How Do You Deal With This...

[Kujiforo]

I am so sick of being called lazy, irresponsible, stupid, ignorant, insert other hurtful term here...and so tired of being told to 'get up and do stuff for yourself, get a job, etc.'.

I am so tired of family members that drag their heels when trying to help. They eventually help (sometimes...), but it takes every ounce of energy for them to do so. I'm disgusted with being called crazy, and sad at the fact that they mostly think I do all of this just to get someone to wait on me hand and foot.

The energy I once had is gone. My heart rate stays so high it feels as if I run miles even while laying or sitting down. My body reacts as if its been hit by a truck and doesn't have any life left in it to move with. I used to be so hyper and active. But above feeling well, I wish that, even with this sickness, whatever it is...I wish I had just a little support without being yelled at or pushed around (literally pushed sometimes). They don't understand how much worse it makes me feel. Or maybe they do, I don't know. Today I'm at my wits end, so much that I am crying, being yelled at by my mom because I felt so bad I practically passed out on my bed and didn't wake up in time for something. I'm glad I'm at least alone at my house instead of being over at theirs where there is physical violence as well. But i also don't like being alone. Because I feel so weak and hurt so many places right now... I want some food (I'm starving) and can't go fix it myself....I'd also like to lay down, but I pretty much collapsed in this chair and haven't moved since. I wish my fiance' who is in England will get here soon. He's pretty much the only person who whole heartedly supports me, even if he can't understand my sickness first hand.

How do you deal with being so sick and having little to no REAL genuine support?

[Christy_D]

I'm sorry you don't have the support you need. I don't have POTS, but my son does. I can't imagine how he would manage without our assistance. He has gotten better than he was, but still his mornings are very rough.

I can only hope that one day, your family will come to realize your plight and have more compassion. Try to focus on the positive, because when I dwell on the negative it zaps so much of my energy and I know you can't afford losing that energy.

When I find a saying or quote that makes me smile or helps boost my mood, I type it up and print it out and post it on the fridge or wherever I might glance and see it to help keep my spirits up.

Christy

[Griffin]

My heart rate stays so high it feels as if I run miles even while laying or sitting down.

My family were like this until I had my racing heart properly diagnosed. Tachycardia is something that needs taking seriously.

[lieze]

It is a very isolating feeling.

I cried and felt so alone and that no one "got it"

I was really concerned that I had adrenal failure. I had read a little about it and was worried that if I did not get some type of treatment I was going to just get much worse but I couldn't imagine that.

My parents basically refused said they weren't taking me back to the hospital.

I had gone to their house with my four children because I was suspecting we had mold here and we did.

I was just so horribly crushed by their behavior towards me.

My mom stood and screamed at me that I was anorexic and that if I didn't eat I was going to die.

My dad came in and screamed at me when it was dinner time that I had to come to the table and eat. When I told him I couldn't he said it was about respect. They just had no idea how ill I felt.

She started announcing that all my dad's sisters had gone crazy as soon as they turned 40.

I told her I felt as if I was going to die and she just looked at me with a half smile and said, "We're all going to die." She was very unsympathetic about how it made me feel and how scared I was.

I tried to run the vacuum and it totally laid me out in the bed with my heart pounding.

I told my dad I could not return to work and she came in and said, "Oh yes you will go back to work." It was like something out of a bad movie.

I couldn't even drive myself to work. My dad had to drive me and after my day I was spent. I would go back there and collapse and sleep. Then my mom complained to my dad and said with an attitude,"She just thinks it's okay to come home and sleep when I've taken care of those kids all day." I didn't even have the energy to fight them. I was exhausted and the words I was hearing hurt so much.

They would get up in the morning and sit at the breakfast table and gossip about me.

My mother told my dad she thought I was just doing this because I was jealous that she had diabetes.

My dad came the closest when he said he thought I needed some type of rehab and that I probably needed to give myself more time to recover from the ablation like maybe even a year.

Most everything else they said was so far off and hurtful I didn't even know how to comprehend it.

