Explaining Pots To Someone Who Says To Ignore It

[roxie]

So, POTS is hard enough to explain to people but what about when you are talking to someone who as an equally severe devastating illness and they don't get the extent of your limitiations or think you're being a wimp?

I have a friend who has a mitochondrial disease called MELAS. She never talks about it but from what I've read it's eventually fatal and at times she has gotten very i'll. She even had a pancreas and partial intestinal transplant. But in between those times she pushes through everything and lives a predominantly normal life. She says some of her closest friends don't even know she has a disease.

She live on the other side of the country and so we really only talk online, since she moved 10 years ago. The probleem I'm having is she doesn't get POTS and how severe it is. She thinks I need to just push trough it like she does and that using my wheelchair is letting POTS win.

How can I explain POTS so she can understand why I can't go out everyday and go to school or work?

There are many people who have disabilities that ate able to push themselves and adapt to situations. It's a tremendously admirable thing.

I push myself as hard as I can, as I know we all do, but when the dizziness and tachy and all that yuck takes over it's does just that TAKE OVER there is no pretending it's not there. How do I explain that?

She'll say "well I have strokes and seizures all the time and still live a full like fainting shouldn't stop you".

I almost wonder if she exaggerates how much she can do bc if she's having strokes & seizures you can't be in public & hide it.

Back to my question, how do you explain it to people who think you just need to push a little bit harder bc they themselves push through things?

[lieze]

Well I think it's really a choice.

Part of me would love to push through but I really question whether we should be sustaining high heart rates for long periods of time and if it wouldn't in fact do damage over time.

So I choose to pace myself.

Do things at a pace I can handle.

When my heart rates are high I give myself a break wait until I feel like I can get up and do things and not be uncomfortable.

I don't mind pushing some but I do think that thinking about long term effects on your organs are a good thing.

If you had a set time to life for instance and it didn't matter what you did or didn't do then yeah maybe I'd say go for it. Do everything you can and throw caution to the wind.

We don't know that though and that was my question from the very beginning when I started having the wacky high heart rates I thought should I really be working and putting this much stress on myself when my body is not responding normally?

Every day I went to work my gut was telling me I was taking my life into my own hands and how could I do that to my kids? Was it really worth it to go and work 8 hours if I was going to drop doing it?

Obviously that is an extreme and that didn't happen but I did eventually back off on my hours when I saw that this wasn't just immediately going away.

I don't mind going in for maybe one 8 hr shift per week.

Even if I get some high heart rates I don't think it's really a big deal.

I would question though how much you could put your body through that and still be okay.

Also I don't think that strokes and seizures are good for the brain (understatement) to be occurring over and over. Eventually she could lose some function there.

I think she is making her own decision and we can respect that. She may know very well what her prognosis is and may just have the attitude that if she has a stroke or seizure today and it takes her then she'll know that she's lived her life to her fullest.

That is her decision though and she needs to respect yours.

As far as how to explain that without reminding her of her own situation-you would need to tread lightly.

Maybe you could stay with something simple and vague like I'm taking it one day at a time.

Good luck.

[juliegee]

I totally agree with Lieze. It'a a personal choice. Your friend choses to ignore symptoms and soldier on- great. You chose to lead a more cautious life, pace yourself, and use a wheelchair when necessary. Viva la difference. Explain that you feel absolutely exhausted from simply standing upright & THIS lifestyle works for you. Stand up firmly for yourself (no pun intended!)- we are holding you up in case . I would ask her to respect that you know what is best for you. Without that respect, it would be hard to continue the friendship.

By the same token, be sure to let her know that you respect HER lifestyle decisions. Very often opposites attract. Her courage, boldness. lack of boundaries due to health issues. etc. are probably a big part of what attracted you to her in the first place. While she may have been attracted by your more conservative approach.

Don't back down. You may have to let this friendship go if you can't get the respect you deserve. Sorry you are dealing with this. It's hard when friends don't understand.

