Supportive Partners

[ethansmom]

Does anyone else ever feel like your partner doesn't really think that you have a true illness? Even though David is supportive financially and a good father, I feel like I lack his total support with my POTS. After 5 years together, 2 of them with me being sick, I sometimes feel as though he STILL doesn't understand how serious it is, and how much it has affected my life. This really bothers me, but then I wonder if I should expect him to? I mean, how would I ever know what this was like if I wasn't experiencing it?

Just when I think he's gotten used to it, he'll say something like "When you go back to work, we can buy a new car" and I'm left thinking- does he honestly think that I am going to be able to work? We talk about it, but it's almost like he doesn't really hear what I'm saying. Granted, he is 22 years old, maybe I am expecting too much. The farthest I've gotten is him admitting that he has gotten used to bearing the financial burden for now, and he's come to terms with that. I feel like he had big dreams for us, and our future, and that I am holding us back because I can't contribute to our monetary success. But to me, that isn't everything...I don't know, I was just thinking about all this for no reason in particular and wondered how many of you have supportive partners, and how many need a little help Any suggestions?

[calypso]

Jessica,

My husband is extremely supportive but at the same time is very frustrated. He has told me he feels as though there is nothing he can do for me. Listening to me complain irritates him greatly, so I try not to do that, but at the same time he feels pretty bad for me. But despite all of that, you're right -- he doesn't get it. Maybe he is just optimistic that I will get better, so that's why he says things like "when you get better we'll do this or that." I too think I will get somewhat better at some point, but the fact that I am able -- barely -- to hold down two part-time jobs, raise an infant and be sick all at the same time is probably as challenging as I can let things get.

My husband also thinks this is an anxiety-type illness -- he even told me at one point he thought I made myself lose muscle mass and weight because I worried about my illness. That hurt. No rational mind could make you worry yourself to death.

I really am starting to think my husband needs to see a counselor or talk to a friend about this situation. Of course, he isn't that kind of guy; he feels you just need to deal with things on your own. Maybe David would benefit from counseling. Maybe you could write him a letter. I know that I write better than I talk. Tell him what you deal with on a daily basis. (I told my husband I feel like I'm in the movie "Groundhog Day," and every day I stand up, my heart races, I take my beta blocker, I get dizzy, I can't breathe, etc., etc.; the only difference is sometimes the day ends a little differently.)

I wish I had better advice for you. I think you will get better over time, especially because you're young and developed POTS w/ a pregnancy. Stay positive!

Amy

[MomtoGiuliana]

Jessica

Is it something about our culture that makes men especially tend to be in denial about things like illness and uncertainty? My husband is very similar and he is 50! Part of it for my husband, and perhaps for many men in our culture, is he does not like to feel like he is not 100% in control.

It's true I am working part-time and I have hopes that I will eventually move on to full-time work (no plans to now with Giuliana still a toddler). What frustrates me is that my husband acts like I have no challenges to my health. I guess this is partly b/c I don't usually complain--and you are probably the same way--like probably all of us with chronic illness tend to be. He gets aggravated sometimes b/c things are in disarray around the house, I didn't vacuum out the car, etc. On occasions when I do try to explain my symptoms and the fact that they wax and wane, he either seems surprised or somewhat dismissive--like I need to change my attitude and everything will be like it used to be. When I was very sick he was supportive, although I know it was scarey and emotionally draining for him, and an unexpected financial burden, plus he had more responsibility around the house--making meals, etc.

Spouses/partners of people with chronic illness need support, and education, too, that's for sure--just like we do. I think men are so much less likely in our culture to seek out this kind of help though.

I think it would be really great if and when POTS patients get together for conferences or simply get-togethers, that plans are made for spouses/partners/caregivers to be involved too--to meet other patients and spouses/etc. This would help confirm to them that this is a real illness and also perhaps help them to discuss any concerns or questions they have.

I also agree with Calypso about encouraging your partner to write down feelings, questions, fears, ideas. I think writing exercises can help many people to focus and express their thoughts. Sometimes my husband gets very frustrated and he finally writes me an e-mail. That sounds strange and impersonal probably, but I think it is easier for him sometimes than expressing the same thoughts in spoken words.