I ended up running away from there and going to my in laws. I was still working and had a day off. My mom had announced that she was just going to sit around like a princess and let me do everything that day. Well I had a doctor's appt in the morning that I went to. My son's birthday was the following day so I stopped and brought some presents for him and went back to their house. Just my dad was there with the kids. My mom had gone to get her hair done. He said we needed to talk and I said okay. He seemed like the more rational of the two. He told me I was taking advantage of them. That I made good money and he knew it. (Isn't that a good thing) I had offered them money for groceries and they said no. I tried to remind him that I came there because I was sick. He obviously couldn't recognize how much I was pushing myself at the time and accused that I was a bad mother, that I was spending too much time on the internet, that he didn't care if we did buy a new house or get our mold cleaned up he was not letting me have my children. Well that was enough for me. I told him that things were getting too crazy around there and I was leaving. I told him I would be quitting my job. And not leaving the children there any more. They complained my house was a pig sty. It is not. I have four children. I mop my floors and clean my bathroom every week. Do laundry and dishes daily and at the time I was working full time. He is just an old man that has no clue how hard it is to keep up with everything and try to take care of my children. He had also threatened that he was going to make my children transfer schools that he was not driving them to school. It was a total nightmare. I could not sleep that entire night. I bawled until my eyes swelled up and I could not imagine being hurt that way so deeply by my own parents.

It was a horrible experience and I'm afraid I will never feel the same about them.

If I get really ill I don't want to go there. I would look for someone else to watch the kids and go to a nursing home first. I guess there is no way I can know for sure but that is how I feel right now.

I'm sorry you're feeling so isolated.

I know how scary and painful it can be.

[Kujiforo]

@ Lieze - Yes. Its so hurtful and you feel so alone! If not for my friends on the internet, I think I'd have died. They are my ultimate support system. My family still thinks I'm just crazy and expects way too much out of me.

And yes, Tachycardia seems to be the ultimate symptom that leads to everything else: sweats, fainting, short of breath (thats my scariest symptom...I REALLY hate it), feel like my chest is being crushed. It kind of feels like my body is running inside (like physically running miles and miles) but my actual physical body really isn't. That's the best way to describe how I feel like. It feels like I'm running and out of breathe but my body can't ever stop to give me the rest I need.

With people screaming at me, my heart rate elevates even more. The doctors have already TOLD THEM to not put me under any stress whatsoever, until they find out the underlying problem. I'm not even supposed to be bending over, much less working for them and carrying their groceries in, etc. or even cleaning my own house. I've reduced showering to once every other day due to me being so sick after I shower...just saps my energy right out of me. I just think my family brings on anxiety/stress that I can't handle, makes my attacks worse.

I really wish they'd take the doc's advice to not aggravate me and make symptoms flare more.

[Birdlady]

Wow my heart goes out to those of you who are dealing with not only unsupportive family members, but downright abusive family members! No one should be treated like that sick or not sick! ((HUGS))

My family even though they aren't always supportive, are not abusive. Sometimes they just don't get it and expect me to do things that I can't do, but I know that this is a really hard "illness" to understand and they aren't purposely trying to hurt me. I think it helps that I don't really talk them about my problems though. If I called them every day to tell them how terrible I felt, they'd likely get sick of me REALLY fast. I wouldn't blame them!!

I don't really have any friends to talk to about these problems though. No one wants to hear me complain every single day! I think that's why groups like dinet are growing so much. It's great to be able to instantly 24/7 get some support even if it's from total strangers. We all know what each other are going through to some degree. No one should ever feel isolated!

