SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Friendship
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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Friendship

Is limbo having an effect on friendships and especially old friendships which were established  -before- you found yourself in limbo?
0%
 (0) 
No-why would it?
12%
 (2) 
No-most are supportive of my situation even if they don't understand
0%
 (0) 
No-my friends understand limbo is difficult and help me to deal with this
43%
 (7) 
Yes-I just don't have the energy so I can't do 'normal' things
6%
 (1) 
Yes-I now struggle to be independent because of my condition
12%
 (2) 
Yes-my friends just don't seem to be around anymore
18%
 (3) 
Yes-my friends just don't understand
6%
 (1) 
Friends? What friends? They all disappeared
16 Members voted
Related Discussions
15 Comments
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It is such a cliche. Get a diagnosis and lose friends and alienate people through no fault of your own.

Knowing this I felt I really made the effort to maintain my friendships. However, there is always one...

Penny was my best friend. She didn't handle me sharing the news that the neurologists wanted to pin an unwarranted CD diagnosis on me well at all and she actually stopped all communication.  One of the most difficult things to deal with were her last words to me  'are you ill? ARE YOU REALLY ILL??? WHO are you to question the doctors?'

But, is it that simple??? Her life and mine were heading down two very different paths before I became ill so perhaps it was just profoundly unfortunate timing that she chose to end a lifelong friendship with nary a word.

Cue violins ;)
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551343_tn?1350880995
Its strange for me as i never really had friends as I lived abroad a lot and never seemed to maintain a long friendship. The friend I have known for years well I told her what was happening and now i hardly get a peep out of her which is a shame.

I do think that someone being chronically sick is hard work in some respects I can see why they might act that way.

I am having all kinds of problems with my partner at the moment he just doesn't seem to get it at all.

Being ill and being in limbo land for me is worse as people close just dont understand how you can be ill and not have a diagnosis and therefore it must be all in your head.  Even my family sometimes give me the impression that is so. I hate it when they say to me WELL YOU LOOK SO WELL, GRRRRRRRR.
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Hi Mrs A

Gosh, I can totally relate, to all of what you said...

It is a shame we look so fantastic but are so ill, isn't it ;) sod's law. And, my husband can be the most wonderful guy then BAM, we are really fighting because of this but its what we do.

You are right about this being hard work. Hard work for us, for others. Hard work period. We work at staying well which exhausts us, we work at being normal as possible which totally exhausts us, we work at relationships..it is all very hard work.

It seems as if I am whinging but I am not, really. I am commiserating and I am also still trying to get this straight in my head because when every day is unpredictable and different it is no wonder everyone, especially us, is tetchy at times. I mean really, think about that for a minute. NO routine, no ability to plan, no normalcy just because of being ill.

Then , to add insult to injury, when we are feeling well we ALL overdue it and who can blame us?? We grasp a  'normal' day gleefully with both hands and we go out and we are happy and we are getting around well and we are thinking well and many things in our bodies are working in harmony but then we pay for it for days.

Take care and think of your adorable little bundle of love who will soon be joining you :)
xxx
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505094_tn?1240321031
I haven't lost any friends, but have gained new ones during this ordeal.  I think that's because they are people who are used to taking care of people.  My family is divided on what they think I have..(and who asked them anyway?)

When I worked in hospice many years ago, I did see people become isolated because of their disease and we were told that it was frightening for most people to accept diseases in someone they cared about because it brought up their own mortality issues, helplessness issues, etc.  It was really apparent to me when I helped to start an Aids Hospice in the early 80's when Aids was really a frightening experience for most people.  With MS, most people don't really know much about it and don't want to take the time to learn about it.  Families do have trouble with this.  I've found some really good articles that I've offered to them, but few have read them.  I've tried not to take it personally, but sometimes it does bite.  
It is sad that people who care about each other become separated over any illness, Charley.
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551343_tn?1350880995
Hi charley thats a brilliant post I concur with all you wrote.

My sister is like this doesn't want to know. When i say it could be genetic she goes off on one. I think she is just scared she might have something. The funny thing is she suffers really bad with restless leg syndrome which is classed as a neurological disorder and people with MS get this as well, so for her to have a ND the same as me, my daughter, my dad, my grand dad and my brother is a bit coincidental dont you think LOL.

I think that some people just dont know how to cope with chronic illness I expect they think if they stay around us long enough it will rub off onto them.

I must say you see just talking to people on the Internet you meet such great caring people like yourself. I mean how wonderful that you helped to open an Aids Hospice. Its sad isnt it what they say no good deed goes unpunished. Its true. It seems the more good you do in your life the more cr*p hits you.

I wish people when they get married for example would be reminded that we are humans very vulnerable and one day we could end up needing help even 247, it isnt all hearts and flowers and things can change very quickly cant they.

To be honest Charley if it wasnt for my forum friends and buddies I am not sure I would have got this far and that is the truth. People like yourself who take the time to post and make people feel better just with a kind word. I have met some lovely people and buddies.

Thank god for the Internet that is all I can say. Big hugs Mariaxxx
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Hi Charlie and Maria

You are both lovely. Thank you Charley for your thoughtful and insightful post.

And, you are both right about wonderful forum friends :) believe me when I say I never take them for granted.

x

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I find it hard when it comes to a couple of my friends, especially 1 of them.

She comes across like she does not listen to you, just makes out she does. As weeks later she will come out with silly things like why is your arm playing up, even though she has asked the same question weeks before.