[purplefocus]

I know my husband is supportive and he knows I have real health issues, but sometimes he just seems to be too relaxed about it. It kinda scares me because what if I am having some real serious stuff going on and am unable to verbalize it and he just passes it off as POTS stuff. He really doesn't expect me to do no more than I feel like doing. I have completely had to quit working so he is taking care of us all financially. I use to make quiet a bit more than him so he is now having to work more hours a day and has fewer off days for us to make it. What do you do? I know it's hard on him so I try not to say much. Hopefully I will get a positive answer from my disabililty issues. I too think he needs to talk with other spouses of people like us, maybe it would make them not feel so alone , like we do for each other.

Paige

[michiganjan]

I don't know how I would get by without my husband. We have been married for 35 years. I have had POTS for the last 25 years. If I can't do something, I just tell him and he does it--like grocery shopping yard work--everything.

I think it is easier on him now since he retired a year ago. He doesn't have to juggle a very demanding job with caring for me and still finding some time to do things he wants. And I have been able to work part time from home and make at least some money. Are you able to work at home part time at something that will bring in some income?

One thing I learned that helped his frustration level and helped my own attitude is to just state facts and not catrastrophize on top of that. For example, "I can't stay awake so I am going to take a nap." Rather than "I don't know why I can never stay awake all day. I am so tired of living like this. I must be getting worse."

I think my husband is so helpful because he has had the time to accept that this is how I am and I am not going to get better. I think a younger man, especially one who is just starting out married life is going to have a very hard time with acceptance. This illness is just not what anyone bargained for. I think that time will help both of you. Another help is having a doctor who has an understanding of your health problems and taking your husband to the appointments.

Good luck,

Michigan Jan

[danelle]

Well, I'll try and keep this as positive as I can I developed POTS after my first pregnancy at the age of 18(I am now 37) but was just diagnosed properly a few months ago. My husband has been through the whole thing with me-from not knowing what was going on, to all the wrong diagnoses, to the bad spells and the "better days". Unfortunately, over the past almost 2 yrs, things have gone steadily down hill for me My POTS has gotten much worse and I am struggling to be able to just get in a few hours a week. Everyone is telling me it is time to file for disability but what will we do for finances in the meantime???? SO I haven't done it yet.

Anyway, back to the spouse thing, my husband has "tried" at times to be supportive but for the most part-has not been. He not only doesn't understand, but doesn't want to understand. Needless to say, our marriage is pretty shaky right now(just celebrated our 20th anniversary). Even though he has been with me from day one of this craziness and knows what I was like before POTS, he still doesn't get it. And even after having two dr's, including Dr Grubb, tell him that this is very debilitating and it makes it hard for us to do just basic daily things, he STILL doesn't get it.

Now that I am not bringing in big bucks anymore, or even enough to make ends meet-literally-he is even more upset. He doesn't want to help come up with any solutions. He says all he can do is go out, work, and pass over the check for me to pay bills with and that he can't do it all on his own-and that is true-we can't make it on his paycheck alone, so I am in a crisis financially and mentally(which does wonders for POTS ) He won't agree to sell a vehicle, sell the boat, or do anything that may help out because he says he will have to give up everything. I told him last night that I HAVE given up everything-including a descent quality of life. I have written him letters, I have sat him down more times than I can count, I have had the drs talk to him, NOTHING works. I hate to say it but I am beginning to have some resentment towards him-which by the way, he told me that he has for me because I can't work full time, I can't do what I used to do, and now he won't be able to quit his stressful job in 2 yrs when our son graduates because of me. He says "what kind of life do you have anyway?" I replied, "I have my children who make me so happy and I can still do little things" but you know, I think he is right. I have burdened my family tooooooo much. I do feel worthless and it hurts.

I even told him that I know what he is going through, as far as living with a chronically ill family member, because I did it with my fathter and it isn't fun but it's even less fun being on this side of the fence.

My husband won't do the counseling thing either, besides we don't have the money anyway. He keeps telling me what a waste of money and time it was to go to Ohio to see Dr Grubb. And he won't get on this site, I've tried.

Wow, where did all that come from?????????Sorry to be so negative Just want to let you know that I can sympathize completely. Sorry for bursting out like this-It's just a bad time.

I hope things get better for you and your fella will eventually understand.