[HopefulLady]

I am so sorry for anyone who has had to battle this alone. I too have had family who refused to help me they insisted that I was having anxiety attacks when I knew something was very wrong with me. The medical field was against me my family was against me. I started to feel like some sort of nutcase. I can't tell you how many times I was symptomatic and cried to my mother to please help me and she just looked at me and said your just anxious . Then because I was having a hard time working and sleeping my life away because I was so worn out from tachycardia I was called lazy keep in mind before all this happened I worked in corporate america as an account sales executive I was always active and loved to work. Basically I have been my best advocate and support system through this whole thing and have just accepted being alone. Now that I know what's wrong with me my family is much more supportive and they have told me how sorry they are. But It's hard to trust them the way I used to. I just remember how mean my sister was to me. And how her and my mother would gossip behind my back about how I would sleep all day and wouldn't work. I am also a single mother so it has been hard every bit of energy I have must go to them because they come first. I can remember the nights of being so symptomatic dragging them into the ER at all hours of the night. I was so terrified not knowing what was going to happen to me or where my kids would go if something did happen to me. My kids mean more to me than anything in this world and all I could think about was them. My children are my strength they keep me alive and going. I thank god everyday for them because they are the reason I have fought so hard to get to bottom of what was going on with me. I have been alone for a long time and have become so happy and content being alone with my kids. I don't know how I have made it this far all I know is GOD is good. And he has pulled me through this and he has always made a way to cope through this illness. I truly believe god has compassion for the ill. I may not have everything in the world I want but I always have what I need. And for that I am truly humble and grateful. It's sad that I have come to a point in my life that I would rather be alone than have my family around who will only make my illness worse. Sometimes you have to rid yourself of the people who bring you down. Being sick with this type of illness you cannot afford to be stressed out. I truly feel for you guys my heart just pours out with compassion for you all. Stay strong you will endure just keep your faith and know that after every storm comes a rainbow. There is a reason for every trial and tribulation we go through. Our suffering is not in vain

[scarfgirl]

I'm sorry. I recently got out of a superficially supportive but ultimately negligent relationship, and no one should have to go through that. It's so hard, because most of us need SOMEONE, our illness is too difficult to handle on our own, but you can't force people to become loving and supportive no matter how much you need them to be.

[erickamcc0523]

Oh, my heart just cries at hearing these stories. I can't believe just how cruel and dense people can be at times. I'm glad that we all have DINET (even if I don't post all of the time, I'm very glad it's here), because at least here, there is great support.

My parents haven't always been the best. They fully agreed with my (now former) psychiatrist's diagnosis of bipolar disorder. Yes, I was having mood swings, but you would think that after 7 years of trying different medications and combinations and tweaking a little here, and adding this to take care of the side effect of this other medication, and etc... and the fact that nothing was helping any with decreasing mood swings, and in fact was making the situation much, much worse, because now either I'm sleeping all of the time, or I haven't slept in a week, and of course I'm hallucinating because that's what happens when someone is severely sleep deprived! Even when I insisted that there was something else wrong, I wasn't believed, given my medicine, and patted on the head. From the age of 15 until it was removed 5 years later, I was at the ER a minimum of 5 times a year because I started throwing up constantly for several hours (at least 6, and about every 10 minutes), and couldn't even hold water down. And getting my mom to take me to the hospital was like pulling teeth. "Oh, take this phenergan and lie down," "But, I can't even hold water down, I can't hold a pill down," "Well, try really hard," "MOTHER, TAKE ME TO THE $#&*(#$@ HOSPITAL NOW!!!". She would then, but only after she told me just what she thought why I was throwing up and in screaming pain.

She did apologise when my gallbladder was taken out, but I still am very cautious about sharing anything about my health with her. Maybe if I took her to an appointment with me and got my cardiologist to describe POTS to her, she might understand it, and might even believe me. I don't, however, undertand why she doesn't. I wasn't the one that just blew my symptoms off. Ok, so for 5 months when I was in high school, I was convinced I had cancer (I knew something was wrong... I just didn't know what, and I hadn't even started reading much about the horse diseases (you know, the common ones doctors are told about in medical school. "When you hear hoof beats, think horses, not zebras") and I didn't even imagine that I would be such a medical zebra. And I do have an excuse why I was so obsessed with it. Having had all of the bizarre POTS symptoms, and most of them are severe enough to make me think I was dying, I think that entitles me to obsess.

