Sometimes I Regrest Telling My Friends How I Feel

[erikainorlando]

I do have some good friends. They were supportive when we didn't know what the diagnosis was...and actually most were/are pretty concerned. Then I kind of fell off the earth as I didn't talk much to anyone...too ill.

Now I try to call and sometimes when I do I am so surprised at their responses....some are great but say "wow....you just keep getting weaker and weaker". I say...no...I am just now well enough to talk and complain. I don't think I am getting weaker...do they really know how sick I have been?

Some say..."yea...at 40 it all starts to fall apart...". Fall apart...? I got Guillain Barre in 2001 at the age of 37. I got POTS at 45. They are both rare neuroologic disorders. I can barely walk around at times...I am not just making small talk.

Are they just tired of hearing me....?? I am tired of hearing me at times...!! As I write this I know that there are just very few folks who you can talk to about this stuff....I am very grateful for you all!

Please tell me if your friends/family have said some stupid things....I am sure it will make me feel better today....

Erika

[all4family]

I really understand how you feel. I tried telling my mom the other day how bad I have been, becaue I just couldn't talk, and she said oh its going around. Everyone is feeling that way because of the heat!! I guess she didnt get the hint, so I just had to come right out and say mom I am too sick to talk right now. It took me a bit, but she finally let me go. Then I had to recover from asking to be left alone. I am glad to know that all I have to do is get out of the heat, and I will feel better !

Suzy

[Brye]

I try to keep my friends updated actually. I think people shy away from illness and they don't know what to say. I know I have a lot of friends I don't see often and I finally just sent one mass e-mail out. I got a lot of replies thanking me for the update and offering help if needed. People didn't know how much trouble I had been having. It's always touchy for a friend to ask about a personal health issue. I just try to fill them in and save the awkward moments. That way when I do see them we can talk about other things. I don't know that I've had any horribly inappropriate comments yet. I guess one of my pet peeves is when I wear pants over my support hose because I'm embarassed I have to wear them and more embarassed about the horrible state of my legs and they say "aren't you hot wearing those pants?" The tempting answer is "yes and I may pass out if I stand here too long talking to you" The answer I use is I'm cold blooded. Keeping my friends informed so far has been a huge help to me!

Brye

[ladyt]

hi..

it is not easy for others to understand.. And even for us whit the same stuff will have difrent experiens of how living whit dys is..

Even for my its diffrent all the time, ust not the symptoms but how i deal whit it.. Some times I am very sensitive about comments, it depens on diffrent stuff and people..

I am a bitt sensitiv about comments from some people, like my in-laws (i am not married but have a boyfriend)... Like when instaling blinds my mother inlaw comented ower and ower again that i did not need the remote controll because i needed the exercise..

ore tha many many people asking what do i do whit all my time, and acts like my time is not so importen because I have so much of it bein disabeld. Well ther is areason for it..

i try to ignore and have in mind that people are mostly ust ignorant and not cruel .and that they might try to understand, its ust dificult for them to do so.. but i am only human, and somthimes being around others takes more than it gives..

And then there is all the advices, i gess kind given, but not always recived like that.. like me whit my insomnia, ust exersise then u sleep like a baby. well being exersise intolerant it doesent work like that..

i try to find the balanse between telling and not about my illnes.. Not easy.. Some i gess try to understand, others not so much..

But some comments are funny, like u are to cute to be sick...!!! ore u are to smart/resorsfull to be ill (so only so called weak people gett ill??)

Life is life

my mother inlaw ones sayd that we should be glad we had our health (her an me that was, yeah right..)

[firewatcher]

"Please tell me if your friends/family have said some stupid things....I am sure it will make me feel better today..."

Friends, family, neighbors, nurses and doctors have all said stupid things to me. You aren't alone in that! Sometimes you just get worn down by all of it. Allow yourself to wallow and regain a little energy...that is what I am doing right now (out of sheer frustration!) There is no way they can truly understand, unless they have a similar illness.

Be as well as you can be.

Support and Understanding!!!

