Pure venting

[StandUpSitDown]

normally I'm a pretty sunny-dispositioned person. But today, I just have to get something off my chest.

I think you all are wonderful. I've learned so much from you, and I wish you all the joy and peace we all deserve.

But I hate having to be here. I hate that my world is now focused on heart rate, on eating tiny meals, on devoting so much of my brain on the simple task of staying alive. I carry a frigging heart-rate watch with me that makes me look like a geek.

I hate the fact that in all of this the nurses, bless them, look with frustration at arms that have had too many IV-needles in them already. I hate knowing the detailed operations of ER's across the local region. I hate the fact that I have such an analytical mind, and can piece thing together and learn so fast, bluntly faster than many of the doctors, because my mind is so focused on this, and they have many patients. I hate the fact that I have taught myself about all of these drugs, and can even begin to predict what other studies will say that I haven't read yet. I hate this because it means I can't lull myself into complacency as to where this is going.

I hate the fact I have something that mainly affects the other gender, because when I go to doctors or places I have more than once gotten "POTS? Isn't that a woman's disease?"

I have a wife who will do anything to take care of me. I hate that she has to. A husband is supposed to take care of his wife - not the other way around. I don't drive - I put the seat down in the car, and she does. When I am having a bad day and need to go to an ER, she pushes the wheelchair. She brings food to me. She is the only thing I love in this. And I hate that she has to do this.

And in all ways, she shows she is still my wife, and I am her husband.

Yet so much of what she has to do makes me feel like her child.

And I hate that this is my lot in life. And my wife - her loyalty to me shines through so strongly that she has made this her lot in life.

And I hate the fact that it hits her. I hate that more than anything it is doing to me.

[MomtoGiuliana]

Vent as much as you need to.

I hope you find treatments that improve your symptoms for you. It can take time. Please remember that many people do improve over time--but it can be years of recovery, and relapses are part of the condition for many people too.

I also realized how very special my family is, including my husband, when I was terribly ill. And I also felt so terrible for the burden I placed on him. So, I understand where you are coming from. Still, please do not blame yourself. You are not responsible for being ill. I think this is especially hard to accept with this condition, since under-educated doctors can lead us to believe this is all somehow imagined or brought on by anxiety or stress.

I believe that a husband and a wife are "supposed to" take care of *each other*--whatever life brings them. A hard part of being very sick is "letting go"--of our previous vision of ourselves, our relationships, our world. It is really a major transformation you have to go through and it can be a lonely journey. It can also be a learning experience, though, as you see yourself and the world in new ways. We learn to be more flexible, patient, attentive than we were and than those who have never gone through this kind of thing.

Take care and continue to let us know how you are doing and feeling.

Katherine

[momofpreciousboy]

I know. I felt exactly as you do. It was the same way for me, only I am female. And a mom. Things got better for me fairly quickly after I got the right bb--we were all at our breaking point. The stress this places on your family is tremendous. My child is totally different since I have been better. you will get better--you have to think that. It is hard, hard, hard. Jennifer, TX

[Dizzy Dame]

Sorry to hear you're in such a rut. I know I've been exactly where you are now, and still find myself in that dark place at times.

Being sick is horrible. It's never easy and never fun. Forgive me for trying to impart advice, but this is a quote from the Dalai Lama that has become my mantra through my illness:

"If there is a way to overcome the suffering, then there is no need to worry; if there is no way to overcome the suffering, then there is no use in worrying. "

I hope this helps you, or if not, perhaps there is a different philosophy that you can adopt to make things easier.

