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Pity Party-Picking Up The Pieces-So Much Stress


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I cannot believe what havoc this stupid disease has taken on my life. And now, i have to pick up the pieces. Its miserable. Since i have had pots, no one in my life has supported me. My family and friends all called me an overzealous hypochondriac. Now, here i am, trying to put this garbage of a life back together on my own, with 1/4 of the energy i had in the first place. To put kindly, i hate this disease times every swear word in the human language. I have to get a job because now that i am feeling better, i know there is no way i am going to qualify for disability, not to mention my claim was denied in the first place. The lawyer i talked to told me to expect this to play out for 3 years. In the mean time, i have student loans that are defaulting, dr's bills to actually get care, etc. that no one is helping me with. I am in debt because of this stupid thing. This disease has made me selfish. I have been a very giving person my entire life, and now with less energy and resources it makes me not want to give anything to anyone. They are not helping me when i need it so badly, so why in gods name should i even consider helping them?! And it is okay for them not to help me, but in doing so, they are more than happy to call me a lazy waste of society for trying to get disability, and also that i am capable of doing more. Please. Some days i wish i could let someone in my body for a minute so they could have one ******* clue what i am going through. This disease is also making me hate people. I am learning that almost everyone in my life is selfish and ignorant. Yesterday, i missed a dentist appointment for the third time. I have tried everything i can to remember stuff, less putting a note for every single thing i have to know hanging in my face when i wake up in the morning. I finally got fed up and went and got a planner. But then, i forget that i have anything going on that day and don't look in it. It is so stupid and it makes me so mad. Remembering an appointment is not that difficult, so why am i completely incapable of doing this? And then, i just sit there and beat myself up about what a piece of irresponsible garbage i am and what crap my life is. And what outlet do i have for this stress?? Nothing. I can't have a cocktail. I can't go for a jog. So it just bends back on itself making more pots symptoms. My dad and brother even told me once that if they were ever in my situation they would probably just kill themselves so that they weren't a useless mooch on society, or keep going even though they were passing out all over the place. I tried to explain that they could go ahead and try to live a normal physical life, but that they simply would not be capable of performing their usual exercises. They scoffed at this. I just wish sometimes i had made some better life decisions before i came down with pots, i think it would have made this whole thing a lot easier, but the grass is always greener on the other side, isn't it?

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Lemons if you are passing out obviously it's not advised to do too strenuous of exercises. Have you been able to get your calcitriol levels checked? Even if they are normal, there was a study I read that calcitriol improves endothelial functioning drastically such that it improves blood flow.

Additionally do you think you could do exercise bikes? They might be a good tool to help you build up so you're not passing out.

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Oh lemons. I feel for you. I can relate to everything you said. When the people you always thought you could turn to no matter what suddenly don't understand you/ don't believe you right when you need them. We/ you/ everyone who has disautonomia (or a illness for that matter) are not a waste to society even though at times it seems like we can't do much. You are on this planet for a reason. It's not your fault. That's been one of the hardest things for me to explain to people. I know what you mean- if anyone felt the way I feel on bad days they would never tell me I was just lazy. As for the stress outlet I find doing anything artistic is helpful for me. Or playing with a pet- they always understand. :) I'm glad your feeling better physically that's great news! We always understand what you're going through. (((((hugs))))))

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Lemons - Your posts have been so inspirational to me. I feel so badly that you are having such a hard time now. We all hate this disease and what it has done to our lives. Please look at the way you are feeling now as a bad day or a setback. You are not back to square one. Your positive attitude will return.

Lynne

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I SO hear you! I'd bring the tequila to the party if we could drink it! Gatorade will have to do instead. Some days life just stinks, today is one of those days...I know it was for me too. Say a few foul words for me too...I can't even say those, my kids would hear. Blast it all!

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Oh Lemons! :( I just want to send you a big hug!! I have been exactly where you are and I feel your pain :( it will get better though I promise....I have had this illness for almost 5 years and diagnosed for 2 years and its only in the last month that I feel like I am making a small amount of headway. Invisible chronic illnesses are the worst because not only do we struggle with the symptoms of being sick but we have to struggle with people's ignorance as well. In some ways its been a blessing because its made me have to rethink my life and the people in it.....I realized that in order to heal and get better I would have to get rid of as much negativity and stress as I could....that it was only adding to the illness. My family and friends were absolutely in denial about my illness even after reading the specialists consult notes, seeing me hospitalized and rushed by ambulance....watching me pass out, my legs turn blue, etc....and yet they still believed I was making it up.....it wasn't until I learned to stand up to them and threatened to cut them out of my life that they finally started paying attention....sounds harsh I know but for me it had to be done. Like you, I had been a giver and pleaser my whole life but this illness has forced me to make more selfish choices for self preservation and now I realize that those people and my old job, etc actually weren't doing me any favours regardless of my illness. I guess what I am saying is please stop beating yourself up! Your life is hard enough right now! You cannot control the people around you, all you can do is change how you deal with their behaviour....you are a good and kind person :).....you didn't ask for this illness, and you certainly are not a burden on society (I am sure you have paid your dues).....nobody knows what life holds around the corner ..... I always tell the ignorant people who make assumptions that they better hope they never have to walk in my shoes one day......what goes around, comes around they say...... hang in there lemons! keep your head up and stay strong! you have people here who understand and care....try to remember that on the bad days :)

