Can You Relate?

[futurehope]

I'm feeling really alone right now because my husband and mother do not understand how difficult it is for me to do "normal" things. I think I've spoiled them because they see me doing things and I don't walk around telling them every minute how bad I feel.

Case in point, I live in Baltimore. I've been invited to my niece's wedding in NYC. Sounds great, right? Well, for one thing, I need to GET to NYC. No problem there. My husband drives. Right? Wrong. I feel terrible even as a passenger in a car because that involves sitting - even the reclining position does not help. There's something about a car?! Anyway, say I decided to go. Upon arrival I'd be doing pretty dismally. Then, my husband wants to leave the car in Princeton, NJ (at his brother's house) and pick up a bus across the street and take the (I assume, fairly lengthy) ride into Manhattan. That would definitely do me in. Then when we got there, we'd need a cab, go to a hotel, attend the wedding, etc, etc, I'm reeling even THINKING about it. Can anyone here relate to what I'm saying? Or am I the only one so debilitated by this problem? Maybe I'm not pushing myself hard enough? Should I go anyway even though I would feel so bad that I couldn't even explain it in words? What do you think? Maybe I just can't stand feeling badly or being in too much pain, or pretending I'm fine when I feel like croaking. What do you think?

[Ernie]

Hi,

I would travel in the reclining position and I would leave a day earlier and once I got there I would rest the whole day. Then I would insist to take the car up to the front door of the wedding place. It might cost more money but at least you will have energy left.

Ernie

[DancingLight]

futurehope!!!

i hear you! just thinking about all of the logistics of an event like that sends me reeling too. it is hard too when you don't feel "safe" with the people who will be with you...meaning, they don't quite "get" what your needs are.

i am at the age of weddings and babies...and have missed all of my close friends' weddings...and it breaks my heart. but they completely understand. they live all over the country and i haven't been well enough to travel to visit anyone since college graduation six years ago.

that being said, i know i made the right decisions in not going or trying...but it is so hard. my grandmother is going to be ninety and i keep thinking i should bust my butt no matter the cost to go and see her, but i just don't know...

sorry...i got off subject...it's just that i really hear your pain and frustration...

and you are really beating yourself up...i just wanted to say no, you are not the only one that debiliated by this. no, it is not b/c you aren't trying hard enough. no, you are not alone. and no, you are not the only one whose family sometimes doesn't quite get it! i could not make a trip like that right now. just the thought of the bus or that long of a day or any of it! i am pretty much homebound and i know that there are many others that way...and it isn't b/c we don't long to do "real" and "normal" things.

obviously...you are the best judge of how important it is that you be at your neice's wedding and if it is worth the costs/benefits. ernie had some good suggestions. keep us posted on how it all goes. i just wanted to send some good thoughts your way and let you know that you are not alone....

emily

[nantynannie]

Hi Future Hope,

I agree, there is something about the car, driver or passenger I am always in pain in the car. The only thing I can suggest is to put your legs up on the dash or on the seat in front of you. A lot of times that helps me. I think the heart does not have to work so hard to get the blood up from the legs.

Ann

[tinksinflight]

Futurehope,

Boy do I know what you are saying...

Oh my, can I relate...In the past week we have had 3 family reunions...Not only did I feel like total crap ...But I was expected to bring a covered dish to each event and wear a smile ..These were all for my husbands side of the family...Just to add as I vent a little...excuse please... They see me and think that I am normal and that I can function on all levels....How wrong they are..I was dying...I had several symptoms coming and going through out the entire event each time we went,,,I had tried to prepare myself by loading up on water and salt....I tried to get a good nights sleep and well, that never happens...And I tried to use the klonopin to mask many of my symptoms,that just made every one there more tolerable..the noise and stuff..I must say I was totally over stimulated...But now that I am home and all is done..I am kind of proud of myself for going and pushing myself through it all..I am no doubt exhausted...And ready to hit the floor...

I hope that your husband and you can try to work something out that better meets your limits...I know that if you could...You will enjoy the fact that you did it...much more after the fact..Does that make any sense? Best of luck to you...

[ethansmom]

I can completely relate to this problem- like Emily, I am at the age of weddings and baby showers all over the place! Luckily, I have managed to make it through every single one without incident by taking a few precautions.