If I have to cancel going out because I have come down with a attack, she never asks why or am I okay just says mmm okay. I get this feeling she is doubting me, as she said not that long ago how come they have not found out what is wrong, I thought they would have found out by now.

I think some people cannot understand how 1 minute I can walk okay & the nx I can't or just that I do not look ill.

Luckly for me my family have noticed how bad things have been for me, like my hubby says when I am half asleep & I try to turn in bed he has noticed how hard I find it to turn & many nights I am moaning it pain because of my spasms in my back, or when all of a sudden I loose my balance.

To me as long as I have faith from my family thats all that counts, if my friend chooses to disbelieve me then thats her hang up not mine, as the day will come when I will find out what is wrong & where all those that disbelieved me, will be the ones who will feel bad & have maybe lost a friend in the process.

I am loosing my faith in her as a friend as she, by the looks of it has no faith in me.
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Hi Louby

Isn't it amazing how similar all of our situations are?  

Your post is very insightful. Unfortunately, even when my friend found out I didn't board the crazy train ;) she chose to stay away. It has been over a year and I suspect she has chosen the path of least resistance.

This begs the questions:

Was she really a friend if this happened?

Were our lives going different directions and this was simply the way things would have happened despite MS?

Well, I believe in giving the benefit of the doubt but I draw the limit at more than a few times lol And, in my case, my life and Penny's life were definitely diverging but I don't personally see that as an obstacle to friendship.  

I remembered a situation which happened to me years ago.  I had a dear neighbor who was dying of cancer. My response? I avoided him more than I should have because I found it painful to see him decline. But, it was not reaaly about me and my needs. I see that NOW.

Was this the best way to handle tht situation? no

Was it perhaps understandable? yes

SO, I can understand this person's reaction but I cannot do anything if she has refused to interact with my in more than a year.

So unfortunate and unavoidable, or so it seems. She also labelled her husband a hypochondriac so perhaps she paints everyone with the same, judgemental brush...What I have learned is it is tiring and a waste of my precious energy to continue to consider a situation which is out of my control.

I hope things improve with your friend.

Perhaps your friend feels powerless, is doing what I did all those years ago with my neighbour because it hurts them to see you languishing in limbo, perhaps this is the only way they know how to deal with your situation. Communication seems the only way forward but it takes more than one to communicate-therein lies the problem.

Only you can make the decision whether or not your friend is worth it.

I would love to tell Penny that it is ok that she didn't handle this situation well, that my capacity for understanding has improved significantly, I am a kinder and gentler person because of what I have been through. Finally, right or wrong, we all do the best we can at any given time with any situation.

Our best mate actually witnessed me going into a bad relapse while we were out with him. This opposed to hearing about MS relapses really, really rattled him and he subsequently avoided us for literal months. HOWEVER, there are good outcomes IF both friends want to salvage the friendship.

It took understanding and both of us wanting to find a way forward because I was furious with him over his behaviour and I was really defensive. I put that aside and he put aside his issues. He got his head around the changes in our lives due to MS, we talked and we are the same as before.

Sorry for rambling... ;)
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505094_tn?1240321031
I had a rather amazing experience yesterday.  My husband, a builder, was working for a couple last summer on their summer house.  She called a couple of days ago and told him that she had something for me and could we come over.  They were getting their house ready for winter and would be there for only one more day.  I'd never met them.  They turned out to be a delightful couple and she had made me a prayer shawl.  She, I think, is Catholic as the pattern was the 'Trinity'.  I do not make distinctions between religions and do not care where prayer comes from, only that it comes.  She wrote me a letter to go along with the shawl which said that as she made each stitch, she prayed for my well being.  
This is from the prayer shawl site, http://www.shawlministry.com/

"Shawls ... made for centuries universal and embracing,
symbolic of an inclusive, unconditionally loving, God.
They wrap, enfold, comfort, cover, give solace,
mother, hug, shelter and beautify.
Those who have received these shawls have been
uplifted and affirmed, as if given wings to
fly above their troubles..."

  Written in 1998 by: Janet Bristow Copyright ©2009

Even if one does not believe in God, one can feel loved by such a gesture.

Thank you all for your kind words. It means a lot.

It's really hard when some of the people you love can't be who we want them to be.  One of the things that I try to remember to do (I do have a hard time remember sometimes, ha ha) is that when someone turns away, I think to myself, I forgive you, and that softens my knee-jerk reaction to the situation a bit..when I remember to think it.
Hugs to you all, Charley
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551343_tn?1350880995
How lovely. Its these things that make it all worth well isnt it. xx
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What a kind, generous, selfless woman. The fact that this happened a long time after your husband was involved in their lives is really a testament to her...and you.
  
Despite the cliche life is a journey and we all do the best we can at any given moment, we are human and I think the goal is to continue to grow. People like this woman help make the journey easier.  Thank you for sharing, Charley.

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428506_tn?1296560999
I got support from the least likely sources but also lost friendships that I thought were forever.  Getting a diagnosis didn't change that, either.  
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I have found this exactly.  Well put.

Hope you are well.
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I came across this and thought it appropriate:

"Too late we learn, a man must hold his friend
Unjudged, accepted, trusted to the end."
- John Boyle O'Reilly

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848718_tn?1257142401
I didn't have anyone "dump" me because I got sick. At first, people were really supportive, bringing meals over and visiting and such. But as my health problems have dragged on and on, they've kind of drifted away. And I don't blame them because it's hard to keep a relationship going with someone who's mostly homebound. :-/

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