[faithinspires]

I share in your frustration! God bless your wife and those of you who have a supportive family! I struggle so hard to accept this disability...I feel much of what you feel. As for my husband, he left when my oldest daughter and I got sick. There were of course other problems that lead to the divorce including this...but I have had to endure comments from him, such as, I think about us getting back together...but I don't want to be with someone who is disabled and can't work. This adds insult to injury and makes my disability harder for me to accept. We were married with 3 children for 13 years, together for 20. I worked outside the home for the first few years, then we decided I shoud stay home with the kids. During those years I did everything from babysitting, to crafting, to selling antiques on Ebay, and working on occasion at my mom's store to supplement our income. I am frustrated that the way this illness affects my life, has affected my children, 9 & 12. Bless their hearts, they have been my only support. They have been wonderfully supportive, encouring, and understanding. They help with the things I can no longer lift. They have had to adjust to a different lifestyle to accomodate my illness. I make sure to meet all of their needs in each and every way, as always. But I hate it that they have to watch me struggle. I hate it when we can't do things we want because I am ill. We have come up with alternate things to do, but it just breaks my heart that our life isn't what it used to be before I got sick. I hate that I used to be a super high energy person, always on the go, never sitting down, going above and beyond with everything. And now I am sick and tired. I hate that at a time when my husband left and I needed to become the support for the family, and planned to that I became disabled instead. I still refuse to accept this and pray for my condition to improve enough for me to work and for me to improve our circumstances. My mind still sees myself as high energy, but my body doesn't want to cooperate. Though our stories are slightly different the frustration of becoming sick and how it affects us and those close to us is hard to accept. Spouses should care for one another if one becomes sick...in sickness and health. I for one would definately have cared for mine, or gone to work if he couldn't work. So although I know your frustration, be grateful that you are loved...be grateful you are blessed with a loving wife. I know that I am grateful to my children, but frustrated that this is what our life has become. I too remind myself that I did not ask for this, and it is beyond my control. My comfort comes in knowing that I do meet all of my children's needs sick or not. My comfort comes in that over this past year, there have been several times that complete strangers have been kind enough to care, and help my family. My comfort comes in that I had a dozen biopsies from 3 different surgeries in the past year for different health problems and they all came back benign. My comfort comes in that I have has some near death experiences in the past year and survived My comfort comes in looking for, finding, and seeing the ways in which I am blessed despite this illness. My comfort comes in knowing that I have a better perspective now on what is truly important in life and what is not. It's hard I know...there are many out there with worse things wrong...facing death...I am grateful for this perspective. But despite this perspective still struggling with acceptance of this illness and my circumstances. I am tired of the trial and error and being a guinea pig...but still I am determined to do all I can, try all I can...so that I may improve enough to improve my level of functioning. The way you feel is so normal.

More perspective, My daughter who is 18, and suffers from this condition went from being an honor student, playing several instrument, band choir, symphony, gymnastics, soccer...attending school to being bedridden for a time with many hospital stays. She is now still homeschooling, still undergoing treatment, and beginning to show improvement. She returned to playing soccer this past summer, to working part-time, and to dancing with a dance academy. She too, struggled with how much the illness changed her life. She still struggles with the frustration of it as we do. She now celebrates each improvement and each additional thing she becomes able to do as a victory. Well I have rambled enough about the frustration of this disease. Take care and know that you are not alone in how you feel!

[Radha]

dizzy dame, i wanted to say i really liked your quote, thats true, but what i struggle with is striking that balance between acceptance, and trying to be satisfied and happy as you can be with the life you have now,and still holding onto the dreams and hopes that you will be back to active independent person you once were, and not getting too wrapped up and obsessed with those wishes, so that you dont lose it and get totally depressed!! sorry i'm being confusing!! and beng sick definately affects your loved ones, and i know i deal with guilt and feeling like a nag on a regular basis, even though i have such understanding parents, but we have to remember its not our fault,

radha

[dizzygirl]

faithinspires... reading your post truly put tears in my eyes...you have lost alot.. but yet on the other hands you have you beautiful children..

standupsit down...WOW..you never really here from men who have dysautonomia.. I am sorry that you are sick.. but you have been blessed with a wonderful wife who is standing beside you.. no questions asked.. she is there to help you and love.. because she wants to.. and I'm sure that if the roles were reversed.. that you would do the same for her no questions asked..

please feel free to vent here anytime you want.. we are not here to judge.. but to support encourage and understand in a way that only WE that are afflicted with POTS can understand..

god bless you

[JaneEyre9]

I understand a lot of these feelings of frustration. It is so hard to be focused on illness (taking precautions, talking about symptoms, going to doctors, etc.) and to feel like a burden to those around us, especially when we want to be *doing* the "taking care of." I have felt the same way. We are lucky to have people who love us though...and i have to say, if someone i loved was sick, i would feel a great deal of gratification in being able to show my love by nurturing them. In a lot of ways, this trial for all of us in an opportunity to see who our greatest allies are, and it is a true test of those who are loyal...making appreciation and love grow deeper.

