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Handling The If You Would Do More.. You Could Do More


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Hey, well it is that cycle again where hubby and family are sick of seeing me sick and the, ?well if you would do more you could do more? lectures and suggestions start. I have had this for 10 years so the well if you would just get up is past me and I understand why all this comes but it makes me mad, sad and just plain crazy. And it always seems to come right after a particularly bad spell. I just had a horrible reaction to an antibiotic and was sicker than I have been in awhile. Am finally feeling back to normal horrible and this is still a hole compared to normal bad. heehee And what I want to say to them is, ?now? now you want me to say oh yes you are right if I did do more, or called more or walked more or took this medicine again that I have tried and made me sick it would be so much better because I just went through **** and the thought of doing anything to put me anywhere close to that again is not what I want to do now. Maybe in a week or 2. And sorry I am rambling but hubby went on and on about how if I would just exercise (which I know I need to do and prolly don?t do enough but really can?t do most things) and practiced walking that it would get better. And then of course the mean comments which is just his frustration but they still hurt...the why should I do anyhting I have him to wait on me and that he takes the easy way out by not pushing me and that I need to find the strength inside of me to do more cause my quality of life is what I am going to make it. And all I want to scream is that I AM DOING ALL I CAN TO GET THORUGH THE DAY WITHOUT CURLING UP AND BEING A BABY AND TRYING To SIT UP AND TALK and uhhhhhhhh sorry it is just that now just talking to him takes all most all of the energy I have and then I have to add talking to everyone else and then exercise and going out on the couch to watch tv. To be honest that does not matter to me I would rather watch tv in here and save up for a trip out of the house or a long phone conversation. He says I am waiting for something, a magical something and it is not going to come so I need to make it. IF I haven't been able to make it in 10 years why is it now??? And to be honest right now my hope that I will ever get better is fading and they say what they feel and what they want without really considering what I might be going through...and I think I do the best I can. And maybe I do need to try harder and I will but I wish he had waited a week or 2 more but he didn?t and they didn't and ohhhhh sorry rant rant rant rave...I just feel like screaming ?oh yes I love my life, not being able to get out by myself, not being able to get my own food, being alone all the time, being sick yes this a joyous life. I don't know? not really looking for answers just needed to scream and hear? I hear you, I have felt that before and here is support. I will try more as best I can and we will see where it goes from there. I guess over all what I am saying is that sometimes the times they choose to give the do more lecture is at the times when the thought of having to do more because I feel so bad is just beyond comprehension and not that it would sound good on good days but at least then I could say ok I can try with out screaming (to much) hehe. And why is it all ways days when my hope and spirit are low and why can?t they understand that this is not what I want my life to be and I do wish for a magic pill and I am doing the best I can. Sorry for the long vent and hope that you understand?thanks

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Oh sweetie I feel your pain, I really do. I just had a vent post yesterday I don't know if you read it but I am going through the same thing except you worded yours better. This illness is so hard on everyone but most on you. So if everyone is feeling frustrated if they would just walk a mile in your shoes they would realize your frustration is 100x greater. Not to make little of their feelings but we are the ones who are actually living in this nightmare.

My husband told me yesterday the one thing I haven't tried is exercise. Like I don't know that. If I didn't feel like puking my guts up every minute I would try. I would love to try. I remember the only physical pain I had to endure was exercise I wish I could get that life back.

Do you have children? I was just wondering if you had any suggestions on that aspect.

Just know that your not alone and we are all here for you and understand what you are going through. If you need to talk you can always PM me.

Tell everyone to back off and you will push harder when you can. But for now you need to get your strengh back from having such a bad period.

Hang in there Girl

Dayna

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Guest Belinda

I am with ya girl...you just curl up and get it out seriously. Noone else knows what you are going through but you..if you can't do it then you can't. Don't beat yourself up about it just let it go in one ear and out the other..or try at least.

I am sorry oyur having a rough time I know the feeling..Belinda

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I haven't been as sick as long as you, but I do get the same lectures. Some of my family trusts that I'm doing all I can, while others feel they know better than my doctors! It hurts when they tell me I'm not trying hard enough to get well. I'm getting into therapy to deal with it because I don't know if I can handle those feelings of helplessness and alienation on my own anymore, perhaps you might want to talk to someone too (although I know my major problem up till now has been physically getting to therapy, so you may have that problem too.)

I do agree with Ernie that it's probably their way of dealing with issues of helplesness. Still, they should realize they're only making things harder for you, not better.

Hugs,

Lauren

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Hi,

Just wanted you to know that I understand how hard it is not to have the support you need at home and by someone you love.

I'm sorry you are so bad and you have to struggle so hard each day.

I don't have near the problems you do and if I could take just a little of your pain so you could live more of a normal life, I would. It doesn't help I know but I still wish I could.

That goes for everyone here..........I feel bad that my symptoms are so manageable when there is so much suffering.