Many hugs your way,

Danelle

[danelle]

I think maybe I was being a little unfair to my husband in the post I just made. Everything I said was true but I feel like I could have said it in a better way. I know it has to be hard on them to have someone always be feeling bad, having to do some extra stuff around the house like cook, clean, clothes, after working all day. It must get old for them too. He does try and help out around the house, just not much of one for emotional support. And I know this finance thing has got him in the same tissy that it has me in. Everyone suffers from this dreaded thing.

I think a convention or get together of POTS pts and families is a great idea!

Amy, that is so funny-I describe POTS as being in a "Groundhog day" movie too!!

Everyone keep your heads up and try and understand where our significant others are coming from too-after all, if we didn't we would be just like them!

Now,,,,,,,,,,,,I need to practice what I preach

Danelle

[MomtoGiuliana]

Danelle

You are going through a tough time. You must be a strong woman. I think my husband would also be like yours if he had to deal with me having severe POTS that long. Of course it affects your relationship--and it certainly sounds like counselling would be a good idea, if he would agree to it.

I know it is hard b/c I do the same thing, but, don't blame yourself for your illness. There is nothing you could have done to prevent it and it sounds like you have done everything you can to try to fix it.

Would he consider talking to other spouses (other men going through the same thing?). I don't know if that would be helpful to him.

I hope you are able to find a way through this together.

[ethansmom]

Thank you all for your responses. It makes me feel so much better to know that others go through this as well. I totally agree that our partners would benefit greatly from some sort of counseling or support- but most of them (mine especially) are so stubborn that it makes things difficult. I mainly feel like some of you do- that I can?t really complain or talk about it when I need to the extent that I would like. We went to a fast food place to eat not too long ago, and I usually drive through because of the line issue- and this particular day I wasn?t feeling too great. David parked and wanted to go in. There was a line a mile long, and he says ?I?ll take the baby and go sit down, can you order for us?? and I?m thinking DON?T YOU GET IT YET??? You?d think by now he would know and remember to be more considerate so I wouldn?t have to remind him AGAIN that I can?t wait in lines. It?s the little things! But then I feel like I can?t start complaining about how lightheaded and faint that I feel, or else I might ruin our pleasant dinner. You know?

I agree that getting older, and time itself, will allow him to come to terms with things a little more. I often think that the fact he?s still with me speaks for itself. I feel that we are happy and we have a good relationship, it just lacks some of the things that we used to have because of what I can?t do anymore.

Danelle- thanks for sharing your story too. It makes me realize that I am not alone in this. I really feel that 15-20 years from now, I could be in your shoes if I was to take a turn for the worse after being stable for a while. I guess sometimes I need to hold off thinking about myself and think about him for a change, maybe try to see things from his perspective. We are moving to Florida next month, where my parents live, and I think it will do wonders for us because we'll have convenient babysitting and lots of help. My mom and dad are thrilled to have us there, and have already told me they have worried about me since day one because of the POTS and they are eager to help out when needed. What a blessing this will be

[Merrill]

Jess, I want to write a longer reply--and I hope to do so later--but for now, just a quick thought. I wonder how that scene at the restaurant played out. Who said what and how was it said? (Did David sit down w/Ethan or did you?)

I find that humor--as much and as often as possible--is the best medicine. When I read that part of your post, I thought of that line from Willie Wonka and the Chocolate Factory: "Scratch that, reverse it!" (Willie says it all the time when he verbally bumbles something...) I somehow pictured you responding to David's suggestion by smiling at him and saying, "Scratch that, reverse it" and then you grabbing Ethan from his arms and going and sitting down! That's the image that came to mind, anyway.

David was probably just pooped too and wanted to sit--not thinking ahead to what the standing would do to you. You--and everyone who responded--are so compassionate...you know too how hard it is to keep someone else's needs at the forefront of consciousness all the time. And something tells me that people with pots tend to be "future problem solvers" because of the jams we know we can get into if we're not careful or if we don't plan ahead. Certainly not everyone is like that (and especially not men!) ...

Gotta run, take care, keep smiling,

m

[danelle]

Jessica,

Congratulations on your move!! How exciting! I know that your parents will be so happy to have you close by. And I am glad that you will have that additional support that you need. I bet they will spoil Ethan rotten! Hopefully that will also give you some relief and less stress knowing that they are there to help with the baby and maybe give you a little more time to relax, etc. Maybe it will help David understand a little more too.

