SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Do things people say make you cross?
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
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Do things people say make you cross?

I do try honestly not to take what people say to me to heart but sometimes it just gets to me.

The latest was yesterday.

I am really struggling with my bowels at the moment I get this sometimes especially when I have a lot of pins and needles in my nether regions, and I find it really hard to GO. Sometimes have to sit in the loo for ages.

Anyway talking about this yesterday with a member of my family and she said "well you do sit about a lot being ill that can cause constipation you need to walk about more!.

I was livid but managed to hold my tongue.

I get so annoyed with this old chestnut. I don't sit about all day.

For example this morning even though my legs are hurting and burning I got up at 8am, tidied up the kitchen, did the dishes, put them away, hoovered throughout the lower ground floor, washed my kitchen floor then just for the hell of it I baked a CAKE. Yes for the first time in months.

Then at 9.30 I took Lucy out for her walk.

When I got home at 10am then I SAT DOWN.

I mean I do this routine most days even when I feel really ill. The only time I dont do this is when I am really ill and have to rest BUT I try to keep upright.

What gets me is I have friends who dont work because they have lost their jobs and they sit at home all day doing nothing and spend most of their time on facebook.

Why cant people just give us a break.

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27 Comments
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535822_tn?1413656274
Oh Darn it arent some people thought less I have one of those including a Dh who thinks I am a hypochondriac at times..I take no notice of them now I dont let it get to me however sometimes when you could use a friendly ear and a sympathetic tone it does get you down ...well you have mine I know how tough life can get especially when you are trying to go to the Loo....
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1063463_tn?1302278219
I am sorry that you have to deal with people's rude comments.  Most people do not GET it.  We do what we can.  I bet if they felt the way we felt they would not get out of bed.  My life goes on no matter how terrible i feel....Hang in there sweety!!
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1137779_tn?1281546105
Oh yes, indeed, Maria. I've had exactly the same comment from a family member.

All I know is that my mother is completely bedridden and almost quadraplegic due to stroke: she has no problems with her bowels/constipation.

Blimey! You've did more in one morning than two care workers do in a month! (I know whereof I speak,,,)

I don't know how you managed to bite your tongue back.

You know, I absolutely loathe how just about everyone psychologises just about everything and everyone nowadays. You notice how the psychologising is never to the subject's benefit?

Thank you Freud.

It's very easy to do though - and very dangerous. But it seems we all do it. It seems to me to be a form of resistance - the other person is resisting accepting that there is something actually amiss and that they, perhaps, should be offering more support.

A couple of years ago, due to my own experiences of having my physical signs and sx being brushed off chronically, I thought about this phenomenon long and hard. I made a strict decision to never again jump to psychopathologising people. (on the basis that you have tobe the change you want to see in the world...;-)

It's amazing how much simpler my world is now.  

Meanwhile, Mrs A and margypops and all other limbolanders everywhere, you're not alone! We should set up another group...campaigning against the intrusion of uneducated psychologists in our lives!
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551343_tn?1350880995
Hi yes I do a lot sometimes but believe me my legs are telling me off right now LOL, and I am off to bed. I have the energy in the morning its just come lunch time that things go upside down LOL.

Big hugs off to watch emmerdale. Mariaxxxxx
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535822_tn?1413656274
oh I remember Emmerdale Farm ...my daughter in UK loves East enders .....
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Avatar_f_tn
okay, i was not going to respond to this for fear of unloading way too much, but i will try to keep my rant to a minimum.

one of my brothers is a "behaviorist"--has a graduate degree in psychology--and when i described one of my particularly scary episodes that landed me in the ER to him, he said "don't you know what an anxiety attack is when you're in the middle of one?"  i still love him because he is my brother, but otherwise i have lost all respect for him as a mental health care professional.

my mother-in-law was visiting a few months ago and had gone to lunch with some friends who live near us.  she returned from her luncheon date and when i asked how it was she said, "oh, we all just sat around the table trying to figure out what in the world is wrong with you!  carol anne [one of her friends] said maybe you're just starting to go through early menopause.  do you think that might be it?"  i was flabbergasted and politely said, "no, i don't think that's at issue here", and walked away with many expletives on the tip of my tongue.

i guess they're trying to be helpful, but like sam says, rather than analyzing the situation, i'd rather have someone put their energy into helping me fold laundry or take my kid to the playground since i can no longer do so.

--end of rant--
binx
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1137779_tn?1281546105
Thanks for the rantette, binx!

Dear Lord...what gives people the sense that they have the right to pontificate on the mental/emotional/physical status of others...? Tch.