Thank you for opening my eyes and letting me see that I should be greatful for even my bad days.

Good luck and follow your heart.

Amber

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You guys really are the greatest.I am crying now but because of the support not the arghhhhhhhhhh! Thank you I KNOW you know how much it means when someone says I hear you and yes it is ok to feel that and I have felt that too. Dayna thank you, I did read and it was one of the reasons I decided to post cause I was feeling so like you but was not sure how to put it either and also did not want to lessen your post (hope that makes sense) but I hear you too. I don't have children so I am sorry I can't help there but I do have a niece and it is hard not to be able to see her and have her come over (and have to cancel when you are suppose to have over because of the anitbiotic reaction and your sister says you tell her, sorry mini vent!) so in a small way I understand how hard that must be for you. But they are resilient little things and I am sure they will be just wonderful especially with you as a mom.

Thank you all for your support,I hate when they make you doubt yourself like we all don't do that enough all ready but as you said it is their way of dealing with it. It is juts harder when it is the person who does see you everyday and sees how hard it is for you everyday to have them say this. Well I jsut don't know how to thank you but to say thanks and I am here for any of you if you ever need. I don't feel so alone now and that is a great gift....

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Sweet Stacey I am sooooo sorry you are going through this.

I am on my way out the door for a dr appt so I don't have time to say much in the moment but wanted to let you know I'm thinking of you and hope you feel better soon.

You aren't alone in this

sending you a BIG HUG

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I hear you... Its so difficult. I think its the invalidation that hurts the most.

When my husband or any family member gets sick and complains of hoe aweful they feel I always say... Now imagine this is how you feel MOST of the time and you are required to function ......

Most people would never have the strength or fortitude to get through what many of us get through.....and looking like we are "ok" while doing it.

I have had the stomache flu...for most people they convalese until they are better, but I know I do not have that luxury..... I have to go about my business.....

Its hard for anyone healthy to ever understand....

Hang in there! I think we can all relate to this one.... You are not alone.

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Stacey,

I feel soooo sorry for the lack of understanding from your relatives. Hugs!!

If it makes you feel any better, even if you do exercise and try your best, they will probably still think you are not doing enough.

Let them just have one hour in your shoes before they talk.

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Guest sonotech

I am sure since you have been ill for 10 years now that you have tried everything, but thought I would TRY and help..................

Has your husband of family ever been to your Dr appts so that they can hear straight from the doc's mouth that there "is something wrong with you"?

Maybe having your husband and family read some of the posts on this website would help them to realize that ther really is an illness causing this!!

Or even printing articles and POTS information off and giving it to them to read would help ( I am sure they could ALWAYS use a reminder of all the symptoms).

You ARE a STRONG PERSON and you are NOT ALONE (ever), so vent as much as you want, cuz these friends (on this site) will never question how you are REALLY feeling or what you are going thru!!!

:) LAURA

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Sometimes I think that if I ever got a magic wish I WOULD NOT wish for a cure for NCS and POTS. I WOULD WISH for a machine that when you point it at someone makes them feel like you do and then makes them feel like your absolute WORST DAY EVER and then back to how you feel now, so they would apperciate how you feel and how today is actually MUCH BETTER than you could be feeling.

Would you like to pre-order my NCS and POTS dream machine for when it finally comes in? :D

Cost to you: NO charge to people with NCS and POTS and other Dysautonomias.

Look of dawning and understanding on their faces: PRICELESS!!!!

Hope this at least gives you a smile!

UnicornIsis

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Stacey

It makes me so angry to hear and feel your pain, I honestly didn't know how to reply to this. Except like others said, try not to listen and let them judge you but THAT IS NO EASY FEAT when you are getting such treatment.

I would post other opinions but am so upset and made myself that what I have to offer you would NEVER make it past the censors!! :D

I do hear you, loud and clear. I hope the words of support from here can help you reach inside yourself and be stronger.

Tough to be your own advocate when you are so debilitated, disabled and disappointed in 'loved ones'.

Sophia

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dear stacey,

i am so sorry to hear this and i'm trying to think of something "wise" to help you. i do think ernie is right but i can so understand that you don't want people to lecture you when you feel so weak: AND PEOPLE SHOULDN'T!!!!

maybe next time (although i hope there won't be a next time!) you can tell them that you understand what they're trying to say but that it's not the right moment.

another thing is: try to safe all your energy for fun things with your husband and other dear ones. they are the ones important to you. you could let them know that you can't do this because you want to that with them. maybe they can even help you make choices. that's what i do: i ask my husband at what occassion he wants me to join him (something at our boys' schools, at his work, with his family or whatever) and then we choose something that suites (spelling???) both of us.

well, i guess you already know all this, i just wanted to let you know that i think of you and that i wish i could help you. oh and about the exercising: i think a lot of us have trouble doing that because we can't do this on our own, i really think we should actually have a special center where there are people who know about dysautonomia ready to help us exercise. i really wish i could get such a center built. i would invite all of you who can't exercise on her/his own to come fly over and exercise, exercise, exercise, but also have lots of fun!!!!

corina :D

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I so feel for you. At the moment my 14-year-old son has decided to live with his dad and won't even come see me. His dad told him the whole problem is that I am lazy.....

