Lecture Coming Please Help

[lieze]

My mom is off on an all day shopping trip with her friends and it's my dad's job to give me a lecture today about doing more to help.

I'm not sure what the best response is...

We have a huge gap in understanding.

I guess I need to work on letting them know my weaknesses and I haven't like standing.

And for right now I am limiting my activity due to my weight trying not to burn calories.

I don't even shower everyday because of the energy it takes.

But like last night my dad trapped me in the kitchen as I went for food and was telling me this long drawn out story with very little detail and I should have tried to let him know I

cannot stand.

Then another trip I was watching the kids ride there bikes from a lawn chair I was sitting in and I had gotten up to get food and he went to take the trash out and was standing in front of my lawn chair forever and I could not sit back down.

So my mom is probably both overwhelmed with the task load of taking care of us partially

but I think there is just an element also of not understanding too and being in two different worlds. She says she resents me when she is working and I am lying or sitting.

I don't know what the best approach is...it seems like trying to educate them would be the

kindest.

I think part of them wanting to assign me tasks is a control issue and that they still view me as a child.

I don't think they have any concept of where I am or that I wonder everyday how much longer I'll live and plan to just try to ride out my next episodes that seem allergy related or POTS related and if I die just know that it will all be over then.

It's what it feels like is happening every time.

My mom camped all weekend and then planned a shopping trip the day after she got back.

We are so far apart it isn't even funny.

I don't know what to say...

Can we hire help or get some friends to pitch in and help put with tasks?

She wanted money and we gave her that...it seemed like a big deal like drama....I think part of that was about control too....and even though we gave her money she makes statements like this is all the food we have so we have to make do til Wednesday when I know the

money we gave her exceeded the groceries.

I guess I have to be happy I'm doing as well as I am.

I'm not in pain everyday and I don't even have an episode everyday...

I think going home right now would be a huge mistake.

I don't think I've gained a thing despite my effort.

They just really don't get this whole thing and I don't know what the best way of bridging that gap is.

I really don't.

If I shared my true feelings I think it would just hurt them back the way I feel hurt and I don't

think it would help any.

I feel hurt.

I am their daughter.

I am in a very sad place in my life where I feel like I've lost my life.

I can't even take care of my own children.

If I could cook, do dishes and laundry, mop floors, do grocery shopping...I wouldn't be here.

I don't want to collapse and die in front of my children with no other adult around.

As soon as I gain a little weight and start to do normal things I just lose it all again.

I think I need a buffer like 5-10 pounds for it to be safe.

I don't know what to say and the talk is coming soon...help.

[sue1234]

Leize, I am sending you a (((hug))). Is there any way you can go to a new doctor, like an internal medicine doctor, that might look at your case from a fresh perspective? Not so much from a POTS issue, either, but from the fact that you have difficulty reacting to foods, and everything snowballs from there?

Can you afford to hire someone that comes into your parent's home and does some cleaning, etc. for a few hours a couple times a week? If so, maybe that could "represent" your share of pitching in, since they misguidedly feel you should be pitching in. People just don't understand what our bodies go through with the overactive sympathetic system just from walking to the bathroom, kitchen, etc.

I forgot to add, my parents don't truly get it either. They will turn the a/c down for me when I visit, as they know I am so heat intolerant. But, besides that, they NEVER ask how I feel, they NEVER offer a meal, they ALWAYS ask if I want to go eat at a restaurant for my birthday--I have to tell my mom that I can't, because I can't walk through the large area, and secondly, I can't sit up in a straight chair. I haven't eaten in a restaurant in a few years. But, she asks me a couple of times a year, and I have to once again say NO, thanks anyway. And after all that, she doesn't even offer to pick take-out up and bring it back. The only choice is go eat AT the restaurant, or no meal at all. That birthday non-gesture haunts me every year.

It's like I've said before, I would do whatever I could to help any of my grown children if they had health issues. And, I would ask them to tell me what I could do to help their day go better(in what limited things I could do, I guess mostly companionship and emotional support).

[lieze]

What a messed up situation because I feel like I need to put weight on before I even attempt a trip to get a real diagnosis and possibly supporting diagnosis for disability that will help me out financially.

I have had no income since December.

I am in debt afraid to even look at my credit card balance...and have unpaid hospital bills.

So I really don't have money to hire help.

The other thing is my mom may not want someone coming in to do cooking or cleaning.

She wants to do it all her way.

There is also the problem of the control aspect of this...she wants me to do the tasks...it makes her feel in control to have it coming from me.

When I was here two years ago after the second week she said she wanted child support.

Well that was like what??? I am their mother?

So I offered grocery money I still had a job then.

She got mad and said she didn't want my money she wanted my husbands.

