physical disability. As for my family, one family member with my help recently, came to terms with the fact that they have bipolar disorder and started treatment and my grandmother who has had repeat mini-strokes and a fall that caused a TBI which did impact on her thinks of herself as a person with a disability and when things goes wrong takes steps (which we assist her with) to get the help she needs. I know everyone is entitled to their outlook but this has what has worked for me.
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1056589_tn?1273750702
I have experienced all thee above at some point . In the beginning I had mostly self loathing and was sooooo angry that this had happened to me.I took it out on those around me. I had never been seriouly ill a day in my life and had no idea how to deal with this. But as time progressed so did my mental state. I had an epiphany one day and told my symptoms to go to hell. When I did that I started to feel better. I now live my life and focus on how far I have come on my journey. I live each day to the fullest. I let those close to me know I love them and how important they are.
I have learned to let my family know when I don't feel well.Because my symptoms are invisible they don't know unless I tell them.Communication is key to maintain healthy relationships.
My husband comes to me to all my neurology appointments. He needs to know what the hell is going on and who better to explain it than my doctor. I have been fortunate to find a compassionate neurologist. One of the very first things he asked me was how was my family /husband dealing with this. How many doctors actually ask that ?
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