Kristen

[mom4cem]

Please don't feel sorry about venting. Remember that your wife loves you and is there because she wants to be. Keep saying that you will not be like this forever. One day you will find a comfortable level to be at. Hang in there, better days are ahead

[lizzy]

I understand the HATE you wrote about ..all too well.

I stayed in that mood for too many days in arow one time.cause must days I can have a good day to get back into myself mode.:after my POTYS day" .I found new plaquek on the wall in the bed room.IT made me smile maybe it well help you smile too?

I KNOW THAT GOD WON `T GIVE ME ANYTHING I CAN`T HANDLE,

I JUST WITH HE DIDN`T TRUST ME SO MUCH.

- Mother Teresa

I do not know if releige stuff can be post or not?But I do know we wake now to him reading this outloud FOR both of us to remeber .LIFE IS good,TODAY we can have.

[pamela]

From a sick wifes perspective..

I am early thirties and have a small child. My first chils was born to me in my early 20's when I was healthy. Even then it was hard. I have been sick since 2003. I developed a Pulmonary Embolism while my husband was in Iraq. They sent him home to be with me and help me recover. He was very afraid that he was going to lose me. He did not baby me. Unless I needed it. He let me try to do the things that I use to. There are lots of no-no's when you are on a large dose of blood thinners and have lung damage from clots. Anyway, he was there for me and never complained. He wanted me better so that he could go back to Iraq yet he wanted to be with me to insure that I would be o.k. Humorously while recovering, we found ourselves pregnant. Added precautions were taken to keep both me and the baby well. He wanted to stay the entire pregnancy but I sent him back.

I was given about 4mos grace periode from the time Angelina was born before I began passing out. More ER visits, Ambulance runs, tests etc..He was patient and always ready to go to the hospital. Sure it was hard for him to go to work at 0530 after just getting home from the hosp. but he did.

After all of this we are still together. He loves me and I love him. He has always let me take the lead when it comes to having his help or not. But when I could not make decisions regaurding my health care because I was out of it, he stood by my wishes and stayed by my side. It is hard to see him hurt for me and want to do so much more. Then I want to do more because I am the wife, mother and the nurturer.

See , male and female, husband and wife,whatever..In a relationship each person has a role but they can alternate and switch. Remember that she cares for you. I am sure that she would rather you be healthy but her love shows and gives her the compassion to help you. The best thing for you to remember is to say "thank you" and" I love you" to her everyday. If she offers to help don't refuse because that would hurt her feelings. Above all show her your appreciation and smile. Be there for eachother, sooner or later things have to change. Hang in there.

Pam

[StaceyYount]

Hey,

I so so understand all that you are saying. I got ill 2 months after my wedding and my husband has been so wonderful but it is so hard not to be what you wanted for them. It has now been 10 years and we love each still and in spite of this. Thank goodness for your wife as I thank goodness for my husband. My father is also ill and he says all the time a husband is suppose to take care of his wife but I tell him and you that if it was the other way and she was ill you would be there and that is a wonderful thing to have and to give. That is not making sense but I hope you get what i am trying to say. In sickness and health goes both ways though we never expected this did we?? Like you one of the hardest things I struggle with is what it is doing to him and to his life. It amazes me that he still loves me but he says sick or well I love you (though not as much when you have a headache:D) I guess we have to remember that we are their life just as they are ours. I just wanted you to know how I understand and you know the fact that you are worried about her shows your love for her and I admire that.

I do have 2 other men that have this and would be glad to give you their email if you would like.

