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SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Community
533 Members
Avatar universal

What scares you most about your future in Limboland?

Probably everyone on this forum is in the same boat, ill but not knowing why, some of us guess what it might be. Whatever we all have to deal with horrid symptoms causing disability & fear of the future.

Personally my worst fear is loosing my eye sight, if I couldn’t see I wouldn’t feel in control of my self, if I couldn’t use the computer I would feel isolated from understanding friends.

I am at an age when being less mobile is pending anyway; I don’t have family or a career to worry about.

18 Responses
551343 tn?1506834118
Hi that's a very good question.

What scares me is getting more disabled that I cannot manage my housework or take my little dog out on my scooter or a walk if I am having one of my good days.

I dont know what I would do if I was totally dependant as my husband to be honest is quite frankly USELESS.

He thinks that I am capable of doing EVERYTHING even though I struggle to do the easiest of things.

Its only because of my tenacity and personal strength that has stopped me going into a wheelchair before now.

Please let me assure you I used to run a workshop for the blind who were taught computers by a BLIND TUTOR, I kid you not. Her newsletter can be read on line, she is simply amazing.

http://www.modern-eyes.co.uk/

With her help there have been a lot of blind or partially blind people now able to send emails and google so there is a way around it even if it would be hard to do. BUT I agree also with you I would find it really hard, but suppose one gets used to most things.

No I am worried I will end up surrounded by garbage as my husband finds it impossible to put anything in rubbish bins LOL.

Thank god I get 7.5 hours a week direct payments through my local council so I have 2 ladies who come in and look after me get my shopping when i need it and take me out when I can go out and also to doctors etc. I would be stuffed without them to be honest.

This illness I have is bizarre, I mean one minute I can be struggling to walk and the next feel well enough to take the dog out albeit slowly. Its the not knowing how I will be everyday which is warring for me.

A good question though. I think I would rather end up in a home then be left to rot LOL. Mariaxx


Avatar universal
this is something that haunts me daily--in particular at 4:18 a.m. when i am unable to go back to sleep.

i am most afraid of the impact this is having/will have on my little one.  the other morning, she looked at me and said, "mama, i had a bad dream last night.  i dreamt that mama wasn't with me, and we weren't a family anymore."

it blew my mind.  i didn't quite know how to respond, so i just held her close and told her not to worry, that no matter what, mama would always be here with her.  i also told her that i was going to get better really soon.

i have worked so hard at keeping her shielded from the scariness of this experience, but there is so much one can do when there is an observant little person watching your every move.  of course she sees me when i'm pale as a ghost, unable to get out of bed, and she knows that i am unwell.  

i am also worried about the impact this is having on my husband who works 60+ hours a week at his job and then has to come home and take care of his sickly wife and pick up the slack with the parenting.

it breaks my heart.

binx
Avatar universal
It’s got to be worst for people like you with young children, I really feel for you. Your little girl sounds such a caring child; she must be a delight to you both.
I’m not knowledgeable about benefits, but could you get direct payments, so you could off load some of the chores your husband has to do, then you would have more family time.
Love
M

Avatar universal
thank you for your empathetic reply.  i know everyone dealing with health issues faces their own unique challenges--being a parent of a small child is just one of them for us residents of limboland.

i have sought to qualify for social security disability so i can pay to have someone help me out with our daughter, amongst other things, but was turned down the first time.  with my only true diagnosis being cervical disc herniation and spondylosis, they determined that i should be able to work full time.  considering that i have to lay down after emptying the dishwasher, i think they were a bit off base.  i am in the middle of appealing, but it is very slow going and there are no guarantees.  

we were very ill prepared when my illness onset in january (not like anyone is ever truly prepared for such a thing) as i had just finished graduate school in december '08 and was just preparing to return to work for the first time since our daughter was born.  i have significant student loan debt and now medical bills to contend with, so every penny counts.  if i could only work, that would eliminate a major concern for us; alas, i cannot at the present time.  i hope that changes soon.

i hope the fear of losing your eyesight is only a fear, and not a true risk for you.  i can understand your apprehension since my eyes are also problematic for me and the true cause of my visual changes has yet to be determined.

healing thoughts to you,
binx
1056589 tn?1273750702
Before I ever started to have problems of my own one of my biggest fears was to end up like Stephen Hawking.The brains still fuctioning but the bodies not.To be trapped in basically a shell that will not function. But as I entered my own neurological limboland all these horrific outcomes ran through my mind.I have a bunch of neurological issues. But  in my situation my cognitive issues have taken center stage. The worst part of it is that I am fully aware of it.


The other day I wanted to make potato pancakes.I have made them a zillion times. I could not remember how to make them. I tried for 20 minutes and finally gave up in sort of a crying ***** fit. My husband came in and held me then he ordered pizza. I know potato pancakes dont seem like a big deal but the fact that I could not make them was. But I am having lots of problems.I forget what I'm doing in the middle of doing it.
I cant remember where I park.I have lost some precious memories. Dates ,times of very important things. I have difficulty speaking and finding the correct words.It is frightening to me because I am just 35yrs .Will there come a time when I dont remember my family or who I am?