Big Hugs-

Julie

[erik]

For one, POTS often bites back really hard when you try to push through it!

It is not the only condition that does this, I'm sure... and I'm not familiar with your friend's disease... but this is one of many considerations. One risks inviting a "downward spiral" if not cautious with things... and "pacing oneself" is often advised. If she can proceed unencumbered then more power to her, and she also deserves credit for the effort in doing so, no doubt. The unfortunate challenge with POTS is that there just isn't a direct "action" that can be taken to express one's "effort" or triumph! Sometimes it actually takes "effort of restraint"... which like most POTS things is quite invisible and unappreciated!

One might presume that she is making a well-intentioned effort to be inspiring (not only to you, but to herself as well). I think we all have to insulate ourselves at times... and the way we draw these lines often involves a bit of coldness or cruelty or just "unrealistic posturing" (even amongst friends/family where we'd like to pretend we enjoy full intimacy).

Like you say, she may not be as invincible in spirit & ability as she lets on. Who knows... perhaps her presenting herself in this manner could be helpful for her (especially if her eventual prognosis is dire). It may be something that won't (or shouldn't) be tampered with. If this were the case, it might just be a topic to minimize rather than either of you pressing until the other "gets it" completely. These things might also need to be "absorbed over time" rather than understood quickly. I know I have often down-played my situation in order to insulate other folks from it... either as a simplification, a courtesy, or to avoid driving them away. She could be doing a bit of that. Basically an odd "refusal to understand" can be communication that she "doesn't want to go there" in general.

I tend to dislike "psychobabble" and unfounded speculation, but I seem to have produced quite pile of it here for you to either consider or discard as you see fit! Hope there's something helpful in there somewhere!

[juliegee]

I'm waiting for the Dr. Eric Show - good stuff!

[Guest tearose]

ditto to what has been said and erik said it all so very well...

On a personal note, it was when I did ignore my dysautonomia that I did the most physical damage or suffered the worst and longest relapses.

It is due to my awareness now that I am managing some quality of life.

Just don't share your personal details with those who will leave you feeling like "you aren't__________" (fill in the blank).

Save your energy, you do not have to explain anymore to those who just don't want to see past their opinions.

[roxie]

Thanks guys! You gave me some thoughts and support I didn't think about. I think the best I can do is just say, "I choose to pace"

[jem15]

For me, I was always a "pusher" cause I had no choice. I had to finish school, work, etc.. I needed to support myself, and I went undiagnosed for 15yrs. So when you don't know why you feel the way you do, you really can't get disability or anything else. The problem is, with POTS, when you over push, you just keep getting worse, or at least that's been my experience. So each year I'd get progressively worse. I'd go to work so sick,not thinking I was going to make it thru each day. Somehow I did, and as I got sicker, I just kept saying to myself keep going, and took pride in the fact that if i pushed, though i'd feel sicker, I still somehow got by and made it thru. i just had to modify and/or drop the nonessential things, the social activities, hobbies, etc.In year 13, I got cancer, so I wonder sometimes if it was the year after year of pushing though my body told me not to, so ha, Lieze, you may be onto something;-) And now, I'm unable to work or drive. Now no matter how hard I push, i can't get thru "normal" functioning anymore... and when I "push", it's just to get thru simple things like lunch with a friend, a doctor appt, a shower, etc...

Anyway, if you want to "go there" with your friend, cause like Erik said, it may be something you might not want to push if her condition is fatal, she may always feel like your condition cant compare with hers and her ability to push thru and maintain some normalcy gives some sense of control in an uncontrollable situation... it did for me too.....

but when other people say things like that to me, I try to explain how no matter how much I want to do something and want to push thru, "pushing" too much, can just make you continue to get worse. So if you over push, you'll be able to do less and less despite pushing, and the only way to improve functioning is to listen to your body and learn how to balance/modify things. So i tell people it's a tricky thing i struggle with everyday, finding how much i can push, without losing more functioning. I tell people everything i do is forced, nothing is easy, i have to push thru everything, so yes, they are right, i do have to push, it's just a question of how much is too much and it can vary day by day, it's the nature of the disorder.