Hugs

Bren

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Bren said it so well lemons ~ I wish I could give you a ((((((((BIG HUG))))))) and make it all better ~ I went through a lot alone @ first and I think it was denial because I had been sick most of my life. Now it's gotten real enough. TOO REAL! Lemons, you are a wonderful person~ Don't ever listen to family or anyone telling you that they would probably just kill themselves so that they weren't a useless mooch on society, or keep going even though they were passing out all over the place. Walk away and don't get dragged into the drama. The last thing we need is more stress ~ I believe there's a reason we all have this, I think we are all nicer people :) always ready to help a friend out, even if it's from our phone in bed ~PS: I WRITE on my hands and use WIPE OFF markers on my mirror to help remember things ~ I think that's ONE REASON why God gave us hands ~ :D

<3 Bellamia~

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I feel your pain.. No one should have to suffer though the daily struggles we encounter. Hopefully one of these doctors will have a major break through and figure out how to fix our issues.

Stay strong!

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We all know how this can be...so sorry lemons :( I will say a prayer for you!

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Lemons,

with the risk of repeating what others have said, it's OK to vent off, I'd even say it's healthy. I am fortunate enough to have a husband that understands, helps and suffers along with me, and a great doctor (not a POTS specialist but an amazing human being who has gone above and beyond trying to find answers for me). As far as everyone else ... I can't expect them to understand despite me trying to explain to them what my day to day life feels like now, simply because they don't want to.

Realize that you are not alone in this, you have so many friends here on this forum, and we feel your pain and frustration because we did/do walk many miles in your shoes.

It took me a while to figure out that I had "friends" when I was the generous one, when I was the one initiating a phone call, or when I was the one sending an email, or helping etc. When I was the one in need of help, everyone turned out to be extremely busy, unavailable, so I learned who my true friends are quite fast - unfortunately.

It's hard, frustrating, disappointing, but you are a strong woman and as difficult as it may sound you can ignore those who don't understand, or don't want to understand because of their arrogance, or ignorance, or both. You can prove to them that you are so much better than they are.

Hang in there and by all means don't pay attention to any mean comments people may make. Smile at them if you can and let them think whatever they want. You can't change them because they don't want to change.

Hugs,

Alex

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So sorry you're going through this with your family/friends! This illness is tough enough without taking flack from those that are supposed to be close to you. Just wanted to let you know I'm sending positive thoughts your way. I hope things get better soon!

Heather

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I'm sorry you're having such a rough time right now. My advice would be to minimize contact with people who are not supporting you. They will never understand and will only make you crazy.

I had my own pity party tonight. I was telling my husband that people just don't understand--even when I explain exactly what I going on with my illness. I am fortunate that my husband and my mom get it, but really nobody else does.

I have found my best organizational tools to be a wall calendar or my Google calendar (on my computer or my iPhone).

I hope you can find at least one peron who can try to understand you. Maybe through a chronic illness support group or church or something. You really need someone you can lean on!!

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You all are so awesome :) thanks to everyone for the supportive words. I am doing much better today and am learning how to cope with a new type of stress and frustration with pots. It is very new to me and is getting challenging at times. I guess its a good sign that I am getting some feistiness back. It means I am getting more energy. Still though, i have a big mess to clean up and it is going to be challenging.

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Hi Lemons

I am so sorry your family does not support you, but this family will. We "get it". When those bad days/weeks/months happen, I have to break the days down into hours and say "I am going to get through this hour". Sometimes I have to even say the next thirty minutes on a bad day, etc. Sooner than later, I would get through the day. Eventually a positive experience would happen that made things better. I have repeated that cycle many times. But I know I have friends on this site and friends who have stood by me, just like we will stand by for you.

For most of us, our lives have become very small. I have chosen to keep in touch with the people who still "lift me up" or people I can help. For family who do not get it at all, yes I have to deal with them, but I try to minimize my contact.

I am also seeing a counselor who has helped me immensely. There are many Samaritan centers that offer their services free of charge. Do you have someone in your area you can talk to?

I also had the same problem with missed appointments. I now use my calendar on my iPad - or I would use my phone as an

alternative.

Please PM me and I will be happy to talk anytime. Hang in there.

Trish

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I'm probably lucky in that I got pots at 26 after previously being a high energy person and with a ful on life style that changed dramatically and everyone I knew saw the difference. And I also got ank spond which people understand a lot Beyer and sympathise. But there are always people who don't get it, and really unless you have lived it you would not really understand the impact of dizziness and a few mild sounding symptoms.

