Having A Bad Day! How Do You Or Have Coped With Pots?

[Latacia]

Well today has not been a good day for me. I haven't been diganosed with pots for that long and I am still grieving the loss of my former self. I am always having new symptoms and I feel as though it is getting worse. The town that I live in has a few cardiologist that don't know anything about pots. I go to a doctor two hours from home. He's the one that diganosed me with pots but told me he doesn't know that much about it and it's not his specialty. I can not afford to go out of state and pay outrageous money to a doctor that I don't have. My family doesn't even try to understand what is wrong with me. I ask my self why me sometimes. I feel like I'm too young to be dealing with all the problems that I have. I have filed for disability and have been somewhat discourged about that. My disability examiner is always telling me "your just too young to be disabled." I would love to get a job...**** I can barely take care of my kids.

Ok , so now that I have said everything above. How have you coped with your diagnoses? Thanks in advance for your time and responses. I have really found comfort in talking with you all on here. It's nice to communicate with someone how actually knows what I am going through.

[Ernie]

Hi,

I have my friends, my family, dinet and professional support.

[Brye]

I held my own personal pity party, then I moved on and focused on what I needed to do to make myself function again. I couldn't work so I applied for disability. The money from that has helped me regain control of my life. I had a REALLY hard time keeping up with my kids. I hired a babysitter to help a few days a week. I hired a house cleaner. I joined a cardiac maintenance program at the hospital fitness center. I have put my kids to work helping out around the house. On days I'm too tired and need a nap I've decided my kids brains may be a little Wii fried but they will survive.

I've been sick for about 4 years. When I began having problems I had a friend with 2 young boys who became sick as well. She developed colon cancer and passed away less than a year later. I'm SO thankful for each day I can hug my kids and get up out of bed and spend time with them. I have bad days too but I try really hard to focus on the positive and never give up. My family needs me and I want to be sure I'm doing everything possible to live the best life I can.

Brye

[icesktr189]

Honestly.. counseling helps the most and dinet. I saw you suffer from anxiety. That is one of the biggest things you need to treat first. Physcial illness stinks, but mental problems can get you down very fast. When my anxiety is bad and also depression, my coping skills go right out the window. Obviously if I wasnt sick I probably wouldnt even have anxiety/depression in the first place, but until that day happens, I treat it.

Just talking to my counselor makes me feel like my emotions are not crazy and that what I am experiencing is very normal given our situations. I would really suggest you get one. I am not trying to discount our illnesses, but not taking care of the mental ones is bad.

[Shotokan7576]

Hi, I know how you feel. I have been dealing with POTS now for about 2 1/2 years. I was going to college and was in Nursing school when I got sick. I was also very physically fit adn participated in many sports. The first year was extrememly hard for me dealing with everything that I had lost. I still feel a deep loss, but I realize that this is my life now and I have to make the best of it.

I have a wonderful family husband and 2 girls. My extended family is very helpful and supportive.

Out biggest concern at the moment is finances. We lost our house because of this. I have been waiting for SSD for 26 months now. I just had my Hearing after being declined two times. I am hoping that I get approved it would really help my depression and feeling of worthlessness.

WEll I hope your condition levels out soon, and you start feeling better.

God Bless,

Jen

[RockiesGirl]

I am sooooo lucky/blessed to be able to work from home!! I was diagnosed in January but I had Cervical/Uterine Cancer 3&1/2 years prior to that. It has been a long road, but I am happy to finally have somewhat of a diagnosis.

For me, as I hope it is for you too....the symptoms seem to come & go. Some months are awful and some months ok. All I can say is hang in there

Also, I have a great support system in my boyfriend and friends.

Sometimes I get down too and my friends aren't always there with a shoulder. So far, I have been able to handle it w/o talking with anyone like a counselor, but I really think it is a good idea.

Take care and keep writing etc. It is a good stress reliever.

[janiedelite]

I have coped with my illness by volunteering. I wasn't sure how reliable I'd be if I had to drive somewhere to volunteer, so I started by volunteering on DINET as their Volunteer Coordinator and now as a Moderator as well. I also helped at my husband's school because I knew I could lie down in his office as needed. Last year, I volunteered as a foster parent (with my husband and other family member's heavy support). We only had 1 child most of the time, occasionally 2 kids. This year I'm going to try to volunteer at a local elementary school. I'm going to help for just a couple hours at a time. The school is 3 blocks from my house, and I plan on bringing my seat cane so I can sit as needed.

It's so hard to be a volunteer sometimes, but it forces me to get moving. I do feel worse sometimes after pushing myself, but this illness can be so isolating and can keep us from feeling productive. I'm thankful that I've gotten my symptoms under control enough so that I can help others.

[GingerA]

I feel your pain. I spent twenty years building my life around a career that I can no longer do. And like you I have doctors that are trying to help but really don't know any more than I do about this condition. I had to look at my life and realize that I am still a person of value and I can take care of myself.

I have bad days (to be honest I have had several lately). The information that I get from this site is a huge help. I also am learning tricks that work for me on a day to day basis like keeping a notebook with me to write down things because I have a HUGE problem with brain fog at times. Also I had to learn that if I feel I need to rest then I have to rest or I will crash. From what I am learning about POTS, it is a very person specific condition and you have to be open to suggestions and learn what works for you.