The most important thing, as Ernie said, is to rest the day before. EVen if it means arriving early, it will help more than you can imagine...and prepare to feel under the weather the day afterwards, plan to rest then too. I usually sleep in that morning, laze around all day until it's time to get ready, then I shower and everything just before I go (gives me energy). I drink TONS of fluids all day and don't eat anything that would set my POTS off (i.e. carbs) and of course salt, salt, salt...all the normal stuff, just be more concious of it. Then, when you arrive, try to focus on one objective at a time...first it would be making yourself comfortable in the car, then try to have fun when you get there! I have learned the art of positive thinking,and it allows me to enjoy myself at these wonderful occasions instead of constantly worrying about what might happen next.

It can be tough when the people you travel with (which mostly happens to be the significant other) don't really get it, but I just have to explain to mine each and every time, that I will be more enjoyable to be with if we take a few extra steps to ensure my comfort. Good luck, I'm sure you will do fine!

[morgan617]

i just got back from visiting my family. i had to fly and even tho it was only an hour flight, it was awful. and i was sick the whole time, but you know how you just try to buck up and do stuff? i was never so glad as to get home. i'm glad i went, but am pretty sure at this point it's my last vacation ever. whether driving or flying. it sounds so complicated the way it's going to be done. i guess i would just insist that the car go the whole way and if you get sick, make him take you to the motel or whatever. family just has to deal, period. morgan

[Dawg Tired]

I totally relate! Even a car trip of 40 miles - as a passenger - does me in for a couple days. Having to go through the event itself is a whole separate trauma. I would look at it in the light of " they have to accept this sometime" and put my foot down.

[geneva]

futurehope, NO you are not the only one! I really wish I understood what it is about the car. Like you, whether passenger or driver, any distance 30 or more miles will make me symptomatic. I have found that if we stop every 45-60 minutes, get out and wall around (find someplace with A/C in the heat) that it gives my ANS a break and I do much better. Thankfully my husband enjoys this stop and start approach. I am always worse the day AFTER so I agree with arriving a day earlier and resting the entire day.

This may only be me but we avoid back roads where the roads may not be as well maintained and the ride is bumpy. On these roads I feel like the pressure in my head will cause it to explode.

If you are not up for the trip, give yourself permission to not go and not feel guilty. I think we put more pressure on ourselves to do these "extra" events and we should be just as willing to let ourselves off the hook as we want others to be. Good luck to you and know that what you describe is very common for many of us and we all have to find the best way to cope when these invitations arrive.

[Guest GayleP]

Future Hope,

You are not alone with this subject. I agree with the last post, give yourself permission not to go and try not to feel guily if the trip will be too much for you. Although I also know easier said than done re: the guilt part. Or, if you go try to make it as easy on yourself as possible.

I missed a cousin's wedding a few years ago becasue I just couldn't travel out of state and go to the wedding without getting sick. I didn't want to travel all that way and end up not leaving the hotel room.

I know there were a lot of hurt feelings at the time involving my decision. I don't think my aunt, mother or cousin fully understood why I chose not to attend. But for the first time ever I decided to make a choice based on what I needed for myself and my health instead of trying to please everyone else.

And I know my mother got over it and I think now gets why I didn't go. Not sure if my cousin or aunt do but I if I had to do it again I'd still choose not to go.

Good luck,

GayleP

[DawnA]

You should show your husband these posts. It will help him to be more understanding. People who do not have this awful illness just do not understand. It is not there fault, but it can be so frustrating. I went on trip with my family and my husband just could not understand why I felt so lousey when all I did was sleep in the car. I am going to have him read this.

Best wishes,

Dawn

[Roy]

I can understand what you are going through. Healthy people have no clue how we feel and what we go through on a daily bases. People see you doing activities and assume your feeling well or not sick at all. Most doctors don't understand this so I don't even try to bother to explain it to anyone else anymore.

About a month after moving in with my roommate he told me he thought I was faking the whole thing becuase I could I could get out and do things. But after a month of living with me and seeing all the trouble I go through he finally realized how bad off I am. He and my other roommates still forget how sick I am though. They always try talking me into going to out to dinner, the movies or worst of all clubbing. lol! That last one just proves how little they understand.