The whole way they view things is colored with resentment and negative feelings so the only way they can appease that is to gain some type of control over the person they are feeling that towards.

Wow! How did I end up in this situation?

I would request their pastor or someone to come in and help mediate some of this but I am worried it would just make them angrier.

I am not just a grown child that returned home with her kids and have no desire to contribute.

I guess the question is what can I contribute?

I don't have money any more...

I don't have physical capacity to pitch in...

I don't have a long list of friends myself who I can ask to help out.

The good friend I do have is a single mom who works full time and is exhausted herself.

The smartest thing I can do is eat!!!

Save my strength try to get myself up on my feet so that I can once again walk away from here and for a period of time be independent again.

[potsgirl]

Lieze~

Why do you think you're going to die? As far as I know, no one has ever died of POTS. So sorry you're feeling so badly right now. We need to think of a creative change for you that isn't home or your parents. Would you qualify for home health care coming in during the days/half-days? This has really helped my mom with her Parkinson's.

Best wishes to you and God bless,

Jana

[radiohfan23]

Hi Lieze,

I wish I could do more to help directly as you definitely could use a break... I totally understand the feeling of waiting to die. I know it sounds awful to say it but for me that has been the reality of how i'm feeling. Although there is definitely no connection to POTS being fatal thankfully, it does often feel like you're just deteriorating to that point. So I totally understand where you're coming from.

One thing I would recommend is to maybe try to get them to watch the changes movie. I'm lucky to have a loving and supportive family who "understand" this condition but watching this was truly more productive than me just explaining that i'm always tired and dizzy and feel very ill. You can find it on youtube if you search for the full title:

CHANGES: Pt. 1, Living with Postural Orthostatic Tachycardia Syndrome (POTS) part 1

There are three parts.

Best of luck, I'm thinking about you.

Joe

[lieze]

I think that I am going to die because I have periods where my heart just feels so weak.

It comes out of the blue with sometimes minimal exertion and I feel like I'm not getting any blood flow to my brain.

I just sit back and deal with it...I know many here deal with worse. I also get chest pain and fast heart rates that feel out if control and I worry I'll go into cardiac arrest.

And then the episodes after I eat where I get very dizzy and out of it like I'm just going to float away.

Or I will suddenly feel everything tightening up like I can't breathe.

Or I worry I'll continue to lose weight or not be able to gain and die due to complications of that.

I don't like what I'm seeing in my lower back upper hip area at all..I'm not used to seeing bones sticking out there.

: (

I am having to choose to eat and try not to worry about reactions. I don't want to starve so I'll risk food reactions.

[Olive]

I have found that having my husband read this web site has helped. He does still try to encourage me to do things which sometimes makes me feel guilty that I can't always do it, but I try. I would think education for them would be the most important. I know you hate having to rely on others and would love to be independent. Good luck.

[HopeSprings]

Having them watch a video is a great idea or how about printing out some articles for them to read? I recently e-mailed a link to Dinet to a close relative and asked to read about POTS -- my explaining it doesn't seem to be working.

[lieze]

Thank goodness the lecture hasn't happened yet...

God intervened-the freezer went out so my dad has been occupied all morning trying to deal with that issue.

I think maybe I will try to say as soon as i gain weight I'm sure I will feel as if I can do more but right now I feel like I'm doing all I can do and maybe that can be a lead in into suggesting to watch the video.

Maybe discuss options and limitations for me and the kids.

I imagine their desire for me is to live on my own be totally self sufficient and my mom added this little tidbit.

I am to remain celibate so that I can go to heaven with them. I guess that's okay since sex scares me too.

It makes my heart feel really funny and I worry that it could kill me too.

What a mess.

I have just had to accept that my life will never amount to anything.

My childhood years were plagued with these overrestrictive parents who caused much of the psychological issues I have now....I tried to rise above it, be independent.

I made a poor choice as far as a husband and ended up in an abusive situation and then got sick.

What a mess that left me right back where I started with four children.

I don't see a way out right now.

I am very passive with my parents.

I cringe as I hear then saying very unhealthy things to my kids and I try to compensate as much as I can.

If they knew my true feelings they would probably kick me out.

I don't think they want to be challenged-they know their way of life is right and everyone else is wrong.

I go back and forth about 50/50 with just wanting to give up and with wanting to fight to get back everything I had.

Freedom away from this mentality.

Against being dependent on it and the same for my kids.

I know it isn't all my choice.

But I can try to fight if I find the will to do it.

I learned decades ago that the best response to them is silence.

Maybe I was wrong maybe there is another way but there is no way they are ready to hear my thoughts straight up.

[Olive]

I pray for you and the pain your in. Don't accept the way things are now. Don't give in. Fight to get that independence back. You are still young and have a lot of living left to do.

