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Posted

Hey all,

I have been lurking and reading and am amazed at this community. You are so supportive to newbie's and oldies (hmmm maybe I need to think of a new name for us!:P ) alike. I have been in a deep hole and not really able to be on much but I always check and chime in when I can. Just need to write to some people who I know understand. Friday is my 10 year Wedding anniversary. 10 years ago I was dancing up a storm at my wedding to the most wonderful man. It was one of the best days ever ( though hot! Who knew it would be 98 degrees in PA and I had a long sleeve dress and the church had no ac!!!) Anyway I was so happy so looking forward to my life getting my degree, teaching and dancing ballet it all seemed in front of me and 2 months later it all fell away ( literally I fainted on front door step) I guess the hardest thing is that life has gone on for everyone and I feel so sad. My husband Jim is still wonderful and has been great through this but I feel as if I have cheated him. I know he loves me and I know I love him but our life was to be so much more. I have hope that it still will be but 10 years and our marriage was happy for 2 months. I guess this is just a prelude to my November 10 year anniversary were I am sure I will post a doozy of a vent! :-) I guess I am just wishing for the might have beens and hating that this happened. I wanted to be married to him more than anything. We dated for 5 years before we got married and I think back to all the fun and all the trips and even just simply going out and spending a day was just so great and now we have mini dates and drives and small things but always with recovery to follow. I don?t know I have been in such a hole and its been hard with my dad still being so sick and I guess it just a passing of the time. I really try and not focus on the time that has gone because it is to much to take but Friday I really can?t get away from it and I realllllly would like to escape!!! We have loved each other so much and still do and I know I am blessed to have that but I really wish for more. Do you know what I mean? I am thankful that I have him and know we get through this but I am sad.

Just needed to put that out there, no one really can understand except those who have experienced this.

I thank you for just being out there and hearing my cry.

Stacey

There is so much more I want to say but to be honest I am to tired and feel to awful to type any more. ARGH! :rolleyes::huh::(

Posted

Hi, Stacey. I met my husband on the first day of my last semester or college. I was majoring in psychology and had my mind and heart set on a PhD. I was going to be licensed and go into private practice. I walked four miles almost every day and had a supermodel's figure. Jason and I had so much in common as far as values. Neither of us wanted our children to be raised by other people and Jason wanted to be a Mr. Mom. Honestly, that was his mission back then. Go forward eight years. I am a stay at home mom and have been for five years. 50% because of choice and 50% because I am totally disabled. No PHD but I did get my Master's. For the past five years I had a lot of really scary things going on medically so my Master's degree was something I wanted for myself- to prove to myself that I could do it even though I was SO, SO sick. Jason has been our sole financial provider and we have moved several times in pursuit of his career. Our life is nothing at all like we expected it to be.... except for the fact of how much we truly love each other. Boy has our marriage been strained but we have prevailed and we are far stronger than I ever thought possible. I have loved being at home with my babies (they both are school age now) and have found many outlets for my degree even though I don't work professionally. I don't have that supermodel's body anymore. I had a hysterectomy last summer and have a post-menuposal pooch. Because I can't work out like I use to , it is probably here for good. No life did not turn out the way I planned. We have had our seven years of "in sickness and for poorer" and look forward to the days of health and wealth. But, we are so lucky. We are still married and most of our friends have divorced. We absolutely know what committment means. Commitment to each other and the marriage. Based on what you said it sounds like your husband and you have had similiar experiences. Can you honestly say only two months of your marriage were good? Maybe they were ideal (of course, almost every marriage's first two months are surreal- then, reality hits!) If you can say that- I am so sorry. But yes, I do know what it feels like to realize life dealt you a hand you never meant to play. But sometimes the worst cards end up winning the game. Take care- I'm a Florida girl now, too!

Carmen

Posted

Hi Stacey! Happy anniversary! I hope you have a good one! Just remember that whatever life throws you, you will always have the love and caring of your hubby! :huh: Remember, it could be worse and you could have a life-threatening disease and no husband! No matter what it seems like, it could be worse. Happy Anniversary! :rolleyes:

Cheyenne

Posted

:huh: Hi Stacey!

I understand completely how you feel in relation to the cards life has dealt you. My fiancee walked out on me eight weeks following a cardiac arrest and two weeks prior to my wedding day, stating that he could no longer cope with the illness. He left me homeless and heartbroken.