In the last two months I have missed my brothers highschool graduation and a cousins wedding.

I also have problems driving. I get worn out from going to my daily chiropractic visits. It is about a half hour each way and I am totally exhausted by the time I get home. If I am a passenger I have to stop about ever 2 hours to rest or I'm a total zombie by the time I reach my destination.

As I figured out over the years you just have to learn how to say NO as the slogan goes and be firm about it. If I give into peoples baggering about doing things they will keep doing so in the future.

[blackwolf]

BOY, Do I know what you mean. Even a ride across town can make me feel sick. A ride to the in-laws is so hard(70 miles). We leave early and I just sit for a while before the rest of the family gets there. My father-in-law even has the gaul to complain about how little I do. Funny though, my sister-in-law just tells him to shut up. I love her to death and she has been the most understanding of all of the in-laws. Just remember, NO ONE knows how you feel but you, it is your decision and you are the one who has to suffer thru the event.

Good Luck, Blackwolf

[EarthMother]

Good timing for me FH. I've been beating myself up all week because I am on "vacation". And ofcourse we are staying home, because I just don't feel up to traveling.

I also have a wedding invite, and mine is only an hour away but the thought of the trek and day's activities makes me feel weak in the knees.

Even a 30 minute trip to Toys R Us this week (to buy presents for my little one's birthday) took me three attempts, and this was WITH my husband driving.

I know part of it is my POTS and part of it is anticipatory anxiety that I'll have a dyautonomia problem and be "stuck" somewhere. Ick.

It's hard not to hate this. It's really hard not to hate ourselves for not being able to do "simple" things.

My heart goes out to you. Gosh I better go check my spice cabinet because it looks like I'm all out of sage advice for the day. I'm starting to even depress myself ;-)

Good thoughts.

EM

[futurehope]

EM, I've come up with an idea for riding in a car for more than 30 minutes that I'll have to try out. The trip all the way to the hotel (forget the bus, I'll NEVER do that) could be about 4 hours. Anyway, my new idea is I bought two cheap regular sleeping pillows and I'm going to put one of them UNDER me in the car to raise up my hips. The other will go behind my head, and my legs will be up on the dash. I will recline the seat until I'm confortable. Since the pillows are cheap and new, they are fairly fluffy. In this position, I seem to be more in the position that I tend to stay in at home. The normal car seat keeps my hips too far below my heart to be any good, so I'll be checking out my new idea to see if I stay somewhat okay. I'll let you know. I will have to go a fairly lengthy trip (over 25 miles) to try it out for real.

You cannot believe what I've putting myself through over this. I'm supposed to let the bride know how many are coming by Sept 1st. Of course, most of my small family is going so I'd remain home alone if I stayed home. I think I change my mind about going to this wedding about 10 times/day. And you would think I would be happy and excited. Instead, I'm stressing!

[MightyMouse]

Hey there...just a logistical bit of info since I live close to Princeton. It's about 1 hour from Princeton to NYC by car if you don't have any traffic. It's much faster to take the train than the bus--no traffic, no lights, fewer stops. Cost is about the same. I used to leave my car at the Princeton Junction train station and ride into NYC to see my neuro (the one who originally diagnosed me). If it's not too crowded, you can sprawl out across 2 seats and lie down.

What about going up a day ahead of time and staying over night so you can rest up before the actual wedding? I live only a half hour from Philly, but sometimes when we have events in town, we'll try to get a room on Priceline. We've been able to get 4 stars for 60$ (before tax)... doesn't always work out, but leaves me with a place to rest before and after whatever we need to do...and a place to go crash nearby if I need to. We're doing this next weekend for a birthday we need to go to in Philly and the hotel we got turns out to be just 2 blocks from where the party will be.

I do understand how tough it is to make your decision. You may recall that my sister had an outdoor wedding in June. It wasn't until the day before that I found out I was IN THE WEDDING. It was a humid and warm day, and I held out until almost the end of the 15 minute ceremony, but then had to sit...then make my way indoors ot recoup for a half hour. My sister wasn't very understanding.