I am glad you posted that today, apparantly my feelings about that were stronger than I thought!!

I wish you much luck with your move, it's sounds like it will be a positive one for you all. Take your time packing, don't get too tired and remember to drink, drink, drink!!

Keep us posted.

Hugs,

Danelle

[Ernie]

We live in a society where productivity and materialism is very important. Few people put value on personal relationship. When we watch TV we see people happy of owning this and this and how miserable we are if we don't have that car or that vacation. This puts a lot of pressure on people to earn money. So both partners work full-time and don't have much time for each other. A few decades ago it was "in" for the woman to stay at home and raise the kids.

Many people are "competing" to keep their job and to appear successful by having expensive belongings. So you need 2 salaries or more. I believe that we can be happy with less possessions and better communication and goodwill.

Our partners have to come to term with having a healthy wife or husband. Then they have to accept that their life will be different than their peers. They also have their limits - emotional and physical. They may be vulnerable to caregiver burnout. Many of them would benefit from councelling but few realise it believing that they are healthy hence OK.

Ernie

[MomtoGiuliana]

Ernie

You are SO right, I think. We Americans have developed a very narrow definition of happiness and success. It's quite sad, and it causes much angst. Look at the rate of divorce nationwide (50% or so of marriages these days). We are also killing the earth with our highly consumptive habits. If everyone on the planet consumed at the level Americans do, we would need 2 to 3 more earths to sustain it. I think our culture encourages us to substitute fulfillment in personal relationships and community connection with things, and it is pretty empty. So many of us are caught up in that spiral and don't stop to think about it. I think chronic illness, like what we have all gone through, is an opportunity, though painful, to reassess our values. In an odd way, we are lucky.

But, I also think that more and more Americans are starting to reassess this mainstream consumer-oriented culture. There is a trend, I have read, of more women staying at home or working part-time, for example, with their young children, and giving up the new SUV, etc.

Anyway, I do think that a spouse or partner of a person with chronic illness also has to go through this process of reassessing the narrow definition of happiness and success.

[ethansmom]

I agree with everyone here. I feel blessed in a way, that POTS has given me an oppurtunity to see what's really important in life. Material things aren't important to me at all- but I credit a lot of that to my parents, who raised me to be earth friendly and not money hungry. David is very driven- which is what attracted me to him in the first place, but it's also his "fatal flaw". He isn't happy unless he has the BEST of everything- and given our situation, we can't always have everything we want- hence the relationship struggle and resentment towards this illness by all parties involved. People don't understand how it impacts everything in our lives, right down to the last detail. So we try to find a happy medium somewhere- but I've honestly never been so incredibly happy in my life as I am right now. I have more than I could ever ask for at 22 years old- and I mean that in every sense, not just possession-wise but I feel truly happy to have such a wonderful family, friends ,and better health than it was 2 years ago- and I can't ask for more than that. I still have rough times, but if this is as good as it gets than I'll take it

Merrill- The restaurant situation ended with David sort of rolling his eyes and mumbling something about me being no fun to do anything with- in a joking sort of way, though. I really need to make that concious effort to be lighter about these things, though- I know I complain a lot despite my overall positive outlook. I knw he thinks I am such a pessimist- which is ironic because I consider myself to be quite the optimist, given the cards I've been dealt. But I like the idea of being humorous- maybe I ought to try it more often!!

[briarrose]

Hey Ernie

Well Said and so true!

[Sue]

I think I have mentioned this before. We finally had to sit down as a family and discuss my illness. We have now decided that it is a "family illness". It took alot for me to understand how my husband and children felt about things when I get sick. I never really took the time to worry about how this affected them but I do now. My husband admitted to me that he was so scared he just didn't know what to say or do for me. My children as well. I have told them what I feel like, the best I can and what I need from them when I am sick. as well as what throws me off when I am not. The biggest thing I have learned from them is when I do feel half way decent to not be afraid anymore to leave the house with them. They have all assured me that if I feel or get sick they will take care of me and get me back home. I think that was the most difficult thing right now for me to do. I have myself all panicky before I even walk out the front door.

We now save every Sunday morning for "family time". We have discussed things as a family that I don't think we would have for not doing this. And having two teenagers I think its so important to keep the communication lines open and for them to know they can discuss anything with us. and I can more opening share my feelings with them about all of this.