As if this condition doesn't cause us to have enough heartache in our lives.

Now... my son is on an event monitor because he's.... having dizzy spells and fainting. Hmmm..... his dad says he's sure he is just anemic. Fortunately, we both have the same PCP and this doctor isn't going to let this pass lightly.

My son was hospitalized with a virus last November....

I have heard so many times that if I would do just a little more every day I would get well. I tell them that when I got sick I was walking 2 miles a day, working 60 hours a week, and I kept pushing when I got fatigued... and that put me in bed for 5 solid months. And now I am SOOOO glad I am better...

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Thank you all so much...yesterday I was feeling so sad and thinking ok maybe I don't try enough, I don't do enough, maybe they are right but then I realised I was to tired even to talk on the phone to anyone about this and the thought of having to go anywhere just made me want to scream and then I read all your posts and I realized that this is not me being lazy, or not trying this is me and how I have been since 1995. You know it almost feels like I have started at the beginning again..when I first got sick and I kept havign to "convince" them that i really could not do things and that each day is just a trial...and you know that just is maddening and frustrating and sad.

My gran said the other day I feel awful, I feel as bad as you...but she had just come back from driving herself to Orlando and had gone to lunch and was tired. And I thought ok on the day that you say you are tired from watching tv is the day you can say I feel as bad as you. unicornisis (love your name by the way 2 of my favorite things!) I need your machine so pre-order it..thnks! :D:D:D

You guys have given me the strength back inside myself to know that on days I do feel a bit better I do try to do more but on days when I can't I can't. And the support and wish this was not true the knowing that you guys understand and feel the same and have gone through the same things is just so much help to me. I think the greateast gift we have even if we are ill is to know we are not alone and that others feel like you and that the reminder it is not your will that is keeping you down it is your body....

THANK YOU ALL!

dawgtied I am soooo sorry about your son and hope that all will be ok...hugs and sending good thoughts your way!

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Yes, even watching TV wears us out. I am sometimes so tired that laying flat on the mattress makes me tired - like maybe if I could just melt into it I could get more rest. It is a horrible feeling.

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I am so sorry you are going through that. I know that I have had days where it would have been OK if I didn't wake up -- the will to keep living just wasn't there -- and I have the full support of my husband and kids!!!!

Do you have any friends you can lean on? My best friends are ones who have gone through cancer and other horrible conditions and they have incredible empathy. It's seems weird, but I think we have to look for just the right friends, just the way we look for just the right docs. If they don't get it, keep looking.

Hang in, there. During those really bad times, I tell myself that "this too shall pass", and it does, atleast to the extent that i feel the will to live again!!. I really think this condition somehow affects the brain and it can feel so hopeless sometimes. BUT IT IS NOT!! They are doing research, and the researchers are taking it seriously.

I pass around Dr. Grubb's articles and Vanderbilt's articles that mention how incredibly disabling this is. I make sure my docs have them, too. That seems to help.

We are here for you!

Diana ;)

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Im so sorry that people close to you are saying such hurtful things! it truely is heart breaking.

I have noticed that now i am able to go to university and am happier (as i am not in as much physical pain) people tend to say mean things less. When i was stuck at home for months on end i use to sit on my computer as it was a way for me to communicate with friends without having to physcially move, i overheard my dad say to my mum who i was turning into a loser. That was possibly the most hurtful thing i have had said to me in my life. I could not understand how someone who had seen me fight for years to be able to study and be 'normal' could actually put the blame on to me and say such a cruel thing. Loved ones are strange in longterm uncertain circumstance and unforunately they are the ones who are best able to rip into our heart.

I cannot imagine the pain of being so severley impaird for such a long period of time. I think its amazing that you have not given up already! despite what people may put on us, i think those who suffer handicaps are some of the toughest people around. xoxox

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I too hear you. It is, wow what is the word... horrible to feel that people doubt you or worse when you feel bad. It is horrid when we are trying SO hard to do our best, konwing that it is not up to other peoplse normal, to be looked down upon.

And how do you explain that you cant remember things like others, see like others, just stand and cook like others etc. etc.

I got it last night because my husband wanted to get rid of some of my daughters old toys she does not play with.. I said well pick them out and then I will go thru them to see if I agree. He said... 'cant you just tell me what things in her room you want to keep?'. No I can't..... I will forget something. He does not get that. He gets it when I am pale and shaking and trying to get down.... That he gets... But of course that is a bit obvious... It is the 'smaller' stuff that people dont get.

I have finally just reverted to saying "I am doing my best, I know it is not always good enough, but I am trying, trust me."

So I hear you..... It is hard I know....

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