Nina

[futurehope]

Nina, I like some of your ideas. The wedding is at 11:30AM, so obviously, I would be going on the train all dressed up. Where does the "Princeton Junction" train let you off? Is it the Port Authority terminal or Grand Central or what? I would have to get from the terminal to the wedding on 23rd street. I'm thinking maybe I could find a cheaper hotel just across the Hudson river from Manhattan (the hotels my niece suggested are $250/night - too much) and drive in that morning for the wedding. I need to check if there's parking at the wedding place? Of course, at this moment, I still have to do my "experiment" to see if I can withstand the 3 1/2 hour car trip north from Baltimore. If not, I stay home.

[MightyMouse]

Busses let you off at Port Authority. Trains end at Penn Station, NY (not to be confused with Penn Station, NEWARK, which is before you get to NY).

You can go to NJ transit's website, http://www.njtransit.com and look at schedule for both busses and trains. You'd be taking the NE Corridor line from any of the following stations: Princeton Junction, Hamilton (best parking situation), or Trenton. Trenton and PJ both have very limited parking--so if you're going a day early, you'll be fighting with the commuters for a spot.

Off peak, round trip for an adult is 14.75 if you buy at the station or from the vending machines. If you buy on the train, you pay a surcharge of 5.00$ per ticket.

NJ is going to be a bit cheaper for a room--but not cheap. When I used to stay up there for work, it was usually about 170 to 200 a night. If you're going to go for it anyway, you might want to give Priceline or a similar site, like Hotwire, a try b/c while you can't specify which hotel, you CAN specify the general area/neighborhood of NYC and the minimum number of stars you'll accept for the price you offer. Worst case, you get a "no" and then go ahead and book yourself where ever you want. Keep in mind though that there are no cancellations w/ Priceline and similar online services--once it's booked, you're locked in.

As for parking if you drive to NYC, even if the location of the wedding doesn't have parking, there's usually a lot within a block or so. If it's hot, have your spouse drop you off and go hunting for the lot solo so you can keep cool. Be prepared to pay more than your train tickets for parking--when I used to go visit my dad in the hospital, it would cost me 30$ to park just for a few hours--and that doesn't include if your car was parked by an attendent and you need to tip. For this reason, when we're going up to NYC, we usually take a train and then a cab--and it's still cheaper than paying for parking

Nina

[futurehope]

Thanks for all the info, Nina. It actually sounds to me that the best bet is to get there a day early and leave the car at the hotel (with their parking service) and take a taxi to the wedding.

[Mary]

Hi Futurehope.

Read your post and feel for you Question... Has your husband read any material on ANS disorders? Or on your specific ones that have been diagnosed?

You have gotten plenty of replies for your trip to the wedding so I wanted to discuss your families knowledge and willingness to gather the information they need to understand your medical condition.

Communication is the key ingredient of a relationship

Common but sad... the person who has the problem is usually the most knowledgable.

My suggestion to you is to ask your husband to read up on ANS disorders and especially yours, to help him understand and cope with your changed lifestyle. You cannot ignore yourself or your symptoms to please others just because they don't get it.

Some ANS disorders can't be visualized and people have a hard time in believing what they can't see

I think having your husband view the Dinet site is a great idea as well as visiting and reading on the POTS place site.

Good luck. Mary

[futurehope]

Mary, You certainly are correct in suggesting my family read up on ANS disorders. My mother is fairly tolerant. She's the one who saw an article about a Dysautonomia/MVP support group in the Northern Va. area and first sent me the reference from the newspaper - which started me on the track to diagnosis. My husband, on the other hand, will not even read this thread which I printed off and put right in front of him. He just has NO interest whatsoever. Won't even go in with me to talk to a doctor. He must have known there was a lot of new info he could learn from reading this thread, so when he saw how much I was pushing him to read a printout from this forum, he relented and said, "okay, we won't take the bus. I'll drive into the city if I have to." Unfortunately for me, my husband's motto is, "Buck up and keep quiet about your problems. I don't want to hear them." He also has a side of him that thinks if I say anything about my physical problems, I am being manipulative. So I TRY to keep quiet since he doesn't want to hear ANYTHING to do with the human body at all. (That's another thread, isn't it?)