To cut a very long story short and not go into all the medical problems experienced, I managed to regain my independence and purchase a flat of my own. Of course paying a mortgage on your own is very difficult and means I work myself into the ground literally...having had three cardiac arrests but hey I'm still here to tell the tale! :rolleyes:

I eventually found love in another relationship a couple of years down the line but in March of this year I found myself to be unexpectedly pregnant due to poor advice in relation to my birth control and a new medication I had commenced. I was so happy but so worried at the same time because of the medication that I am taking and it's know relation with fetal anomalies. At 16 wks pregnant I found out that my baby did indeed have an anomaly which meant she would live no more than a few hrs at most following birth. My consultant advised me to terminate the pregnancy as I was getting progressively worse myself as the pregnancy went on and he felt I was putting my own life in serious danger and predicted a further cardiac arrest by 24wks. My partner took the news very badly and once again was abandoned being told I was a failure.

I was left to make a heart wrenching decision on my own, made even more difficult by the fact that I am a midwife and live to bring life into the world, and also it broke my heart having to deal with babies every day and their rightly overjoyed parents.

Eventually I had to make the hardest decision of my life and go through with a termination, a decision for which I can never truly forgive myself.

4 months down the line and following a POTS/NCS/CFS/Seizure relapse I am now back at work. Although I feel lucky to be able to do this I know I am not ready either physically or emotionally but nobody else is going to pay my mortgage for me!

I suppose what I am trying to say is that I know this is awful but I am so jealous of those of you who have managed to sustain a stable relationship throughout their illness and have the support of a loved one, although I know this in itself takes work, to me this is true love. I just feel I will be alone for ever as no one is going to want me when they understand the true up's and down's of life *** chronic illness.

I'm so sorry to moan and I know all of us here have been through some terrible times but am I the only one who at times longs for their old life back????

Take care all x

Posted

Hi Madwife,

I am sorry for your loses. I think that you are very courageous to continue to work and do everything you do with the difficulties that you have. I really admire you.

Ernie

Posted

Ernie... Thankyou so much for your kindness it means a lot but i am no one special, just trying to survive and provide a service which although hard at times is also very rewarding. x

Posted

Hi there... I have to echo the "for sickness and in health...for richer for poorer" phrase. You can never know when one or both will change roles.

At home, we try to stay focused on the positive. Next weekend is our 13th anniversary, and I've been sick the entire time. We try our best to laugh at everything we can, and each year we have the same resolution: "have more fun".

Try to celebrate the fact that after a decade, you are still together. Despite planning, life finds its own way.

:rolleyes: nina

Posted

Hi,

It is hard not to feel guilty that we may not be giving 100% to our partner, family etc. You have to think that 100% for you may not be what another person can give as 100%. I am sure you are still a loving wife with much to offer and give even if it's not scuba diving, hiking, bungee jumping..lol. Point is, I also feel guilty that I am no longer what my hubby signed up for, but in all the years together he has stuck by me and says I may have some extra baggage but he is in it for the long haul. I also feel my kids get short changed, I have to drag them to the dr.s when I am going through rough spots, can't get to their games go on the trips that they want, but I try to think that the most important thing is to be there emotionally and love them all that you can. I really try to not let my condition be theirs.

Hang in there and celebrate the years together and for 60+ more. Here is to hoping one day we all wake up feeling better than ever!

Posted

Congrats on 10 years :)

My husband and I will be married 9 years in Oct. In all the years we have been together (11 total and we dated some in high school) I guess I have had POTS, but of course just in the past 2 years has gotten worse, and in the past few months before I got meds, I didn't feel like doing anything, was always out of breath.

I thank God everyday for what I do have, and am thankful. It is hard to stay positive, but when I get down, I just look at what I have, in three beautiful children and a great husband.

I know it's hard, but it also could be worse.

And to madwife, I have to admire you for what you do. There is someone out there for you.

Posted

Hi Stacey,

glad to see you again! I think you've come to the right place. We all struggle with this so much, so we know what you're going through. We want to live the life we once had, or we would love to have. The most important thing I learned in life is that it doesn't bring you what you expect from it. It's not that I had big or spectacular expectations but I thought we would just be happy (I know, I'm naive :) ). I just didn't expect something like this to happen. My coccyx had broken and after a year of not being able to sit, I finally had surgery and I just thought that I would come back to life. I already planned to go out with my sister and have a real GREAT evening. And then the POTS hit me. And it didn't change just MY life, it changed ALL of our lives. I felt so very sad about it. But here we are again. And, like Nina and her partner, we're trying to have more fun!