[Broken_Shell]

Hi,

It is hard for those not living with a chronic, disabling illness to understand what we go through everyday. I feel the same way - should I tell my friends that on a good day I can push myself to walk from the car into the store, but I have to sit or crouch on the floor of the store while my mom does the shopping, maybe I can walk down one aisle before I get down? - Or do I just say that I went on an errand with my mom and let them think that I stood up and walked like a normal person and wasn't praying for strength and survival the whole time I was out of the house? You spoke my thoughts exactly - are they tired of hearing from me that I do not feel well? Because I am sure tired of hearing myself say it, and even more so of having to feel this way! It is confusing for me because on one hand I feel like I want to give my friends a reason to talk to me, so I try to sound perky and upbeat on the phone, but at the same time I don't want them to think that I feel ok and am just making excuses for not being able to visit them. It is a hard line to figure out, and it's just another one of the challenges those of us with dysautonomia face. On the other hand, our situations give us insight into what it would mean to be a caring, compasionate, and true friend, so if our bodies ever give us the chance, we will be able to really apply the golden rule in the future.

~ Broken_Shell

[pat57]

I always find that very brief comments work best, like "I can't". For one thing, if they don't believe me when I say that, I sure don't want to waste my time trying to explain (convince). If someone asks for more info I think you can tell whether its from a compassionate stance or not. Those like, my sister, listen and validate. Most people don't get it and don't care IMO. And it not -like already pointed out-, that they are meaning any harm, they are just not

capable of more at that moment.

[potsgirl]

I'm fortunate in that my family and some of my friends are pretty understanding. I have more of an issue - I feel like I'm complaining all of the time, and my boyfriend asks me at least once a day "how are you feeling?" I just feel like if there wasn't so much focus on my health, perhaps it wouldn't be such as issue?

Cheers,

Jana

[bjt22]

Yeah, people say foolish things. Part of the human condition, I suppose. I'm sure I've said my share of such things over the years...like to think I'm getting better about it, but who knows?

Anyway, if it will make you feel better, I've been on the receiving of well meaning, but yes, foolish comments myself, plenty of times. I'll share some of my favorite examples.

I'll start with my mother. Well meaning woman, who just really never totally got it. She tries, and these days, after more than a decade, she is doing better, but she far from realizes the full extent. Anyway, when I was first really sick, after the birth of my last daughter, I was pretty much bedridden for quite some time. I'd call my mom and try to tell her how difficult it was being here with all the kids and not being able to fully do anything, and her suggestions were so off the wall they were almost funny. One time, when I mentioned that I had not been able to leave the house for sometime, she said "well, I'm sure you have plenty of time to get some things done around the house. Why don't you get the walls painted?"! Huh? I could barely get out of bed and when I did so, it was to move from my bed to the sofa in the family room. Years later, she had a bad case of the flu followed by bronchitis. She was sick. After a week or so, she called to tell me that she was still so sick that my aunt was bringing her and my dad meals because she was too weak to stand up in the kitchen long enough to cook. Hey, Mom...that's been me FOR YEARS! Where's my meals from well wishers? Fortunately, my family never minded eating a lot of frozen food.

I also had a very well meaning friend. She really, really tried to understand and she'd call everyday just to chat and help me feel included. Her favorite thing to say was "I KNOW just how you feel...I'm exhausted, too. I got up today at 6:00 AM, got the kids off to school, went to work (she was a teacher), got off, picked my son up, went to this store and that store, came home, cooked dinner, cleaned up, went to this event or that event, came home, did laundry and now I'm totally wiped out". Yeah. I'm "totally wiped out" from getting up and trying to get into the shower. She meant well, though. She really did. Trying to empathize in her own way.

As to the "getting older" stuff? You know, this maybe says a lot about me, but in many ways, I'm kinda getting a kick out of seeing other people my age start to also develop chronic complaints that force them to at least slow down. Feeling rather superior again, as I've already dealt with all of this and have become somewhat accustomed, although I do still reserve my right to make my own complaints.

[futurehope]

POTS can be severely disabling. When your autonomic nervous system malfunctions, it has a far-reaching impact. As a matter of fact, one study showed us being as disabled as someone with chronic obstructive pulmonary disease.

People do not realize the severity and impact of "not being able to be upright".

We may or may not be in a wheelchair. Many are not. We are not walking around with supplemental oxygen, though maybe somebody on this forum is. There is nothing showing and no knowledge of the impact.

We're blessed to have each other on this forum because we all can relate to feeling ill frequently.

Anyhow, once in a great while, my husband gets tired, or my 84 year old mother gets severely tired, in which case I sometimes say, "I feel like that much if the time." Healthy people cannot relate to feeling poorly much of the time. They may feel poorly when they are sick with something, but it goes away. For us, it does not go away.

