Dysautonomia is destroying my life

[purplefocus]

I try to stay positive and hope for a better tomorrow but enough is enough. My marriage is starting to spiral downhill due to this, due to the stress of me not being who I was, not able to work, financial strain, of course I have lost my identity. I am not able to be the mother I was, I am not the friend I am use to being or the sister or the aunt etc etc etc. I thought maybe I was just having a pity party but I don't think so, things just really aren't getting better and I don't foresee them getting better in the near future. I can only stay on this wild ride until it crashes or stops which I hope is soon. I am sure I'm not the only one that feels like this. Sorry folks I just needed to vent and you guys are the only ones that can understand.

Paige

[MightyMouse]

I understand your need to vent. Life changes with this illness...and for some of us, those changes mean that we, in turn, change too emotionally. Adjusting to those changes, in my opinion, is far harder than any of the physical limitations--staying positive, alone, isn't likely to be enough.

I know this is a "touchy" subject with many here, but for me, it took me several years of counselling to come to grips with who I became when this illness hit me full force. While I've had it all my life, my major limitations started in my late teens/early 20's.

Do your best to take care of yourself emotionally. Get help, if you can. Talk to the people you love. Write if you can't talk. Use this board to get support when you need it... and recognize that this illness DOES change many things, but doesn't have to mean the end; it just means that life is different from that moment, forward.

Sending you good thoughts. Nina

[JLB]

...and recognize that this illness DOES change many things, but doesn't have to mean the end; it just means that life is different from that moment, forward.

That's right. It's different, not done.

I read someone somewhere talking about how the good days - even the good moments - are pure gold. We enjoy them like others cannot. What are your symptoms? (I'm new here, so I don't know much about the others yet.) Mine are mostly cardiac, or at least the most debilitating aspect of the illness is my heart rhythm.

I know how you feel, though. I've had those thoughts myself.

[nantynannie]

Hi Paige,

My reply is in no way meant to minimize your feelings...I also feel the way you do, some days I am more upset about it than others. On the bad days when I catch myself in those moments I try to be thankful that I am in possession of all four of my limbs, have my eyesight and I am not on a colostomy bag. I also try to remember the people who have total autonomic failure and are much sicker than I am. I am so grateful that I don't have that.

It helps my mood to think of these things, because it puts my situation in a better light it seems. It does not last forever, but makes me feel better at the moment...

Ann

[purplefocus]

Thank you guys for the encouragement and I totally understand what everyone is saying.........but.........my worst times is not when I am feeling poorly, it is when I am feeling good..........the reason is ..........I want to be at work........but I can't hold a job down by being only able to work a few "who knows when " days a month............I want to hop in my car and go shopping or where ever I wish..........but I am not allowed to drive because of the "who knows when" I am gonna pass out..........so see...........it is like I am a prisoner when I feel good...........ok ok ok still venting.

Paige

[nantynannie]

Hi Paige,

I had no idea that you were not able to drive. I am truly sorry about this, it must be a great burden to be forced to rely on others for transportation. I wish I could help...

Ann

[MightyMouse]

Hi Paige, I understand what you're talking about. I spent a year completely homebound as I was not permitted to drive after a whole bunch of spinal problems and a few surgeries. I understand the sense of isolation.

During that time, I made a point of trying to visit with my neighbors. Seems like something silly, but kept me sane. They all have kids too, so when I was feeling pretty good, I'd watch the kids for a bit and let the parents have some time to do things like the laundry, take a shower, etc. Made me feel connected to the world again.

I also spent lots of time on the phone... thank goodness for my cell plan that allows for free in-network calls; most of my family uses the same service so it didn't burn up minutes and cost me lots of cash.

Sadly, I had almost no visitors during that year... and I really missed being at work... so I tried to do some things that made me feel productive. I made jewelry--I'd had the supplies for a long time, but hadn't done much with them in years. I still keep that up.