I need all of their support, but I also now know they need mine too.

Sue

[KarenLorrel]

Jessica..and to all of you,

Thank you for sharing about the type of support and understanding you get from your husbands. I woke up this morning needing to know I was not alone. I spent last night crying and getting so upset that my entire body seems as if it can not work in harmony today.

I really want to get better, yet as I do, I see my husband as getting resentful. I understand it in my 'head' but my heart is pleading with him to give me time to get better and push new limits to see what I can and cannot do.

I am trying to look forward to a 'tomorrow.' I plan pilates 2 days a week...that is all I do for that day. One day a week I try to go to a piano lesson...even if I couldn't practice that week. I try to stay positive and productive. I look at what I choose to do, as 'my job' trying to get better...he sees it as doing things, then not being able to do something with him WHEN he wants too.

Honestly, when I was almost totally inactive he was much more understanding...or maybe is was quitely resentful. As he gets more visibly and verbally upset with me...it causes a set back in my progress. I have no extended family and my children live in different states...but all very loving. My last child left to attend Duke University's med-school in May. (proud mommy) I didn't realize at the time how much support she was to me..and that made it easier to accept my husband's lack of interest in learning about POTS.

He has always done nice things, cooks, helps clean, no pressure to go to work related events,yet, as I find I am getting better and trying to do more things...he has become less tolerate, wonders why I can take a piano lesson..(which is monumental in my life) and refuse to do things with him. He is a nice person, highly educated...even trainied psychologist...yet a man with a high pressure type job and a chronically ill wife. I think he does not want 'one more problem to solve.' So, he doesn't talk with me about POTS, or problem solve ideas to help me.

He works 7:00am to at least 6:30 pm most days. On Saturdays he does not want to be in the house, or go to a movie but will ask me by evening to drive 40 miles for a cup of coffee...in the convertible. Well, that sounds like fun but by evening I don't have any energy left by evening. I asked him to go earily but he has things to do.

I know 'this to shall pass' but I have never had anyone to talk to about these types of struggles. So, for the first time in my life, I am putting my 'self' out here to say, I value your thoughts, insights, struggles, and support.

Thanks to all of you.

I AM getting better!

I may not be the most active wife in the world but I am motivated to get better. I am not sure I can endure much more of my husband's negative attitude but I also know in my heart that God gives us 'just what we need when we need it,' yet sometimes not a second before:)

Last night , I explained to him how I have helped him through some of his darkest hours, and now I need him to help me until I can get better. He did say he will go to my next appointment with Dr. Grubb. He has gone with me to see a clincial psycholgist who specializes in chronic illness...so we have taken 5 steps forward but 2 back..that's progress!

I know today will be a better day....again, heartfelt thanks for bringing up the topic of husbands and support. I needed to 'talk.'

Lorrell

[morgan617]

i really have to say i have the most supportive hubby on earth. he gets mad if i talk about working. he works 60-70 hours a week and cooks and cleans. he even does laundry. i only let him do stuff if i absolutely can't, but he has never complained. we have no sex life at all, no real life, can't travel, can't even go to movies, but he NEVER complains. and he's as faithful as they come. i'm sure there's a sainthood waiting for him somewhere. hoipe he enjoys it when he gets it. i have one son who's very understanding, because he's not well either, and one who is getting a lot more understanding. so i thank God everyday for my supportive family. my first husband never would have stood for this "malingering" pretend sickness. so glad he's not in the picture anymore. hope things get better for those of you that are struggling. morgan

[purplefocus]

I got my husband to read my post here and he also read several of the post others had typed. We discussed this for awhile. I think it made a difference. He did say he wouldn't go to counseling or anything like that.........I think that is a man thing.......But I really think it made a difference. He came home early from work today to help me prepare for our 13 year old birthday party. This was something he had not originally planned. He told me he was worried if I did too much today that I would not feel like attending the party tonight. Which I am sure some of you feel this way too. Anyway I thought this was a nice suggestion and he is trying to understand about this illness. He is attending doctor appointments with me also.