Maybe she's getting somewhat better, because she is going with me later today at my cervical spine medial nerve block injections. And she did offer to give me one of her klonapins on the way there. She still rolls her eyes and will change the subject when I do bring up my health (again, another reason why I don't talk about it with her), but she isn't verbally attacking me as much as before. And just knowing her personality, I don't think she'll ever stop that. So, for what's left, I just have to find some way of dealing with it so both of us can keep our sanity. I just wish I knew how.

[catina1996]

We know how hard it is to deal with unsupportive people around you. We ordered the info movie Changes and had it mailed to their homes. They get curious and watch it, it makes them see what you have been trying to convince them of. Try it maybe it will help them understand the condition.

[MightyMouse]

I had decades of unsupportive family, as well as some who actively undermined me by telling other family members that I was not really sick and just a hypochondriac wanting attention. Eventually, a few members of my immediate family came around, and I can now really rely on them in a pinch, which would have been impossible even 5 years ago.

Hang in there as best you can, and I like the idea of sending them the DVDs b/c it's sometimes easier to see what's going on with a stranger than it is with a family member.

Nina

[houswoea]

I was at college when it started happening. My family was supportive, but I was so far from them. My support system at school told me I was insane, controlled by the devil (lol), faking, manipulating and my roommate even kicked me out of our room! It was hard, I cried a lot, I got depressed and even thought about suicide. Hard times.

The key to overcoming loneliness and isolation for me was to A. talk to Jesus, the only one who will ever really understand, and B. find a wonderful counselor who believed in me wholeheartedly and gave me a note of sanity for my doctors

No matter who you are, what condition you have, what you've been through, no one can ever understand your heart. They're not you. I've found that God can and does. That helps a ton! Friends and family come around :-P

[Kujiforo]

No matter who you are, what condition you have, what you've been through, no one can ever understand your heart. They're not you. I've found that God can and does. That helps a ton! Friends and family come around :-P

<3

I rely on God everyday, especially days like today when I feel so bad like I am dying, with high anxiety because my body is in so much pain. HE is the only one who does know, even when doctors do not know (I have yet to be diagnosed with anything other than GERD). HE cares when others do not care. HE understands when nobody else can!

Right now I have this horrible crippling pain in my side. I don't know why. But He knows! And He has promised me complete healing in His time. All He expects of me is to wait, patiently, upon Him and trust Him. I pray for so many, and many others pray for me. He will bring each of us through. Just have faith.

[jimells]

I have my own "family" now, one that is not related by blood. It's a few friends that understand when I have to back out of gigs at the last minute. It's hard to find people like that, but they are worth their weight in gold when I do.

The worst family member to deal with is my own former partner of seven years, who walked out a week before Christmas last year. When she left, I had no money, little fuel oil, and the electricity was about to be shut off. The Salvation Army bought me some oil, and after six weeks the state sent me a food stamp card. For part of the winter I was dumpster-diving for scrap wood to put in a wood stove, which I borrowed from a neighbor. It was a tough winter.

Now she is suing to have our mobile home sold out from under me so she can have all the money. I will probably have to deal with the law suit for years - the courts are as slow as cold molasses.

I was really upset when she left, but now I'm glad she's gone. She used to cut out help-wanted ads from the newspaper, even though I was already working as much as I could tolerate, which admittedly wasn't much. She used to tell me it was my fault I was rejected by Social Security Disability, and that I wan't trying hard enough to find a doctor that would actually try to find out what's wrong with me.

Now that I have Medicaid, I have a new PCP, but so far she hasn't really done much for me, except to order another round of the usual blood tests, which always indicate there's nothing wrong. She did prescribe propanolol for the migraines, but after 2 days at 1/4 the prescribed dose, I quit taking it due to itching all over so bad I could hardly sleep.

I had an appointment to see a neurologist, but that got cancelled, since she has cancer and is starting the "poison-you-to-the-edge-of-death" treatments. I certainly wouldn't expect a doctor to see new patients while suffering that misery.

Living alone is tough sometimes, but overall it's easier than dealing with other people. I keep a lot of food in the house, in case a bad headache keeps me in bed for a few days. When I'm too sick to cook, I eat a lot of toast, cheese, yogurt, bananas, and other food that doesn't take much preparation.