When you are ready, you might want to try looking into work options that can be done at home (not those things you see ads for, but a real job). My neighbor works from home helping a local swim team by answering calls (they have a phone line they pay for that's at her house), printing out the practice schedules and swim meet calendars and then mailing them to all the members, etc. When I was home, I used to do proofreading for my mom's business. Just a few thoughts--not sure if you have enough "okay" days to work.

Nina

[blackwolf]

Dear Paige,

You are not alone, EVER. I to am mostly home bound, I cannot drive because of the low Bp. My salvation has been a great family. I don't know about all of your problems, but I'm on SSDI. I have been "unemployed" since June 17th, 2002. I was a nurses aid in a nursing home in a town about 20 miles from where we lived. I was 1 week from signing an agreement with my boss to help to get my RN degree.

I have great hobbies. I crochet and sew small, simple quilts for kids, I sell what I make once a year at a local flea market. I go in the spring, when it's nice and cool. The church I belong to helps make quilts for both local and distant missions. Do you have a hobbie? Anything you can do? I ask for scraps of fabric or buy at a local discount fabric store all of my fabric and yarn. There are lots of catolog sales these days. About 10 to 15 of my quilts make it to the "Cuddles and Comforts Project", a group of churchs in the area make quilts and soft toys for kids for police, fire and hospitals to use. I know how hard it is to do stuff, I try my best and I can work my own hours.

Good Luck and hang on tight!!

Blackwolf

[Dawg Tired]

No, Paige, you aren't alone. I had to quit working in September of 2002 and I had to quit driving 3 months before that. For the first 3 1/2 months I was home all I could do was lie in bed. On "good" days I could roll over on my back and look toward the ceiling. I say look toward the ceiling because, even wearing my glasses I couldn't "see" the ceiling. My husband had to help me get to the bathroom and back and one of my friends had to come to the house a couple times a week to help me bathe. And all this time some of my doctors were telling me that it was all in my head. Eventually things improved somewhat. I thought it was a great day when I made it all the way to the living room and sat up in a chair (with my feet on an ottoman) for an hour. It wore me out so bad I slept for 20 hours.

I have days when I get "down". I was not planning to "retire" at 43. All of the money I paid into retirement accounts has long since gone to doctor bills, COBRA insurance and just generally trying to survive. We are living on food stamps, Medicaid and $50 a week my husband makes. We have both been waiting for almost 2 years slowly making our way through the Social Security system. I have lost many of my fine motor skills so the sewing, embroidery and crocheting I was planning to do in my retirement years probably won't happen. But my hubby and I have decided to enjoy these years together. We go for rides - when we get the gas money, we enjoy friends coming to visit, I have a bird bath outside the kitchen window. My one "must do" task a day is to attend my bird bath. I know it isn't much but at this point in my life I realize I have to have small goals. Sometimes we have to give ourselves permission to achieve less.

[Ling]

You are in allot of pain at the moment and my heart breaks for you. Please feel free to let us all know how you feel. It is very important to express you feelings. Your focus needs to be on yourself at the moment. I feel that you are broken inside and need healing with in desperately. Find someone you can go and talk to regularly .... a priest from you church. When you are home spend time and talk to God. He is doing something special in your life at the moment. And at these times we truly need to get closer to him. I am reading a book called Purpose driving life by Bruce Wilkonson. Sometimes I just want to cry and cry when reading this book. I believe it could possibly be just what you need, its not an expensive book at all. Your strength comes from God and all your answers are with him. Just talk to him and spend time with the word. It is all going to be Okay! It sounds to me like you are depressed and this is not wrong at all. Even if you need to take medication for a while don't not consider this. It helped me in a time of my life when everything was just plain ****.

You are in my prays be strong and thinking of you

[ethansmom]

Paige,

Please don't feel bad for venting here. We are here to share our positive experiences as well as lend support to each other when times are tough- which they are bound to be at one time or another. The good news is that when times are rough, they WILL get better eventually. Every experience we have in life makes us stronger, and I truly believe that having this illness may have changed who I WAS, but it's made me who I AM today. A strong, assertive, independent woman with goals and a positive attitude.