Life really is simpler when people don't do it (and when I don't presume to do so either).

You know, the one thing that 99.5% of people do not say is 'How can I help you?'

It's the most useful thing you can say to someone who's poorly. Taking kids to the park is far more use and FUN!!

And, binx, I'm so sad that this little pleasure is denied you now. I remember having such a great time with my two when they were that little. I'm so grateful I was fit and well to be there for them physically and enjoy their growing up. I sooooo hope that you get the right treatment so that you can recover enough to do those things with your little one again. (The housework can go hang...!! ;-)

samxx
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1146227_tn?1265666403
My children are now teenagers - ARRRRRGGH! need I say more? - pleasure is now fleeting in our exchanges.  
They are so wrapped up in themselves contemplating their navels they dont have time to be tidy around the house or notice my struggle behind them. If they could spend a fraction of the time they spend on showering and preening themselves on tidying their bedrooms and putting clothes in laundry basket.......
Anyway, the big hurt was recently when I was nagging and putting my foot down , my son said "let me guess, you dont feel well again". It was the dismissive way he said it.
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1056589_tn?1273750702
I was going to stay clear of this subject because I have very strong opinions on it. There will be no Buddhist quotes or teachings here folks...LOL

I have lost count how many times I have said to various family members " if only you could feel the way I do for 24 hrs then maybe you would understand"

I have never been one much for patience anyway.It has gotten much worse since becomming ill.

Unfortunatly it seems that most people are narcissist. They are so totally self absorbed that there is no room for compassion and understanding for others in their tiny universe. But it is the end of the world if somthing happens to them. No matter how miniscule.

I have always been blunt and honest in my way of thinking and speaking. People either appreciate it or think I'm sort of a *****.Regaurdless I am not a mean person at all.
People get away with way too much sometimes. And they need to be told that what they are doing or saying upsets you. Sometimes people are not really even aware that what they do causes pain or negative emotions. Do not let people hurt you! I am not sugessting that you bite everyones head off. Choose your battles.Strangers dont really matter because they really dont affect your life one way or the there.But friends and family need to be made aware that they have hurt you because you have to deal with them.Whether you want to or not sometimes.lol
Life is way to short and unpredictable to be around nasty people!

Take Care, Theresa

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551343_tn?1350880995
It seems we all suffer from the same.

I love all the posts and Theresa I so agree with you about people being narcissist.

My sister who is 62 moans at me for NOT TRYING HARDER, but boy you should have had to put up with her because she had menopause and was on HRT for 7 years, blah blah moan moan. I supported her through it with no complaints, but BOY it took her 2 months of me being ill to tell me to get over it.

I try not to let people upset me but sometimes you just feel so crappie that your mouth runs away before your brain is engaged LOL.

Thank god for you guys.xxx
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1063463_tn?1302278219
I agree with you all.  My mom and dad have been very supportive of me and the rest of my family as well but I have some friends who seem to think"it's all in my head".  LOL..I wish..but there may be some truth to that...I believe it is my head and it is not my mind over thinking it is my mind not working properly.  People make me so mad passing judgment upon me.  If they could only feel the way i do then maybe they would understand it.  I have 3 daughters 15, 11, and 7 and I am missing so much of their lives.  I do not like being in this shape.  I would give anything to be the way i was.  Stay strong my friends!!
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Avatar_f_tn
Oh, yes. Many, many things get my goat.

Mostly it's that people I care about just don't get it. They try to empathize and - EPIC FAIL! I know you mean well, people, but if you can say, "Oh, I get that too. I was so achy I decided to completely skip going to the gym yesterday," you just don't get it. At all.

I told my mother-in-law, who is a wonderful person by the way, about some tests doctors had mentioned to look for things like MS, Lyme, etc., and she said, "Well, you don't have anything that bad." She wasn't being snarky; she really thought she was being reassuring. But just because I don't act like I'm in pain every moment doesn't mean I'm not.

The nurse at my new PCP's office told me I could be a 10 on the pain scale because I didn't "look" like I was in pain. (My doc is great, though.)

The first neuro I saw told me my problem had to be rheumatologic, and the second (very recent) told me it was all anxiety. I was livid. He told me he could order an EMG/NCV, but he was sure it would come back negative.

Guess what? The neuro administering it told me it was abnormal. She said it wasn't clear-cut enough for her to give me a diagnosis on the spot, but it was definitely abnormal and the cause was definitely physical.

Vindication! Yes!!!! Oh, how sweet that moment was.

