SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
I WANT TO SAY SORRY.
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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I WANT TO SAY SORRY.

For leaving you for so long. I lost my way.

When I received the letter from my neurologist about the MRI results I just KNEW I was never going to get a diagnosis and just felt so flat and depressed. It got even worse when I saw my GP and she told me well I don’t think you have progressed so much ………

I felt like screaming at her “ ARE YOU SERIOUS”.  3 YEARS ago I was working now I struggle to do the basic things without being pooped out and in pain. How progressed do I have to be?

I guess I just felt sorry for myself as I couldn’t see a future for me anymore not in this pain as there was no label how do I get well if I don’t know what I am living with.

Then I went on our forum and saw everyone who is ill and in the same boat as me and I just felt even worse as I had nothing left in me to share or help others who are in pain too. I just felt overwhelmed by it all.

A very good person rang me from the forum and spent nearly 2 hours on the phone listening to me moaning even though she is hurting herself and when I put the phone down I felt better just receiving that support make me feel special in some way.

I realise now after thinking quietly for a few days that this is it……My life for now. I either have to accept it or just give up and I have decided that this girl still has some fight left in her so its time I stopped feeling so sorry for myself and sorted myself out.

I don’t know yet how I am going to do that but I have decided that I need to make goals for myself. The first one was for me to go OUT in my car on my own without my care worker, so yesterday I did just that. I only went into the village and did some essential chores but I SURVIVED lol. I did it without forgetting where the car was (I have done that) and I felt good afterwards. I am lucky as I have always had an automatic car.

I got back safe and funny enough not too tired.

I think I had almost convinced myself that I couldn’t go out on my own or do things but now I realise it was just the easy option I can so do these things myself. I am not ready yet to go further a field as my confidence in driving is not as it should be but I am going to take the car out with my care worker next time so I have that bit of support. God it sounds so stupid all of this but it is real to me. What started the problems with my driving was when I totally forgot where I had parked the car it freaked me out a bit.

So what next well little steps I think I need to not be so hard on myself.

I am just so sorry that I haven’t been there for any of you but I think I tried to help too many people and just became overwhelmed with everything and despaired because the medical profession were failing so many of us.

I have had my Devics blood test now but I expect it will be negative and this is really the last time I have a test I should have stuck with my original decision and not do anymore label chasing.

So I just need now to learn how to live in limbo land for the long haul. It hasn’t killed me yet – and what don’t kill you makes you stronger lol.

So I hope you forgive me, I am trying to put myself back together so I hope you will be patient with me.

Thanks for reading, I want to thank Stormy for keeping the group going. mariaxxxxx












Related Discussions
10 Comments
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1146227_tn?1265666403
Your need to withdraw is totally understable, there is no need to say sorry!!.

I personally am so grateful to you just for starting this forum, it has been a life saver for me - where else could I find a group of other people that are going through similar experiences and who are so kind and supportive - I had found no other forum to fit my problems that I felt I could join.  

I cant imagine how demanding it must have been to try to support all the new members as you have done, each with their own difficult story to tell, and with your own health getting worse, no wonder you have had to stop to try to nuture yourself and clear your head. I find it quite hard just to post one or two messages on here a day!!!

You need to know that as this forum grows ever  bigger your input can relax when you need to , as all of us are beginning to make firends here and soon your creation will be almost self supporting!!! (we will always need to know Mama Bear tho is with us and OK ).

You need to get through this now by using your fantastic forum to share all these doubts and frustrations you are having, allow us to support you now until you feel a bit better . Just pour them out in a long post every day!!!!

I am so pleased that someone kind was able to call you - whoever that was gets a huge thanks from me!

I cant pretend and say that Life in Limboland is not a crappy place to be , cos it surely is - but there is always still some hope things can change or improve again - and we all have to fight to cling to that idea.

Hugs xxxx

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1056589_tn?1273750702
The same kind and very intuitive person picked up on my $hitstorm aswell...Thank You!

Mamabear,
I think it is great that you did your shopping by yourself.It gives a sense of accomplishment...You have a lot of fight in you . After all you made it this far!

Do not feel bad for needing some time..I think sometimes you forget why you started this forum to begin with.You yourself are in Limbo Land. You have your own set of problems too . I myself found this forum for the same reasons. Sometimes it is very hard to be there and be supportive  when your own personal world is falling apart.

It is a very hard pill to swallow but sometimes we just have to accept that which we cannot change. I too have given up on getting a real DX. After a while it just doesnt seem to be worth it to even subject ourselves to more tests and doctors. Not trying to be negative just being honest.

You do what you need to do to find your happy place agin...

Please Be Well!!!!!!
XXXXXXTheresa



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956292_tn?1334058469
Hi Maria,

I am so sorry you have been gong through this. I am so glad you had a little angel to call you and help you through...(bless her little soul whoever she is) You started this forum for so many people in the same situation as you and you have always been there for everyone, setting yourself aside to help others while trying to deal with everything going on with yourself!
You are an angel to me for starting this forum so people could find someplace to go when they had no answers or needed somebody to listen without judgement and and try to make sense of it all!  And now the time came to take care of YOU and focus on your health and make decisions about you..you have always been here in everyone's thoughts, prayers and hearts...I so want you to be well as I want everyone I have met here to be well and find answers....Everyone deserves time away to sort things through and focus..it is nice to know this place, this forum, is always here waiting with open arms, open hearts and open ears to pick up right where someone leaves off..