I can honestly say that POTS has pushed me into feeling similarly to being an 84 year old. Isn't that incredible? And I'm 58 years old.

Anyhow, my own experience and opinion is that only on rare occasions do I try to describe how disabled I am. It really serves no purpose to relay this because usually people do not understand and they don't want to hear it (for whatever reason). Also, I prefer to be in a good mood and to relate to people in that mode, but that's just me. Nobody really wants to hear of my difficulties unless it's someone who has a debilitating condition and needs someone who understands. Even then, I tend to hear them out without relaying my own daily struggles. But, that's just me.

I have "come to terms" with this condition by realizing that my personal struggles have put me in a unique position of being more empathetic and understanding towards others in their time of need. And I try to use that perspective for the good of others. I prefer helping others emotionally if I am able, and "forgetting about myself" if I can. After all, even I do not really like to think about my disability. I prefer to think about my potential to help others.

[erikainorlando]

Thank you all.

I was having a day yesterday. My son asked me if I was to die where he would live. Now...I don't think I will die anytime soon....but he is worried. He is 11 and I have been very ill two times no in his young life. I just cried and cried and got so mad at being sick...mad that my 72 year old mom can ride a bike with him and I can't...bla bla bla.

Then I tried to complain to a friend..you know the rest. I like waht Futurehope said...about coming to grips with it. I think it is coming to an acceptance and then finally a level of graditude for whatever good we have...but soedays are easier than others... somedays it is just plain gripping me!! But today is a new day...thanks for listening.

Erika

[babettess]

I know how you feel. Both my 67 year old father and my 64 year old mother are healthier and more able to do things than I am. My mom is a massage therapist and gives on average 20 one hour massages a week! I can't even drive to her house to get a massage let alone give one. My dad just worked 12 hours a day for 64 days straight and still felt good enough to go fishing 47 of those days.

It is difficult to look around and see what other people are doing that we would like to be doing. I'm still trying to come to grips with my limitations myself.

I have two friends and my husband who get the real truth about how I'm feeling. When everybody else asks how I'm feeling I just say,"Hanging in there!" and let it go at that.

So hang in there!! You are definately not alone!

Babette

[It'sMyLife]

...You spoke my thoughts exactly - are they tired of hearing from me that I do not feel well? Because I am sure tired of hearing myself say it, and even more so of having to feel this way! It is confusing for me because on one hand I feel like I want to give my friends a reason to talk to me, so I try to sound perky and upbeat on the phone, but at the same time I don't want them to think that I feel ok and am just making excuses for not being able to visit them. It is a hard line to figure out, and it's just another one of the challenges those of us with dysautonomia face...

~ Broken_Shell

I was just discussing this with a good (not just close, but good) friend of mine the other day. We were talking about how my DH probably gets tired of hearing me complain. I told her I totally agree, because I get tired of hearing myself say it. Then, I added, "but, if I don't complain, he assumes I'm feeling good and expects too much out of me." Sometimes I don't know where the middle ground is either. I suppose I could talk with him and tell him I'm going to try not to complain on the condition that he asks me how I feel before asking/expecting me to tackle a stated task all on my own.

I have also decided to try to update all of my friends and family on my condition by computer as well and then I don't have to spend precious chat time telling them where I am with my fatigue and frustration.

The one question that's been hitting me hard lately is when, or if, my DH and I are going to have another child (we have one DD born 4/2007). Some people I can be honest with as to why I'm having hesitations. But, with mere acquaintances I find myself unsure of what to say. I guess I just feel inadequate as a woman simply saying one's all I can handle (when, in all honesty, one's too much most of the time). I find myself telling people-and it's what I told people before my diagnosis-that I'm just not a very high-energy person. I try to make it sound humorous.

I, too, am very grateful I have the people here to relate with. If I had been going through this as part of my mom's generation, I don't know who I'd turn to for support.

[Kyler]

I feel your pain but in a different way. My 12 yr old son just got diagnosed with POTS June 2nd. It consumed my life for a while but we are adjusting. I was accepting it but then it changed and then it changed again. It's really hard to accept something that keeps changing.

I was also wondering if my friends and family were tired of hearing about it but I feel like I need to update them because they may have to babysit Kyler at some point when he is not doing well-I have a baby on the way. They don't get it. My best friends Mom told me that it's just a little tachycardia and told my husband at a family cookout that I was being overly dramatic and paranoid.