I do appreciate everyone here on the forum because at least we can relate to each other. When I try to remember what it was like when I was somewhat "able-bodied", I'm trying to recall my personal reaction to people with hidden ailments? To tell you the truth, I don't think some able-bodied people WANT to be around disabled people, especially ones that complain. It just reminds them that it could happen to them, and they would just as soon avoid you and the whole situation. That's my take on it. You have to have built in a certain compassion on others in order to relate to a sick person. That's why I always felt that nurses (some of them, anyway) were angels. Unfortunately, not everyone has the compassion of nurses.

[EarthMother]

Big hugs to you FH. I know the decision is taxing. You are so amazing to keep on keeping on. I love the ideas of the pillows. This does sound very appealing. My husband wants to take a drive to a coin show this weekend. Probably just under 30 minutes away ... I didn't make it last weekend when we tried. But I'll bolster myself up with pillows and see how far I can make it.

The new chair I bought at work, has a recliner foot pop up. It puts me in that same back tilt that works well for me. It's not always 100% perfect but it gives me the best odds of making it a go.

Good thoughts your way as you still your mind, look deep inside your heart and decide what to do for your RSVP. I am resonating with you.

EM

[ethansmom]

Futurehope-

I just wanted to say that I can completely and totally relate to living with a partner like yours!! I read your post and felt like you were describing our situation to a perfect tee. I have received a lot of wonderful suggestions on this board, which include that we should educate our loved ones by giving them literature to read.

But my problem is- what do you do when they won't read it? The few things I have gotten him to glance over brought nothing but a stream of accusatory questions, he managed to contradict every fact I gave him and twist it around so that I must be making all this up myself- granted, that was a long time ago but if didn't make me want to print out any more literature, EVER again.

I recently found out that his parents didn't even know I lost my job 3 years ago because I was sick, they thought I just decided I didn't want to work- wonder where they got that idea? My parents, however, have tried theur hardest to learn everything they can about ANS disorders and have read everything they could, even attended dr. appts. Two families, two different outlooks on illness apparently.

My boyfriend's family taught him to "suck it up" and don't complain, so that's his philosophy that's been adopted about POTS. I think it has something to do with his mom-she was bedridden for 10 years of his life with devere Chron's disease unti her surgery in 1996, which has givenher a normal life back. Then she got breast cancer about 5 years ago- but nobody ever talks about it!! It's like they pretend itd oesn't exist and that will make it go away- and I think they just taught David to do the same growing up. It really stinks- I think I'm the only one who hasn't called her a hypochondriac because I am fully aware that you cannot create and fabricate Chron's or cancer.

I don't mean to go on about this, but I just totally understand and can relate- going to events like weddings is always more difficult for that reason- I just repeat myself over and over again and try not to complain....ggrr....it feels good to vent though!!

[futurehope]

Well, folks, you have all been so great with all your support and suggestions, but as of right now, I have decided NOT to go. To tell you the truth, it would not be much fun at all, for me, that is. If I am not feeling well, and I'm feeling nauseated (from being vertical too long) and very headachy, I am not having any fun. Now, of course, it will not be much fun here alone with my chihuahua while everyone else is at the wedding, but it is easier to be in my own home and not feel well than to be looking at my wristwatch wondering when it will all end. I've come to accept that I cannot do the things I used to do but I still hold out hope that it could change at any moment. I haven't lost hope for the future (check out my name ). And my philosophy is that I do not want to waste my time wondering why people cannot sympathize or understand my predicament. It serves no purpose. I know what I can or cannot do and I'll go on from there.

This experience of having POTS is molding my character. I'm more understanding and compassionate than I used to be, and more appreciative of everything. I'm actually learning to be a little less self centered as well, since I'm more often called upon to "look over" feeling poorly when I'm trying to be kind to someone else. So, in a strange kind of way, having this ailment has worked some good in my life.

[Michelle Sawicki]

I can relate to what you said about this illness working some good in your life. I'm a much more caring and compassionate person now than I was before I became ill. Sickness taught me to enjoy the little things in life, and to appreciate every waking moment...especially the ones where I feel good. I hate to say it, but for me...it hasn't been all bad. It's made me a better person.

Michelle