I think you are one of the strong ones with the right Lindsey and you are actively doing everything to get better so in time you will most likely improve. I think the feeling of empowerment you get from a positive mind set helps to dampen the fear and leads to better outcomes with pots from what I have noticed over the years on these forums.

Don't fear exercise or even alcohol lol. Its not good for blood volume but I tolerate it ok at times and there are times when I do the things I want regardless because id rather not allow the illness to dictate how I've lived my life. Neither killed me and exercise I think has helped be out of all my pots relapses.

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You aren't alone.

I'm lucky that I have in some ways greater financial support, but it comes with a hefty emotional price and hasn't gotten me better care.

It is absolutely crushing to have to get out of bed everyday feeling horrible and try to lead a full life work and ADL-wise. I've been able to do it for the most part, but it means that I don't have any energy left for relationships, hobbies, furthering my education/career . . . for anything enjoyable. It is crushing to be in constant physical pain and discomfort, to never do anything but work or housework or be in bed in pain and so messed up you can't even follow a TV show. To be surrounded by no one that understands, and no one that can make an effort to show they care or treat you kindly, but instead say cruel things. To be told that you aren't ill enough for disability, for help doing ADLs from partners or family, and not ill enough for more agressive treatment. Basically you torture yourself all day long every day with no hope of respite. It is all good and fine for people to say you would be better if you pushed yourself or you exercised (I've never stopped doing either in the 5 years I've had POTS, yet have no improvement) or that you need to be more positive. Yes, I'm lucky I can get out of bed. I'm an extremely positive person that has been regularly evaluated for clinical depression and I don't have it. However, standing up literally makes me sad. All the lovely things I appreciate about being alive dissapear as my senses leave me and all I get is pain and disorientation from pushing myself. This illness literally impacts who you are on a personality level as well.

You lose everything, and no one cares because you keep getting up and dealing with your invisible illness.

I'm a giver too, and forging new realtionships is hard for me because I've had to set up boundaries for how much I am able to give without running myself ragged. I've been dating a man for 3 months now that I am probably going to get dumped by. He acted understanding and I gave him alot, but I finally had to draw that line in the sand this past week. I haven't heard from him since.

I currently am not eligible for disability, but have been looking for work for 9 months and haven't found a job that I could do with POTS.

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So sorry Elfie. I understand where you are coming from. I hope and pray that this is temporary for you. I went to town with my husband today and was so excited because I felt better and within a few hours I was in pain and in no good shape to be doing anything but going home. It can be a bummer. I did a tiny bit of whimpy yoga tonight just to make me feel like I did something and it did help my mood a bit. But somedays it's too much. Hang in there.

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Sorry Elfie, it is hard for others to be understanding, when there is nothing to see on the outside. Just yesterday, I went to Lowes with my husband to buy several things. I had to sit in their lawn chairs twice, and then I turned a bucket over to sit on it, waiting for him. I reach a limit, and then I have to leave. Even watching a movie, I had to squat to get relief from pooling, even sitting down! I still try to function, as normally as I can, though, and I have to say my medications have helped me immensely; I'm a lot better than I was, but it is still a daily struggle, depending on how I feel; I stay at home most of the time, and when I go out I am usually only 5 minutes from home, so even if I get in trouble, I can call someone, or better yet, go with someone.

Maiysa, I have a white Schnauzer, btw! She is older and more gray now, but I love spending time with my dog, too!!

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Kimbelgirl, Aren't the schnauzer's awesome. On sick days she sits on my stomach and doesn't leave and just stares at me. That's loyal. But sometimes I get fevers and wonder if she is just enjoying the heat. :D

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I love my schnauzer, Windy...I just got her groomed short for the summer, but too early (she was all matted because of wearing sweaters this winter); she was shivering when she woke up, poor dog, and she just got over "Vestibular Disease", too! I didn't know whether to laugh or cry; talk about sympathy from her master!! She is still stumbling, but much better, because I had to carry her everywhere, and I'm not exactly stable either...lol :) .

Back to the subject...How are you doing Lemons and Elfie? Any better :wub: ...we love you!!

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Thanks ladies, I didn't mean to hijack the thread. I just wanted to make the other's feel that they weren't alone. I feel pretty much like I am in exactly the same place as the original poster (finances not withstanding-- I'm not in debt, but I never have any money of my own to do anything with and am constantly worried about how I am going to pay for medical bills and trying very hard to "earn my keep" and stay on the good side of the family that I live with and am feeling pressured to find work despite knowing that it is probably not going to be something I enjoy or in the field I worked hard to get into and will probably make my symptoms worse and further cut down on what I can do). I think it can be a very hard place to be in if you don't have a great support system. Not everyone has a loving support system that helps them get out and do things with their good days, or a home that is a sanctuary, a spouse that is willing to support them without guilt, a job with an understanding boss doing something they enjoy, ect.

Personally not being able to make positive changes for myself and not having others that are willing to help is very hard.

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