But...it wasn't always that way. I got sick when I was only 19 years old, had just started college and moved in with my boyfriend of 2 years. We had our own apartment, well paying jobs, and the happiest life I could imagine...and when I got sick I couldn't work, we had just moved into an apartment paying $1200 rent each month and David had to carry that burden all on his own for the entire year until our lease was up and w bought our home...which was better on the monthly payment but still tough. I laid in bed, like the others here, happy to just stare at the ceiling...with my sunglasses on because I couldn't stand any amount of sunlight in my eyes. I crawled to the bathroom, I had nobody to help me because David had to work so we could survive. My mom came up for a week during the worst of it and it was then that she took the initiative to find a decent doctor who was able to diagnose me with POTS, and it was still a good 3-4 months before I saw ANY improvement. During that time was the most difficult, I was convinced that I had yet another misdiagnosis

I was so depressed, it was the worst time of my entire life. I did not want to live, not that way...and to top it off, David decided he didn't want to live that way either, and he wanted to separate. Our relationship was young and it had been spiraling downwards too, for a long time- I just failed to see it, or care, because I was so wrapped up in my own misery. He wanted an independent woman who could take care of herself and contribute something to the life we had started together- and I wasn't the person I used to be at all. I like to think of it as my transitional period between before and after POTS. 2 days after David left I discovered that I was pregnant- I wasn't sure if I should jump for joy that something good was happening in my life, or cry for fear that I would have to fnd a way to support this baby on my own, sick as a dog for the rest of my life. Luckily, David came by that night to pick up some things and told me that he missed me, felt bad and wanted to work things out on the condition that I change my attitude for the better. When I told him I was pregnant things looked up from that moment on. I felt so healthy for the next 9 months that we were able to have fun again, I even worked part time. Ethan SAVED me and he is my miracle Our relationship blossomed and we've made so many positive changes in our life since then. Times can be tough STILL, but we are both learning to modify our lives for this illness. It isn't always easy, but I am confident that no matter what happens I can make it through.

I work from home, selling on e-Bay...people might say it's not a real job, but I can make $400 in one week during peak seasons working 20-30 hours at home, on my own time. I can sit in my PJ's all day or I can get dressed in the morning depending on how good I feel that day, and it's great. I can take a nap and still feel like I accomplished a lot that day. Gayla is right- it's the little things that really matter, and start by setting small goals for yourself. What can you do to help with the finances from home? What can you do to help the way your spouse views the situation? I've found that resisting the desire to complain about my every little symptoms unless absolutely neccessary, does a world of good for our relationship. I just had to ask David to just be more sensitive to things like parking up close, waiting in lines for me, and not asking me to go to an amusement park when it's 100 degress outside...so that I won't have to say NO all the time. When I'm feeling good I ask him what he wants to do that day, and I try my best to have fun even if I don't feel 100% perfect. I think reading a book would be a great help, too- I don't have any personal recommendations but I know for me reading is theraputic. Take a cool bubble bath and curl up with your book, and if that's all you do that day then you've accomplished something wonderful

I better go before I write a book myself, please keep your head up and don't get discouraged...we've all been in your shoes and we are here to talk anytime!

[corina]

Paige,

POTS seems to destroy your life, I do agree, and your defintely not the person anymore you were before. But than again you can become another you, who can't do the things she did before but there still remain things that you can. I started on painting which works very good for me although there are many days that I'm to tired or dizzy to take the stuff I need. I can be a good mother although I don't play tennis, football, go scating etc. I CAN play a game of chess or listen to my childrens stories when they come home from school. Life has become totally different since I cannot drive anymore and I'm in a wheelchair, but still there's another ME and I think this new me seems to be a very strong ladie (in fact I didn't knew here before) and I'm very happy with her. Though it's still a pity she has POTS

Corina

[MomtoGiuliana]

Paige

I know how you feel. I also had that feeling that I wanted to give up. It was just too hard -- sickness and guilt was ever present day in and day out. I was sick in bed after my daughter was born for months. Everyone thought I was depressed (and I was, of course--but the depression was due to being so ill). I also had days and days of staring at the ceiling, heart racing, too weak to do anything but breastfeed and eat and crawl to the living room once or twice a day, crawl to the bathroom. Thank goodness my mother was with me all that time to care for my daughter and me. That feeling of tremendous guilt that I couldn't be everything I wanted to be for my baby daughter at what is supposed to be a wonderful time, was so painful. Also, I felt so guilty that I needed others so badly. My husband also had a hard time with it. Although he was and is deeply committed to me and our relationship, he got so angry with me for my "bad" attitude. It didn't help--it made me feel even more that something was intrinsically wrong with ME--not my body.