Also, in response to the wheelchair use, I'd say, I know it seems like i'm giving up, but ha, it's funny, that's actually me pushing, because instead of just staying in bed all day, or not participatin in certain activities, that's a way i found that helps me "push" thru things, so that i can still be as "active" as possible, w/o completely giving up when I feel so sick. Maybe i'd say I wish my body responded better to me pushing, but unfortunately it's out of my control. There's a line from a book on young adult cancer called "everything changes", which i so identify with. She says, "Life's circumstances don't necessarily comply with will or effort"... I feel like that's been the theme of my life;-) and sometimes I say that to people..

And maybe i'd also validate her in some way, like that's awesome how youre able to push thru , that it works for you, and you can have periods of normalcy, despite what youre dealing with. Ha, if she's really interested, you can show her one of the dinet brochures on pots, but that may be too much. i snuck it in when emailing my friends when talking in general about things, and not acting like it was directed towards them in particular. i liked how in the brochure it mentions POTs is sometimes similar to living w/congestive heart failure. that sometimes makes people think, when they see that in print. my grandma has heart failure, and when i talk to her, our conversations are very similar at times, in fact sometimes she's able to do alot more than me;-) I mention that sometimes... And sometimes people jsut dont get it, unless they experience it. they think it's the same, that they push, why cant you, but it's not. So sometimes, i know with certain people, i'm just never gonna get anywhere and I just have to try to accept it.

[futurehope]

I haven't read all of the replies, but thought I'd chime in.

"Taking care of yourself", and discussing "taking care of yourself", are two different subjects. This is how I handle encounters with others who do not "get it".

I do for myself what needs to be done to help me live my life to the fullest. Most times, people do not question or care what I am doing.

If someone asks me "what are you doing that for?", I respond in as few words as possible. I give no lengthy explanation of my symptoms or illness. I might say, "it helps me enjoy the moment" "It helps me participate for a longer period of time". I'm matter of fact and without self-pity.

Usually, I do not discuss my medical condition unless it is for safety reasons or necessity. Example: I had my feet up resting on a chair in a doctor's office, and the receptionist chided me for doing so. I responded, "I have a medical condition. If I don't do this, I might pass out." That was all it took to answer her.

My husband and grown daughter tend to get embarrassed when I use a motorized scooter in a store since I look so healthy. I ignore them, and use it anyway. It turned out that my 4 yo granddaughter enjoyed riding with me, and it became a fun time for us both. I try to not engage in lengthy discussions and defenses because it is a waste of time, and most people are not that interested.

Remember, you are in charge of taking care of your needs. Other people cannot fully understand. Don't expect them to. They are not you.

[Maxine]

I think eveyone has their own pace, and what is limiting to you may not be for her. POTS is very different in the type of weakness and fatigue that presents. When we don't have any blood where it belongs----near our heart and brain becuase it's pooling in our arms and legs, it's like walking around with a no blood for your heart to pump. It's just not possible. We simply can't push the way some people do.

My brother in law had chemo one day for his non hodgekins lymphoma, and I took him to his treatment. He had to vist a social worker after, and we had to walk through a long walkway between buildings in 95 degree heat. One I walked about 10 fett, I told him to go ahead, I can't move well in the heat, and can only last about 5 minutes before I feel like collapsing.

He has just had chemo, and was walking fast. He seemed fine. I'm sure he wasn't great, but I felt like a pile of broken glass. All my battery juice left me. I was in so much pain I felt like it was an effort to breathe.

My brother Joe was in his last two months of his life with terminal colan cancer that spread to his liver, and he was laying out on his driveway under a car he was fixing for his son who would soon be driving. I'm looking at it as I type this out my front window while he mows our grass. A 1992 honda accord. My brother got the news brake on, and collapsed soon after and had to go into the hospital. He would have his chemo treatments during the three years since he had the surgery, and amazed me on how active he remained, while I would lay aroud puzzled at his ability to stay active. Since I had my last flexation extension MRI and CT scan my symptoms have really gotten bad, and I'm more limited then I was. I have not used a wheel chair yet, but I doubt I could go to the zoo, or a festival without some kind of assistance now.