I am so glad you were able to get out and about...I know just how hard the thought of that can be sometimes..good for you!

You are always in a prayer, wish and a hope from me that thngs will come full circle and will soon not have to be in LimboLand!
I am so very grateful for this wonderful place we can come too and it was you Maria who made it happen and it is wonderful people like Stormy, who can step in when you need a break..Thanks Stormy.
Love JibJen
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505094_tn?1240321031
Nothing to forgive or feel sorry for, my friend.  We all do understand as we are all experiencing the same lack of care and understanding from the medical community.  Some days I can't respond to the posts either that come in either because I'm feeling to emotionally weak to do so.

I've been thinking a lot about my life and what I've been able to do work-wise and personally and feel such intense despair over all that I've lost.  We are not only stuck in time and space with the 'unknown' that is happening to us but I believe that the mourning over 'what was and is no longer' is a very powerful and present part of our lives right now.  

I believe that this grief has to be expressed as well as every other emotion...and that we all need to get to a place that we can express it without worrying if it is going to be too much for someone else to bear or feel guilty because 'we ought to be able to handle it better-stiff upper lip etc.'  Don't we have a right to be fully present with whatever it is that we feel?


Do we apologize for being sick, feeling useless, feeling afraid, abandoned, or lost?  We do.  It's just what we do.  It gives us a great opportunity to think about why we are apologizing in the first place.

You have had a wonderful life. I've read your background and think how great it is that you've touched so many people.

Now, you are still doing that but in a different way.  I agree with all the posts above and the ones to follow that you have given us all a place to feel lovingly supported.  This forum has been one of the highlights of my life in the last couple of years.

You don't have to respond to all the posts especially when you are feeling so lousy.  The most important person in your life is you and you have the right to take care of yourself.  Someone else will always fill in.  That's the beauty of this group.

When we are overwhelmed-that's when we all need to take particularly good care of ourselves.  

There's a lot of strength in all of us that gets shared when times are tough for others.  I know that personally because this is where I come when I can't handle what is going on in my life.

Please believe that as you have been here for us that we are also here for you.  Sending you many hugs, Charley
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Avatar_f_tn
dearest maria,

there isn't much i can say that hasn't been said by my esteemed residents of limboland above.  you have given so much to each and every one of us and no one here would ever begrudge you the time you need for self care.  i am eternally grateful to you for creating this community where we can give and receive support unconditionally.

i look forward to reading everyone's posts to this forum and value the feedback i have received about my own situation more than i can ever say.

rest, rejuvenate, restore.  do what you need to do for yourself.  you know we are all here for you whenever you have the energy to return.

blessings to you,
binx
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1137779_tn?1281546105
Hi Maria

How are you this weekend? I hope you're feeling a bit more rested and buoyed up...especially at everyone's wonderfully kind and empathic comments. We all know the gross fatigue, remorseless, unrelenting, unexplained pain and the despair and despondency that comes with it.

You need to put yourself first and be there for yourself above all. No one thinks any the less of it. What you've done here in initiating Limboland is phenomenal - it's a place where everyone feels welcome and understood and supported. This is an incredible gift when you're struggling with clueless doctors who are not really trained to care about the wider effects of illness ...and it's even a lifesaver as some have said.

all things considered, I think we can allow you some time off now and again! ;-) LOL
And we can happily reciprocate the gift you've given and support you as and when necessary!

big hugss
samxxx



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956292_tn?1334058469
Lots of Love, Big Hugs and Special Toughts You!!!!!!!!!!!!!!!!!!!!!
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551343_tn?1350880995
Hi guys thank you for your wonderful support.

I am trying to be more positive and the sun is shining this morning.

I just lost my way a bit. I do feel tons better its all the positive vibes coming from you guys.

Today is a new day. Little steps.xxxx THANK YOU. xxxx
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Avatar_f_tn
Hello Cybermum!

Sorry you have been having such a rough time. You are not alone at all. I too seem to have lost my way and any hope in the medical community. I still have no answers and it is very frustrating and depressing. Hang in there, which is what you would always tell me!

Ginak
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1063463_tn?1302278219
Maria- I am so sorry that you have been struggling so much but I am happy that your struggle is making you a braver soul.  I am in the same boat with driving.  It has been just over a year now and I have not driven at all.  I had a major episode in my car with my kids  and since then I have been scared to go out on my own.  I was always an independent person as yourself but this past year has changed who I am.  I too think I will set goals for myslef and try to do things on my own (such as driving).  I think short distances will be fine and I need that time for me.  Thank you for al of the support that you have given to us here and just know that there are people praying for you daily!  Take care!!
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