Wishing you the best Stacey!

Corina

Posted

Hi stacy - I also wanted to say HAppy Anniversary!

I dated my husband for 7 years before we got married...we just celebrated our 3rd anniversary.

Although I was ill when we got married, I relate to every single thing you wrote just now. All those things went rhough my mind just a couple months ago on our anniversary.....

My husband is my biggest fan and support, but I just wish that for a while I could be the person I really am. Being sick as held us back on many things.....

But We try and muddle through and we try and rember how sick I used to be compared to now.... BUT I wish I could be better ..all the way...

Anyway, for now I am so thankful to have him in my life..... I dont think I oculd have a more supportive, kind husband......

I hope you enjoyed your anniversary no matter what......

Take Care

Posted

I just wanted to say Happy anniversary. You definitely are not alone in these feelings. I think it takes a special patient man to be supportative through an illness, and it sounds like you've got a great one. Alot of people on this board seem to have very supportative husband (including me) I think that's awesome. I couldn't cope with out my husband and he gives me hope and makes me feel loved everyday. But I too feel there should be more. We are 28 and there is so much we should be doing. We've been married for almost 7 yrs and I 've only been sick for 1. I know he misses the way things used to be. I know he misses my energy and our old active life. And it hurts me that I can't be the mother and wife that he married.

I'm trying to hold on to the hope that someday this will pass.

When I get down or my husband gets fustrated we sit down and talk about all the positive things that have come from this. I know it's hard but it helps.

Dayna

Posted

Thanks all.

I miswrote a bit when I said that we were happy for only 2 months. Amazingly we are still happy, I think I meant we were innocently happy and no thoughts of anything like this happeneing. We were "traditionally" married happy. Does that make sense. In actuality we are happier than many marriages I know. I was just laying down to rest and it hit me again 10 years. God that is a long time and I know I am lucky to have him. I just wanted so much more for us. I keep telling myself that we are lucky to still be in love and still be happy but you know what I don't feel so lucky to be sick and to have it not only stop my life but his as well. He is having a bit of a hard time with that too and it is hard to hear him say that. The ohter day he was talking about how his mom had given him some stuff that was his grandmothers and he said it made him sad because who are we going to give it to. He has to say what he is feeling too I know but oh I don't know. I just want a different life, a non sick life, were our days are spent discussing what fun trip we are going to take to celebrate our 10 years not when the next doctor appointment is. Hopefully one day I will be able to do more and we will be stronger for this but for now I just want to cry.

Stacey :)

Posted

Stacey, I completely understand you wanting a 'not sick life'--it's part of being human. Hoping for that is so normal. I hope for it too...but I have learned to live with what I have instead of what I want; it keeps me more contented. If things get better then I will just think of it as an unexpected but very welcome gift.

Nina

Guest Julia59
Posted

Stacy----i'm sending you BIG HUGS-------------- :)

I'm sorry that you got sick so early in your marrige, I can understand why you feel sort of ripped off in a sense.

I was fortunate that it was two years into our marriage when I got sick. This was in 1990, but I didn't crash or get diagnosed with POTS until 2000/2001. We still had a fairly normal life and did quite a few things together until the big crash, and then things came to a quick halt.

I hate that fact that we can't do a lot of things we used to do with our friends or together. I look at it this way..........Now we actually have more quality time together. Before we both worked and I was so limited on time. Now I can take things slower, although sometimes I miss the hustle and bustle of the life I had before. Someday I want to go back to work at least part time. I miss working, and I hate sitting around. I'm not a big hobby person-----i'm a people person----people are my hobby :)

One thing that helps us when we feel in the "ripped off" stage is to watch a funny movie, or invite people over for a cook out. My brother Joe is funny, my son is funny---and some times I can be funny. Laughing makes me feel good---it makes me feel whole again.

They say laughter is the best medicine.------------> :):):D

Hang in there....

HUGS,

Julie :0)

Posted

We just celebrated 10 years too and I wouldn't trade places with any of my friends or family. Sounds like you guys are really solid and if you just look around you'll notice that most relationships are not in great shape even if they are free of illness. At least you know your stressors and can work with them and discuss them openly. I definately regret some of the things we don't do but we have found "workarounds" for them. Stay creative and flexible and do what works for the two of you.