Some people run themselves into the ground, and some choose to take things slower so they can take in the joy of living life with some QUALITY.

God Bless your friend for her strength, It's not often people are able to carry on like she does with a severe illness like she has.

Blessings to both of you.

Maxine :0)

[roxie]

Thanks guys for your input. I know it takes tremendous strength for her to keep going. When I push myself too hard I stop enjoying things.?

It's nice to know I'm not alone in seeing people with other problems do more than we. A month ago my 78 yr old grandfather broke his hip and I have been amazed at how he has recovered when it took me over a month to recover from a stomach bug. The thing is I push super hard...it just doesn't seem that on the outside. I know you guys all get it.

Futurehope- I'm glad you have the courage to ignore peoples comments. I've had POTS since I wad 12 and going through all the teenage self-conciousness was not easy. I'm slowly learningyo ignore people and not feel bad if they don't get my limitations.

?I know some disease work better pushed but ?do I remember correctly that POTS responds better to pacing? At least mine does better when I pace and very gradually increase things

[Troy]

I agree that some people just dont get it, my doctor has said on ocassion that if people with physicaly limiting disabilities and missing limbs can work that I should be able to too but that is just plain WRONG...at least people who are missing limbs are able to still go out in summer and tolerate the heat...I overheat even on the best of days due to my specific situation and different version of POTS. Its just so frustrating trying to explain these limitation to people who can't think beyond their own values.

[Noreen]

my doctor has said on ocassion that if people with physicaly limiting disabilities ...

But you have a physically limiting disability which is not susceptible to normal accomodations which can be made for other disabilities.

Perhaps he thinks you could do it if you had an environmentally controlled space suit and a reclining wheelchair. Personally I can't see getting hired in such a get up.

[pat57]

Erik,

that was such a good point- that pushing makes thing worse. I live by that to such an extent that I actually forgot. Like- it's a given. Also, when people say..........................you should...........

I say "I can't", so far, people seem to understand that.

[ramakentesh]

POTS is as disabling as early stage MS and heart failure. 25% of patients are unable to work in any capacity. Its a serious illness.

Ask them how they would fair with 45% reductions in blood flow to their brain and paradoxical adrenalin surges...

[MomtoGiuliana]

Hmm, I didn't read all the responses, but I am a little uncomfortable with the statement that whether or not we push ourselves is a choice. Maybe for some it is. Yes, at times my POTS has been not so severe that I could "push" through feeling terrible. I know at other times that was really not at all possible. I know for some with POTS the disability is so severe that pushing oneself to manage any semblance of normal activity is simply not possible.

I am lucky enough now to be be mostly well, but I doubt I will ever forget the severe disability I experienced--so severe that no amount of pushing would have amounted to more than walking from my bedroom to my living room sofa.

It is hard for people to understand severe POTS--perhaps even for some of us POTS-ies ourselves!

[Tuesday]

Hmm, I didn't read all the responses, but I am a little uncomfortable with the statement that whether or not we push ourselves is a choice. Maybe for some it is.

Yeah, I agree. There are days when I can choose to push myself, but other days where there is no choice at all - I am simply down for the count no matter what I do!

[babettess]

I've heard that one way to explain what its like to live with PoTs is to tell people to imagine what they would feel like if they donated blood and then spent the next 24 hours without food or water running in 100 degree weather.

I've explained to some people that when I am in a bad PoTS hole that if my house was on fire that I wouldn't be able to get myself and my disabled daughter out. No one was able to understand that as they thought adrenaline would kick in and make it possible. Of course we all know that if your heart rate goes so high that things go black when you try to stand up that there's no way you could escape from a burning house no matter how hard you tried or wanted to........scary but true when I was at my worst.