Paige

[Guest veryblue]

Supportive partners...honestely I don't think they exist..at least not 100% supportive. My fiance thinks he is supportive in his own little world but in my world I dont really see it that way. I am trying to figure out what caused my bizzare behavior and everytime I have a new theroy he rolls his eyes at me. He gets mad and yells "Yesterday you said you have this and today it's something else!" I'm left thinking of course its one thing today and another the next...I get a theory go to a doctor and then he rules that theory out so on I go to the next one! I am not a quitter and I will not except this illness...not in a thousand years...I will never give up on search on what is causing this...I will travel a thousand miles and spend thousands of dollars that I dont have because I will not loose my life overnight...this cant be forever...you dont just wake up and your life is gone one day and will never return without some kind of warning. I want to move back to California because I feel better for some reason there, but now I just got in an apartment here and we wont really be able to get out of the lease for a year without taking in a big hit. I begged him...I cried...I got mad...I did everything I could of to get him to go back before we got in here...but NO...that would be asking too much...I know it's very expensive in Cali but ****** I feel better there...and no its not psychological, its not cuz I'm close to my family...I just feel better and have a lower heart rate there...if he was so supportive then he would have understood that in the first place...I mean I would give up everything I have for him to have his good health...It just ***** that the feeling dosent run both ways. I know I'm not as bad as other people on here...I play softball a few times a week, can work and can go to school...but I feel so beat and freaking scared for my bleak future that I just want to run home to my mommy and daddy and cry my heart out! I am too strong for that though...so I beat out another day in **** trapped in this strange body of mine in the stinking midwest heat! I just wish everynight that this stupid illness goes away cuz the two of us will never ever not in a thousand years make it if I remain this way.

[migraine]

Wow, sounds like we all need some couples "POTS" therapy. Veryblue, you are so very blue, and I'm not really sure how to follow up on your posting. I actually spent a lot of time really reading everyone's postings because this really hit one of my emotional nerves. I wish I could print it off and give it to my husband, but he can't read and stay focused for that long. He has resorted to financial books on CDs to listen to in his car...again that material society.

I posted something a while back about my husband finally coming to an appointment. Things are back to normal now, and because I haven't died or passed out, he still thinks the doctors are full of it and if I would just lose weight everything would be fine.

Labeled a "complainer" I'm often amazed at how many things I don't comlain about. That fast food line thing was a perfect example. My husband doesn't get it either and it would take too long to explain to him that I feel faint waiting in line, that my head starts to hurt, I sweat, and I get very angry with other people and the idiot cashiers that are moving at a snail's pace. This is a normal task for normal people, but it ***** the life out of me for an entire day. But I do it because yes, just that one more complaint would again ruin our lunch and our day. Some stuff I don't even realize like if I spend the morning throwing up and then prepare a massive birthday party in the afternoon because it just has to get done. Usually my Mom will point out that I should have asked for help.

As I have metnioned before, my husband thinks this illness is just one generic title doctors give us when we have a bunch of problems and don't know why. Even during my worst migraines throwing up or in the hospital on bed rest I have never felt a strand of sympathy from him. He would be hurt if he read this, but he lacks in the empathy department. He is so wonderful at everything else, but so lousy at this...or maybe he just doesn't have any more to give. (Yes, blaming myself again.)

I think age really plays a large factor. It seems like most of you who posted who were older had more understanding spouses. The original poster's is 22 and my husband is 33. About a year ago I had a migraine so bad and could not stop throwing up. I wished that someone could simply cut my brain in half to releave the pressure. I was in tears. I tried Imitrex for the first time and had a severe reaction to it. For available support I only had my husband and step-Dad. I chose my step-Dad. I remember being so impressed that he sat in the tiny ER room with me for 8 hours. He stroked my forhead, emptied my little basin, and brought fresh cold towels for my head. I'm not even that close with him. I remember crying even more because I knew my husband would have never done that...and would I have to wait for him to turn 50 to have that kind of love and patience?

And so myself and it seems like many of you are stuck in this rut. I don't have any advice, but I am moved at your comments and know that other people are in my shoes. Sorry, I didn't mean to end up on a negative note, but like I said this posing really struck a nerve and probably one of the single most important conflict issues in my marriage.

[ethansmom]

I am really amazed by the huge number of responses I've received from this posting. I'm very glad that the topic came up, because it looks like we all needed to do a little comparative venting I could literally take lines from each and every one of your posts and apply them to my own life- did you all feel that way too when you were reading these?