I haven't had a follow-up with the closed-minded neuro, though. I'm really hoping he doesn't STILL try to play the results off as no big deal, but I'm afraid his ego might be too big to let him admit to himself that he was wrong.

I'm trying to find out what fasciculations look like vs. what fibrillations look like so I can be prepared if he tries to pooh-pooh me with BFS or some such, but I can't get a clear explanation of the differences is pictures and sounds.
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Avatar_f_tn
Sorry, that's "could not" be a 10 on the pain scale.
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956292_tn?1334058469
Hi,

I have been reading some of the things that people have been saying to you and can not believe it. I have not experienced that but have experienced somthing else. I have been totlly shut out by one particular friend.

I have not told family about anything going on with my issues just yet until I have a better idea of where I am..I do have a friend that knows I have been going through some tests and the possibilities of the outcome. I keep her updated when she asks but I don't call her every minute and talk..anyways..recently I have noticed she has not been responding to my e-mails or calls..
We got an invitation to a New Years Party at her home, so we went..which I was sick with a sinus infection .....but we went...after that I had written an e-mail to her telling her thanks and sorry I was not well......she wrote back and then I wrote back to her, I also expressed that her friendship was imprtant to me and acknowledged I have not been around alot but I try to and apoloqized but I just have not felt well but wanted her to know she was improtant to me.

NOTHING......No response........There is a lot more to this because her business has been thriving, my husband lost his job and we are struggling...she is booking vacations and planning events we can not afford and when have to decline she gets pissed..I don't think she gets it...but since I have been not feeling well it has been worse..
I have always tried to attend as much as I can and stay in touch by e-mail and calling but she won't answer or call weeks later claiming she never got the message...

I guess I can not feel ill unless I have something that physically and visually shows how miserable I feel.....

It really bothers me but I don't know what she expects....

I guess I wish she would say something It might be easier to deal with....

Jenny
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Avatar_f_tn
jessic--i can relate all too well to your experience with your doctors dismissing you, and although i am sorry that your EMG was abnormal, i can appreciate the sense of vindication it has provided.  i hope you get some answers soon.  i have already started a dozen letters to my primary care doc in my head telling her where she can put the anti-depressant prescriptions she has tried to foist on me!  once i finally get a dx, she will be getting a hard copy in the mail.

and jenny, i am so sorry you are feeling abandoned by your friend during this incredibly difficult time, and i hope she finds it within herself to respond to you.  there isn't any excuse, but sometimes real life freaks people out and they can't deal with major issues like illness or layoffs.  ultimately, you really do find out who your friends are when the chips are down and it can sometimes be a lonely experience.  i think that's one of the reasons we're all reaching out on this board.

with healing thoughts to one and all,
binx
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Avatar_f_tn
Thank you for your kind comments. There are way too many of us in this situation. How many of us are being, not allowed to fall through the cracks, but actually PUSHED through the cracks by the people we're PAYING to take us seriously and help us. I get so disgusted. I'm sorry this is such a big club, but I appreciate the support of everyone.
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551343_tn?1350880995
My other pet hate is "WELL YOU LOOK SO WELL".
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1137779_tn?1281546105
Jessic - that's a good one! 'Being PUSHED through the cracks' - absolutely. I sense that it has something to do with having one too many X chromosomes...

Tingletoes - yep, I know the teenage/young adult obliviousness-to-the-point-of-annoyed-callousness! It's really painful to live with. i'm sorry that you're having to go through it....

Mrs A - hahaha! oh yes, indeed! What gives other people the expertise to take one look at you and pronounce you healthy because YOU LOOK SO WELL ?! My former GP said this to me, and not in a nice way. Are people totally stupid?! Do they expect defective spinal cords to leap out and expose their lesions for their benefit? ;-)
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Avatar_f_tn
hahaha, I loved all your posts and will restrain myself and only say a little of what is backed up in my feeble brain.

Yes, family members can be quite frustrating at times when it comes to our illness and especially our lack of dx, seemingly giving everyone doubts about how we must be feeling!

Maria, I have the opposite problem with the bathroom, and sometimes don't even know that I've had an accident, so I can relate to how frustrating this problem can be either way it plays out.

But, my biggest pet peeve are those who have been lucky enough to receive a dx and treatment for their symptoms and down grade our symptoms and at times treat us like we don't know what is happening with our own body's and minds.

They will give you all these examples of what it must be, even though you don't have, and have never had the symptoms associated with said diseases...haha  I mostly ignore them, but sometimes it is hard.

I do pray that all of us will get our dx this year, which will be a step forward in making our lives somewhat easier, and have the "proof" ignorant people seem to have to see to believe!

All my best!
doni
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