Posted

Thanks you guys,

Nina you are so right "be happy with what you have and be content." I have tried to deal with my illness that way and like you said anything extra is a welcome surprise. Than you for reminding me of that and Happy 13 th anniversary!

Julie,

It is funny becuase we got so desperate that we started calling driving to doctors visits quality time . :D:):)

We do have laughter and you are right I think it is the best medicine. And he is such a goof ball that I can't help laughing everyday! ( hope he does not read this!!)

:)

I guess I should just be happy in him and that he loves me still. The might have beens are hard to let go but the right now is okish and the future maybe better. I have all the hope that one day we will dance again.

Thank you all for your support and help it means so much to me.

Stacey

Posted

Stacey,

I totally hear you and understand your feelings. I too am married to a goof ball! :) It does make life fun, but I've faced so much sadness in the losses lately. I can relate to your statements about how we used to talk about more than rehashing the last doctor's visit and preparing for the next and spending our time together going to them! We've been married 21 years and we too are happy- happier than most marriages without illness - and yet, there are so many dreams we had that are passing us by. The things we can do on a "date" are so limited it almost gets boring.

My husband is sweet and stands by me and grieves with me and is so unselfish - you'd think that would make things just fine even with being sick. But being sick is just never fine - it's horrid - but it's what life is right now, and so we make the best of it - laugh all we can and try to enjoy the little things. It's hard.

~Rose

Guest Julia59
Posted

Stacy,

My husband and I still dance! Even with the POTS mess---and spinal issues---- :)

We just ball room dance now to a special song by the Moody Blues----It's an Irish Melody............. Perfect to slow dance to---or a little ball room---but we don't do anything too strenuous..........it just doesn't last as long.. :D

Sometimes on a good day I will dance a short brief dance if I catch some music----I take advantage of every good moment. I have always loved dancing----and I miss that way I used to dance.

Sometimes if I spend a good hour or two sorting things out in my mind----AKA--(feeling sorry for myself) i'll get a new perspective. I know i'm in trouble if I don't snap out of it in a couple of hours. This web site has been a blessings on those days----and with the help of everyone I eventually do get over the blues---It's kind of ironic my favorite band is the "Moody Blues".

It's sad they came to the out door ampa -theatre at the Toledo Zoo---and I could not go, and have never been to one of their concerts----because when they come to Toledo---it's always in the summer and outside (TOO HOT). They started coming here almost every summer after I crashed with my POTS.

Oh well---I still have to count my blessings------- :)

Julie :0)

Posted

stacey,

were you and jim able to celebrate at all for your 10 year? or were you too POTSholey?

i haven't posted yet on this topic b/c i still don't think i have the right words put together...i'm working on it....but for now...

it's so completely understandable to feel sad like you do. anniversaries of any kind are soooooo tough. they are reminders of what the illness has both given us and taken away from us. and while this illness has probably made you and jim stronger, it has also taken from you things that you wanted sooooo badly that your heart breaks. i want so much to accept 'what is' and move on, but sometimes that is so painful. i want to be happy with what i have and not want more. i know i am lucky in so many ways. but, that doesn't make it any easier does it????? i know how much you wanted to be dancing, to be a mom, to be 'more' as a wife, and i know how much that makes your heart ache on a day like this...it's just so normal to grieve our losses. it's always a challenge to find a balance b/w the grief and the hope...

now for the hope part...

i hope that you have many more years together full of the love and laughter that you have been able to maintain through so much adversity. that shows incredible strength in your marriage and your love for each other. it also shows that you love each other for your 'essence'--illness strips us down to our very core and those who stick around and still love us, really and truly love us for who we are. i hope that you will get years together in which you enjoy health and can be together in the ways you so long to be together.

it just amazes me how you two have endured this illness and love each other so much through it all. many marriages would not survive. i know that does not make it any less sad for you. i just know that i have already had so many friends get divorced (and i am only 29!) or who are so unhappy in their marriages.

it's a testament to you and jim as people that you can make this work and love each other despite the unfairness and disappointments that life gives us. unfortunately, there is a lot of suffering in life and what i try to hope for the most, is that i will go through it surrounded by love.

do you feel better having the anniversary over? was the anticipation the harder part? or are you kinda still digesting? it may take a few days i would think.

well, i guess i thought of something to say huh? i just needed to start typing!

okay, i'm gonna try sleeping again. (i'll e you today about your other questions)

later alligator!

many blessings to you and jim and may you have many more years of love and laughter...and may you see health in there too!

emily

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