Never worry about venting becuase we all understand and we all support you. And sadly to hear that someone else is going through and feeling what you do sometimes helps. The sadness is that we have to deal with this stupid disease.

I wish you peace and a better day,

Vent away it helps!

Stacey :-)

[persephone]

Standupsitdown--you are AMAZING. So brave, so eloquent. so honest. Wwe are here for you. It often does get better- I find I go in cycles wher eI am really debilitate and then I'm ok again for a while- a bit like fortune's wheel, I guess.

Thanks for sharing that- it was really powerful to read.

[morgan617]

I'm sorry you are going through such a rough time. I know from experience this won't help, but please know that this is as hard on women when they are so dependant on their husbands. Mine does practically everything, besides working a thousand hours a week, and I've just been told I'm doing it for attention. Wow, that makes you feel like a million bucks....

This is the place to vent, whether male or female, because we have all had these feelings of helplessness and hopelessness at one time or another. Sometimes all we have is other people who know just how we feel.

You are very lucky to have such a supporting and loving wife. I also feel very blessed, which seems to pile on the guilt doesn't it? However I know I would do the same for him, as you would for her. Others have not been as fortunate as we are, so everyday I tell him how special he is and how much I appreciate and love him. It's not much, but it seems to be enough for him.

Even if you don't feel a lot better, it seems we all eventually adapt to some degree. Still have lousy days, but I never thought I could get used to not working, and once I realized and faced my limitations, it seemed to make it easier. I tend to be realistic to the point of pessimistic I guess, but I find it's nicer to be pleasantly surprised than get my hopes up just to be dashed. One day at a time. I hope you have plateaued and then will get a remission of sorts and can do a little more. I'm sure this is heck being forced to be a metrosexual, when you really don't want to be, but none of us want to be here. I think when a lot more guys start letting it be known that they aren't well, this disease will be studied a little more. So give yourself a pat on the back for stepping up to the plate as opposed to falling on your face and never trying to find out why....morgan

[MightyMouse]

Men are brought up in most cultures to be the primary provider, so when you are put into a position where you cannot do that to your own expectations, that's a tough thing to learn to cope with.

As for venting, we all seem to take our turns here. Mine has been pretty frequent the past few weeks, so that's a new one for me.

As for this being just once, well, if that's what you want, that's cool... but if you need to do so more, that's cool too.

I go through many of the same issues you do, such as feeling badly about what I'm contributing to the household in pysical effort. I feel guilty never being able to to yard work like I used to. I used to also be "mrs. fixit"--and I just can't these days. I could sweat pipes, lay tile, install locks, fix leaky toilets, yada yada. When we first moved in, I helped install the hardwood floors. But, my life has changed, and I've had to accept that my body no longer tolerates as much as it used to. It also helps to have a spouse who has never once made me feel bad about my lmitations.

Not sure that helps you any to know you're not the only one, but I hope it does. Nina

[Poohbear]

Sorry I'm so late at chiming in here.

Just wanted you to know you aren't alone and your feelings are very understandable.

This illness really does affect not only you but those closest to you in your life. I'm glad you have some support. I also understand how much you wish things were different and that you didn't need the support.

Allow yourself the time you need to grieve your losses and frustrations. Do your best to keep communication open with your wife---share your feelings and allow her to share her frustrations with this illness as well. She also needs a place to be heard and allowed to vent (let her know she too is welcome to join the forum! )

All of us are different. What helps me is to have a therapist I can vent to so I'm don't feel like I'm always draining my friends & family. She is also good at reminding me to honor my own feelings and needs. Then, it also helps me to try to focus on the things I CAN do; it helps me keep things in perspective.

I hope you are having better days!!

[morgan617]

Very good point Pooh. My therapist is a real lifeline for me and a good thingfor my family as I don't vent as much to them. It takes quite a bit of the pressure off. I will take my hubs in with me, on occasion, so he is allowed to discuss how my illness affects him, on all levels, including sexual. It really helps us communicate better to have an objective person helping us through difficult times. morgan