I unfortunatly am unable to become pregnant.I have only been pregnant once and it resulted in a partial molar pregnancy.The docs believe that it's part of my autoimmune puzzle. Before I became ill the hub and I had went to my gyno to discuss our options.We were going to try to get pregnant some how. I was not getting any younger. But the TM/MS/whatever put the brakes on that . I can only imagine what it must be like to be in Limbo Land and have children.I have puppydogs and I am one of those weird people that treat them as children. So I can relate a bit.


I believe that quality is better than quantity,I will not allow myself to become a vegitable.
I'm not trying to be morbid and I'm not in the least bit suicidal.Just a realists.

Take Care,Theresa.....
Avatar universal
It must be so frustrating for you not being able to remember everyday things, it’s the things we take for granted that we don’t make a note of, such as recipes & what to buy if we nip out for I or 2 items.

I am glad you have your dogs, they are such a comfort & not judgmental. Dogs are the most important things in my life & I make no secret of it. I only have one of my own but foster for a charity that helps elderly & sick people.

I used to compete with them at shows so still have a few like minded friends, which when we chat makes a pleasant change from health subjects. My mum is 86 & is always dragging me off to see her friends in homes & talk’s non stop of carers etc. What she doesn’t realise is that I am constantly thinking I will be like these folk before I am anywhere near their age!

I do hope you get some answers soon, they have drugs for people with Alzheimer's, I wonder if they would help you.

M
xx
1056589 tn?1273750702
My furry babies are my life. I have a picture of my Stormy girl in my wallet but not my husband..LOL
I really love dogs and animals in general.My dream would be to live out in the boondocks agin and have a sanctuary.
I have not shown dogs but I did show Arabian horses when I was younger.Growing up we had  horses, chickens,cows,pigs,cats and ofcourse dogs.Those were some of the happiest times in my life.it's funny because I can remember all that stuff with no problem.....

Lets hope we all get some answers soon!
Please Take Care,Theresa
848718 tn?1257142401
My biggest fear is that my mystery illness will kill me because I didn't get treatment soon enough (because no one knows what's wrong with me).

They're fairly sure its an autoimmune disease of some sort, most likely lupus or something close to it. And I keep coming across stories of people who took 5, 10, or more years to get their lupus diagnosis and ended up dying within a year of Dx because it had progressed so far. Ugh.

My daughter turns 5 later this month and periodically asks me when I'm going to die. I tell her I'm not going to die until she's an old lady. And I hope I'm telling her the truth.
956292 tn?1334058469
Hi,

Right now ..not knowing...and I would have to agree with SickMomma (Hi) If I am not being taken seriously and being treated soon enough for whatever is wrong..I'll be pissed.

JibJen
Avatar universal
I try not to worry about the future as I've had a lot taken away from me. I had to leave work 11 years ago due to vision loss, leg problems and fatigue. I'm housebound unless someone can take me out in a car and push my wheelchair.

I now have swallowing problems daily and really fighting to keep weight up. After 11 years in limbo due to my Dad's problems they are now looking at hereditary/ genetic disorders. My biggest worry there is my daughter.

My mum has another neuro disorder, also a wheelchair user, she is getting frailer and i'm as much use as a chocolate candle.
1056589 tn?1273750702
I tend to look at life/death a bit diferently.I am not afraid of death in the least.I dont really know why but I never have been. I mean ofcourse it's a possibillity .But its always a possibillity and has been since we were born.If it is my time to go then it's my time. After I found out about the brain lesions is when I sort of had an epiphany.In a way I guess I  have found inner peace and acceptence of whatever may be going on with me. I still have worries and concerns about  the future of my family  but all I can do is love them to the best of my abillity. I know that changing the way I look at myself and my situation has made a huge difference in my life. Depression and sadness
can make you feel awful even if you are not ill. So why not take a look at the positives and focus on what you can do. I know that may sound cheesy but it works for me....

Take Care , Theresa....



Avatar universal
I have had many fears since my symptoms became a daily problem.  How much longer will I have the use of my legs, why does everything overwhelm me when I'm usually such a strong person, why can't I think, will the fatigue finally get so bad that I won't be any good to anyone, and on and on and on.

But, as of last week, my biggest fear has changed.  My husband was dx with "Mild Cognitive Impairment", he is only 55, and was actually dx on his birthday, Dec 2, last Wed.

Well, as always, I googled, and was very unhappy about the things I read.....ie.....preclinical dx given by neuro's who suspect alzheimer's, 50% of people given the MCI dx will progress to alzheimer's in 5 yrs, and on and on.

Now my biggest fears are how many good years does my husband have, how am I going to support us financially since I haven't been able to work since 2007?  What is going to happen to us?

Needless to say, I don't think I've ever been this scared.  I spent most of the last 4 days in a paralzed depression, but am getting better now.  I know I have to find a way to deal with this, on top of all my health problems, but finding that way will be a major undertaking.

Wishing you all a very Merry Christmas and praying that all your symptoms will take a Christmas break!!!

God Bless,
doni

  
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