Aa
Aa
A
A
A
Close
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
Sort by: Helpful Oldest Newest
Avatar universal
Thanks Wanna, I love you dear friend!!

hugs.........doni
Helpful - 0
Avatar universal
Hi Doni,

I am glad you are here and getting some of this out!!!!  You need to some support so please come around here more and we can be here for you!  

You have been dealing with too much for too long.  You just got done unpacking and cannot even enjoy the new little house you love...you worked through your own issues but you got settled in!...and now with your husband...it just seems to pile up on you in an unfair amount.

This is a good group!  Good to see you here.

Hope you are having a good day.

((((HUGE HUGS))))
Wanna :o)
Helpful - 0
1056589 tn?1273747102
I have always been a very strong person.I face things head on and deal with it. But I know it is hard to keep on keeping on at times. Sometimes the future does look bleek and your entire life turns into one big **** storm. I know exactly how you feel..It gets overwhelming. I agree that planning for the future is important and has to be done. But just dont forget about today . You have got to communicate with your family about how you feel. What about the stress in your life? All the burden cannot fall upon you. If you keep all this inside you are going to explode one day...All the stress and anxiety you are feeling mentally takes it's toll physically.

Please Take care of not only your family but yourself....Theresa...
Helpful - 0
Avatar universal
Maria & Theresa,

His neuro put him on the "Exelon Patch", which is an alzheimer drug approved for MCI.  

I do try to be positive, but you can't be positive to the point of not preparing for the future.  I have to prepare in case his MCI progresses to alz.  His mother suffered with this awful disease, and his symptoms are much like her's were.

He also has a low heart rate, so I've been praying that this may be the cause.  He goes for an EEG this week, and I'm hoping it gives us more info.

I have always been one to want to know the facts, and I am glad that I have the means to research my questions.  I am also very level headed when it comes to doing my research.  I feel the best way to deal with anything in life is to be prepared and educate yourself with the facts.

Life sure can throw some things at you sometime, and I've had my share these last few years.  Has it made me stronger?  I can't really answer that question, as I've always been pretty strong.  I do know that my faith is stronger, and I know that when this life is over, there are better things to come.  I guess that's what keeps me going.

That and sweet people like you.  I thank you for giving me encouragment, as I need lots right now.  I will prepare for the future as best I can, and pray for good things.

Maria, I hope your husband feels better and takes better care of himself.  I know how the guys can be though.  My hubby doesn't really acknowledge my health issues very much.  He notices when I'm having a bad day and can barely walk, or when the fatigue is overwhelming, but I don't talk much about how I'm feeling.

My family pretty much still depends on me for everything, and still thinks I'm capable of being Super Mom...haha  I try to hide how I'm really feeling physically, as not to add any stress to their lives.    

Hugs,
doni
Helpful - 0
1056589 tn?1273747102
What Does Not Kill Us Makes Us Stronger.  (Friedrich Nietzsche)

I have choosen to live my life by the rules of this quote.


I am so sorry that you and your husband are dealing with all this crap. But you have got to stay as positive as possible.Please Stay strong.....


Take Care , Theresa






Helpful - 0
551343 tn?1506830518
What can I say to ease your burden.

You MUST be positive about your husbands diagnosis you just never know how these things pan out.

Look your husband is probably under a huge amount of stress what with your illness and this could be simply why he has been diagnosed with MCI. It doesn't have to lead to Alzheimers. Only about 5percent go on to develop alzheimers.

I found this :

There are many different reasons why people may have some mild problems with their memory. Some people will be in the early stages of Alzheimer's disease or another form of dementia. Others will have MCI as a result of stress, anxiety, depression or physical illness. A doctor may, or may not, be able to say what process underlies a diagnosis of MCI in an individual.
//////////////////////////////////////////////////////////////////////

You have skipped 5 years because of your googling and now you have your hubby with Alzeimers thats the problem with google.

Take away the Internet and the knowledge, how would you have coped with this diagnosis? We all suffer in some forms with this condition. My daughter for example is 35 her memory has always been awful and gets worse when she is stressed out. Lots of people are like this.

Try to calm down a little over this diagnosis, it might not lead to anything much and hopefully wont ok. He could simply be reacting to the stress of YOUR illness and worrying about how you are going to both cope financially etc its almost like a catch 22 situation. I so feel for you both.

Was there any treatment offered?

To help his MCI it would be good for him to engage in more exercise, take up a hobby and do brain training games (WII is good for that). Its been known that these types of activities help enormously so the more he does to help himself the better he will be.

I know you are scared who wouldnt be.

I have a similar problem with my husband who is just killing himself. He is only 63 now and cant push me in the wheelchair and god I am not that heavy.

He has first stage empasima and refuses to stop smoking. This morning he could hardly breath. I just wonder how much longer I have left with him before I walk out or god takes him.

There are no guarantees in this life for any of us all we can do is the best we can.

Try and calm a little it might not be as bad as you think and hopefully it wont be.

You have a lovely Christmas and worry about it all in 2010 ok.

Big hugs Mariaxxxx

Helpful - 0
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

  
Helpful - 0
1056589 tn?1273747102
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....



Helpful - 0
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.
Helpful - 0
956292 tn?1334054869
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
Helpful - 0
848718 tn?1257138801
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.
Helpful - 0
1056589 tn?1273747102
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
Helpful - 0
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
Helpful - 0
1056589 tn?1273747102
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.....
Helpful - 0
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
Helpful - 0
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

Helpful - 0
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
Helpful - 0
551343 tn?1506830518
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


Helpful - 0
You must join this user group in order to participate in this discussion.

You are reading content posted in the SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Group

Didn't find the answer you were looking for?
Ask a question
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.