[janiedelite]

I understand that you are having financial issues which make getting to a doctor difficult. You said that you're waiting to put on weight before you attempt to get a real diagnosis. But you've had such a hard time putting on weight; maybe getting a doctor to help get to the bottom of things will help you to put on weight and manage your other symptoms. You mentioned in another post that you've had to go to the ER quite a bit which I'm sure is spendy! If you had a doctor on your side, trying to help you, then you may have a less expensive resource during times of crisis.

ER docs are trained to know a little about a lot. They won't know how to really diagnose you, but will do what they can to alleviate any life-threatening symptoms. Getting a good doctor who can investigate your illness sounds like what you need the most. Then you hopefully wouldn't have to worry about dying from the episodes you currently experience.

I'm sorry that your family is not being supportive of you. Sending a prayer that you find a way to improve your situation soon.

[lieze]

I failed to update that I did get cortisol levels tested and a myriad of thyroid levels and did a follow up with an endocrinologist.

Basic tests reveal everything is normal-so I did what I could in that area.

Digging deeper will take going to an integrative doctor most likely, POTS specialist, or even trying to find out if MCAD or mastocystitis in an issue.

That is going to require travel for me to do that.

And I need everyone's help to accomplish that just to get through the day in day out of taking care of four kids.

My parents really believe it's the stress of my marriage that made me sick.

I guess they think because I am not living with him now I should be better and ready to do more.

Maybe that's where some of the confusion is coming in...if they thought just getting me out of that situation would perk me up and i'd be my own self again and that's not happening?

So yes I'd like to not give up and continue to pursue a doctor that might be able to health.

Preliminary tests are just coming back normal which I am thankful for.

I am kind of stuck not being able to do the test for carcenoid syndrome because there are foods that have to be abstained from 3 days prior to the test.

My potassium was low and the one food was banana.

I don't have another food item to replace it with yet in order to do that. I'm not sure I can risk losing 3 days worth of calories from banana with my weight so low.

So I'm stuck at the moment until I find a way to do that.

[MomtoGiuliana]

That's good that some things have been ruled out by doctors. We all know it can be a very slow and difficult road to diagnosis when a condition is unusal or not straightforward. Do you have some friends or other family you can ask for help getting you to a doctor (wherever that might be) since you say that travel is the obstacle? I agree with Thankful that it appears high priority to get a diagnosis as the weight issue could possibly be addressed by a proper diagnosis.

It does sound like your parents are confusing your mental health with your physical health and not seeing the physical health problems. Without a diagnosis that makes it even harder for them to understand. Have you been diagnosed with POTS? If so, I agree that showing them the video should help them. (It helped my dad, who was previously questioning my diagnosis and claiming that all was wrong with me was a thyroid disorder and my doctors were over-dosing me with synthroid).

As far as the test that requires abstaining from certain foods for 3 days it seems that this is where you need a doctor's help. For example, if your potassium is low and you can only eat bananas and you have to abstain from bananas, there are potassium supplements that can be prescribed. But only a dr can determine how to handle this and write the prescription or otherwise advise you. It seems like you are trying to go so much of this alone--you really need to find a doctor who can help. I know, easier said than done. But I hope someone in your life can help you get to the doctor(s) you need.

[lieze]

At the two appts my mom did take me too she kept interrupting to gossip about my mother in law and husband. I kept having to redirect and remind her we weren't there to talk about them that the appt was about me.

[lieze]

Guys I just got in the scale and you won't believe it!!!!

I'm up to 89 pounds.

My goal was 88 and I've been eating nonstop today.

I just went for it thought well if I get on and it's back down to 86.5 I'll just be glad it hasn't gone lower.

It's working !!!!!

I was thinking once I hit 90 I might be good for little errands and things like that.

The sitting around like a couch potato is working to slow down my metabolism enough to gain.

Thank God-HOPE!

I'm not gonna stop I'm going to keep on eating and try to add more foods to my diet.

[Yolaclover]

Lieze, you can do it!!!!

You are so close to 90, and 92 for that matter. Keep it up! You are strong inside it's just so hard because you are still finding out what you are dealing with. I think when you have a firmer diagnosis and a more structured treatment plan things WILL come together. I could really relate to your post. It's like your reality is pretty much beyond your parent's comprehension. They just see you resting and think a certain way about you. Sometimes even when we want to push ourselves as hard as we can to do everything that is expected of us, we just can't, no matter how hard we try and how badly we want to fake it until we make it.

Let's think about improving and remission. even if it is just a tiny speck on the horizon, an impossible idea really Let's see how we can try to make it our reality, or come as close as we can to functioning in a way that we can feel good about our selves and our lives.

xxxxxxx

[sue1234]

That is a big accomplishment for you! Yay!! And I'm hoping a few more pounds come your way.