Please, please consider counselling with someone with expertise in chronic illness and talk to your husband about joining you. We also did some counselling--it helped me A LOT. I think it helped my husband too, although he's never been really sick a day in his life, so can't fathom why someone could have a "bad" attitude.

How long have you been sick? How long have you had bad days in which you are unable to do anything you enjoy? Do you have good days too? I know for many of us POTS seems to come and go in cycles of sorts. When we are in the downward spiral part of it, it is hard to believe we will come up again. I know it is the hardest thing!

Breathe and believe that better days are ahead.

Thinking of you.

Katherine

[corina]

Paige,

what I meant to say to you (oh this brain fog) is try to keep up . And as everybody will agree it IS very hard, but I know things will become a little better for you maybe not as in your symptoms but in the little things that surround you.

Corina

[danelle]

Paige,

Your post sounds like me to a "T". I am having ALL the same feelings that you are. My marriage of 20 yrs is struggling as well. I feel like I have failed everyone, including myself too. I had to give up my job last month after fighting this thing with all my might. It just wasn't enough. I worked so hard to get my RN degree(Married with2 children and working too)!! I was making very good money ($32/hr) and I had to give it up. I was supposed to start back to school this fall as well, I had already received a scholarship and everything but I physically just can't. I ended up having to file for SSDI 2 weeks ago and we are already feeling the affects of my income being gone. My teenage sons have had to get jobs to help out-which makes me feel less than human.

Everyone had given such great ideas and advice and I will try and learn from them as well but sometimes it is just hard and you do get down, real down. I am there with you and just wanted you to know that. Please hang in there and try and take some of the positive things others have said to help yourself and I shall do the same.

Thanks to everyone for your positive input and support, it sure does help

Many hugs sent your way, keep us updated,

Danelle

[Jersey Girl]

I'm so sorry that you are feeling this way. I know it was hardest for me when i couldn't drive for a few months. Even now I have to limit when i go out and can't drive for an extended period of time or in rush hour. You should probably get some professional counseling if at all possible. Chronic illnesses do take their toll on an entire family. I also feel the isolation of not working as I did for so many years.

[purplefocus]

Thanks everybody, I am feeling some better today. Danelle, like you, I also am a nurse, I have been for 17 years and when I had to quit in Feburary it was so devastating, not only the lost of income but my identity. I love being a nurse. I also have 2 children they are 13 and 3. The oldest one is going to be starting back to school again and I have no idea what I will do on my bad dads with the 3 year old. I only have one sister and one gf that is willling to help and they are very busy with their own life. I do know things aren't as hopeless as I was feeling a few days ago, I'm not sure what gets me or others to that point. I thank everyone for your encouraging words and the feeling of knowing that other people can get thru this then I can to. I think I should focus more on one day at a time for awhile instead of the future. I think that is where I start getting depressed. Everyone of you are wonderful.

Paige

[danelle]

Yeah, that has become my new motto "One day at at time", it may sound corny but it seems to keep me from getting too overwhelmed (for the most part). There are some days I even take one hour at a time. Hang in there my fellow nurse and POTS friend, we will make it just fine!!

Hugs,

Danelle

[purplefocus]

Thanks Danelle,

Now see how simply just nice caring people like ya can put a warm spot on my heart. I think we where sent here to be each others angels. Look at what 24 hours can do. I went from being caught in a turbulent mood twister from h*%% to finally chilling out.

I really wonder how I got alone without you guys.

Paige

[danelle]

DITTO