I have gotten several replys like " he looks fine to me" or "all growing kids are tired". I have asked them how many times their adolescent has requested to go to bed at 7pm?? I have also showed some of them, like my parents, how to feel his pulse of 200 when he gets out of bed in the morning.

I took him to the doctor 5 years ago because he was so tired and had what i now know is heat and exercise intolerance and they said that he was just growing and he was a little bit chubby. Then 3 years ago he started getting a headache only when he stood up after sitting and they said he was growing and he may be dehydrated.

I feel like strapping a heart monitor to his chest so that people can see that there is a problem. I am thankful that he can stand and walk very easily if he is medicated and hydrated but outsiders don't see him sleep for 14 hours after just 1 hour of playtime in the pool.

I am assuming and preparing for lots of issues when he starts school. It ***** that there are some instances where you have to explain it to people that don't get it and make them get it.

I have been trying to talk about other things to my friends and family but everytime i talk about my son it pertains to POTS?? I figure Oh well for them at this point. I have listened to them babble endlessly about the most trivial things in the world so turnabout is fair play. That sounds mean but so are their comments.

Hang in there and be strong.

[erikainorlando]

Wow worried mom...yes...just a little tachycardia...can make one feel really bad!! I am going to say a special prayer for him tonite..thank god he has such a caring mom.

[Rachel]

Hi Erika,

Big hugs for you. I'm sorry you are hearing insensitive comments. That happens.

A lot of people have said stupid things to me. It comes from friends, family, acquaintances, medical professionals, strangers, everyone. Usually the stupid things are said out of ignorance. People just don't understand. Sometimes it hurts, and I have a good cry. Usually I am able to just brush it aside because, in general, they really don't realize what they are saying and don't mean to be hurtful.

I don't usually volunteer information to people because I don't want to bore them or complain, but if they ask, I will tell them anything they want to know. I give simple and concrete answers to most people. It's hard to explain dysautonomia to someone who doesn't even know that they have an autonomic nervous system!!!! I give simple definitions and explanations. It helps people to understand, and to be at ease with asking questions if they want to know more.

On most days I don't really think about how awful I feel. I never do feel good. I have a new normal now. I've gotten used to my life, accepted it as it is, and I choose to enjoy it to the fullest. Coming to grips with it all has really helped. This is normal for me now, so I count my blessings and enjoy my life. It's a hard life compared to some, but it is a very easy life compared to many others. My illness is definitely something I deal with each day, but I work hard to not let it define me. Accepting it and being thankful for what I have has helped so much.

Need a laugh? The funniest thing happened a few months ago. Someone asked me why I was in a wheelchair, and I started to go into my explanation of, "My autonomic nervous system doesn't work right. The autonomic nervous system...." but before I got any farther, he stared at me with his eyes wide open, totally shocked, and said, "How do you LIVE?!" Turns out he is going into some sort of medical field, and had recently been learning about the ANS. So he actually knew what I was talking about, and was stunned that I was doing so well considering my ANS didn't work right! My husband and I got a huge kick out of that. Usually people are confused and don't get it, but we'd never had anyone be confused and shocked that I could still be alive with a messed up ANS!

Hang in there.

Rachel

[ladyt]

hi every one..=)

hope u all have a nice day...

My boyfriend have tryed to make me talk about me illnes for yrs. And i am more open. How is people to understand if one dont tell, but at the same time people dont understand.. So i try to make it a rule to answer if people aske, and if its natrual in the convesation.. But i dont like it when people i dont know start asking intimit question about my health, even befor knowing my name.. Ore maby being friends of my parents and probly hearing about it from them.. I am more than my illnes..

But my illnes form my life also.. thats ust the way it is.. I have come to terms that working is a long way of for me, and that there is a lot I whant to acomlis befor that.. Like a more stabel health, a sosial life of sort etc, being abel to take a shower etc.. Now i do stuff whit litle or no time limit, like knitting and stuff.. People seem to have a hard time understanding that i can do some stuff like that and not work.. But they dont se me the days I cant even think a litle..

that was a bitt funny, latly some have given me advise about controling a running mind (like people whit tendensie to worie or anxsieti has), and I have to tell them that i dont have that problem , a really have the opisitt problem, my mind dissipear.. and its happening right now..

so so long u all..=)