I agree wholeheartedly with your post Lorrell- and could sympathize with a lot of it. I especially liked where you said "I know in my heart that God gives us 'just what we need when we need it,' yet sometimes not a second before". Is that not SO true?! I always say that Ethan was just what we needed, because he was given to us at a time when everything else had faltered. I had never been so hopeless, unhappy, sick, depressed, and struggling as I was the day I found out I was pregnant. David and I had been separated, my parents had just lost their parents within months of the pregnancy, and David's grandparents had both passed away. Our family was literally dying in front of our eyes, our relationship was dying, and the baby was the glue that held us together. It made me feel better mentally and physically, which in turn made our relationship grow, and once Ethan arrived there was never a second thought. He is my glimpse of what a miracle really is, because he brought happiness to everyone when we needed it, but not a second before .

Very Blue- Hang in there with your fighting attitude. I am the same way and I have not given up to this day. Just TRY, TRY, TRY to stay positive and focused, and don't lose your way. I hope that your fiance will someday come to terms with this illness, because I KNOW where the bitterness comes from- as I had said, i deal with resentment every day.

Migraine- I agree that age plays a huge role in this. I absolutely know that I am lucky to have David by my side for this long, considering our age. We met when we were 17, and except for one bad week in the midst of the POTS **** I went through, we've been together ever since. I am just happy that he has supported me as much as he has- but always wanting more emotional stuff than I'm going to get out of a guy who isn't 50 yet

All I can hope is that as time goes on, our partners can learn more and more about the nature of this illness, and come to understand somehow, what we've been dealing with. We are the real heroes.

[danelle]

Jess,

This was a great topic to start/ I read the responses daily.

Migraine-like I said in my post, i have been with my husband for 24 yrs(married 20-been together since i was 13, him 15-scary huh) and he still doesn't understand. He is 40. Don't hold your breath on the age thing.

Gotta tell you something on a lighter note- a few days ago after trying to have a talk with my husband for the umteenth time, i went and took a shower. After my shower I was combing my hair and doing the usual stuff. I could feel my legs "filling up" and I looked down and of course they were very mottled (purple) so I said what the heck. I called my husband in the room and said "Hey look at this" He looked at my legs and his mouth dropped(I haven't pointed it out to him before) and he said good grief, and I could see genuine concern in his eyes....Well, I was so disgusted from the conversation earlier that I did something kinda mean in a joking way. I said, "Now watch this" I laid down on the bed and lifted my legs in the air until the color became normal again. He just stood there amazed and worried.. He said "Gosh, it really is hard for you to stand isn't it?" Duh, Hello? This is what I have been trying to tell you for months, years now. Maybe you just had to be here but I think it was somewhat of an eyeopener for him and I had to make a smarta$$ joke out of it. Needless to say, he's been a little nicer since then....

Glad to know I'm not alone but hate it for everyone else too. would write more but I am having brain fog today and it's taken me forever to find the right keys!!

Hugs and support to all,

Danelle

[migraine]

Danelle:

I'm glad your husband's lightbulb finally went on! I wish I had something more physically concrete to show my husband. Most of us have heat issues, but I am usually cold. He's not impressed anymore by me pressing my icy cold hands against his to prove that I AM REALLY COLD! The throwing up and moaning with migraines is also not really impressive to him anymore.

I even spoke to one of my doctors about the lack of spousal support with this disease. He actually sent a letter directly to my husband stating that if I did not slow down and get some naps in once in awhile that eventually I would not have a migraine...I would have a stroke! No response!

We both work and the only real day we are both home together is Sunday. We struggle each week with demanding some alone time. After 9 years I finally worked out a little nap plan. For some reason if I go up to my room to bed, he becomes furious that he is stuck with the kids on is only day off. But...if I sleep on the couch while he watches TV or plays with the kids...it's somehow acceptable. Ahhhh, the games we play.

Oh Danelle...the age thing was my only hope for some empathy. I'm just greatful I have my Mother and Step-Father around for support. I don't know what I would do without them. Last night I felt horrible that I had posted such a horrible description of my spouse.. because he is really a good person and a great Father. I just think this forum allows for some room to vent which is just what most of us need. Thanks Ethansmom for bringing this up so we can get some of this frustration out of our system

[Jackie]

Well I too have read through the posts and it hits a nerve for me too because I have touched base on this issue before I think in some of my ramblings and feel I can understand what some are going through. I thought I was the only one and it was a difficult thing to share at the time.

At my worst, I felt totally abandoned by my husband. He never slowed down at work or school or national guard and when I went to ER all those times he was either working or at school, etc. The couple times he was present (like when I was in the hospital or at a dr. visit, etc.) he just kinda' sat back like an observer and never spoke up on my behalf or said anything for that matter. I know it sounds childish but I definitely feel like I was in my worst state ever, very vulnerable, being treated like a nut and really needed this man to say "hey wait a minute...I know this person and she is really sick...something is wrong...she hasn't always been like this"......well dream on. Yes, I've gone through the resentment at times but I have finally come to terms with it I think and put it behind me because rehearsing what happened in my mind just is painful all over again. I believe he was doing what he felt he had to do (work and push himself as much as he could because financially we were falling apart when I was sick). But for me, I guess out of selfishness it felt like I wasn't important and work and school was an excuse and escape for him. Sometimes he would come home and carry on and say horrible things like "how many times are you going to go to the hospital before you realize what you are feeling is not happening" (i.e. palpitations, etc., because the EKG was always normal) well, if sinus arrhythmia is normal and paroxysmal atrial tachycardia is normal (which I know they consider these rhythms benign they feel horrible when they are happening). I touched base on it a little at my appointment with Dr. Grubb when I told him my husband does say he believes there is a physical component to it as well as mental (I think he thinks it is more anxiety than anything though) Dr. Grubb said well, wait until he gets sick.

Overall, I have a wonderful husband. He is a hard worker and faithful and my best friend but I'm sorry I will never forget though I have forgiven him but I do feel he was not there for me when I needed him the most. Sure there were times he held me and comforted me but a lot times he was just plain mean and angry that I wasn't just snapping out of it. Those months I was at my worst last year were definitely just like the movie Groundhound Day...I've used the same analogy...but you know what finally I've made each day a little different and with medication I've been able to completely break that repeat cycle and that everyday is the same and I can't function nightmare is finally over. Do I struggle still? yes. Am I 100%...I think no but I'm definitely better. So now the expectations are high because most days I do pretty well considering so when I have a bad day or a few for that matter and don't work as much or something he still might make a comment like he did one day when I felt bad and just couldnt think straight and was upset that I didn't get my typing done that day and he said "at one point did you not know that you had to work"....that one hurt too.

Anyway, I just wanted to say that I'm 37 and my husband is 38 and we have been together 6 years and married for 2 so I thought that was why maybe it has been harder for him to understand because he didn't know me when I was in my 20s and going full tilt. I think I've been more symptomatic since my late 20s just before we met and so he has only seen me with less energy, always not feeling well in some way, and not having all the energy to do things like most other women my age. Who knows...I know I wish things were different and that I could be different but this is my reality and I am learning to deal with it and live as best I can in spite of it. On one side like I said I do have some resentment for his lack of understanding at times but at other times I wonder how I would have held up in his shoes seeing him fall apart and every doctor saying "they don't know", "it's anxiety", etc. I was kinda' a basket case at the time because of being so scared and having nobody to understand or help and all the medication side effects, etc. He went through **** too just in a different way. All I can say is we weathered the worst of it I suppose or hope anyway, he does believe POTS is real, he knows people in my family who have symptoms too, and we are still together. He is not supportive of me being on medication like Xanax which used to make me always panic more too because meds are my biggest fear but I think over time he is coming to terms with it as much as I have had to because he sees that it does help. I feel I am getting better a little each day and hope to be medication free someday but if not believe me as I write this....I will do anything, go anywhere, and practically take anything if I must to never go through what I went through last year. I am afraid of meds but I'm more afraid of being too sick to stand up and live.

So, kudos honestly to those with fantastically understanding husbands and understanding to those who have less than understanding husbands. I think I fall somewhere in the middle and mostly at the less understanding end during the worst part. They say men have their health problems later in life most of the time so we will see how they fair huh? Not that I wish anything on anybody at all but honestly men are bigger babies than women generally so I wonder how they will hold up when their genetics finally reveal what is lurking in their bodies. Lucky for them they will have us and having gone through what we have endured we will know how to be there for them in the way they need hopefully and finally the last little light of understanding will flash on!