Some days...I feel like a burden

Some days, like today, I forget how bad and debilitating my symptoms can really get. I have had some fairly good days this past month, until today. I was sort of brain foggy all day and just mentally out of it. I went to a football game. At half-time, I went to the bathroom and got really dizzy. And then my night just escalated. By the time I get home. I am so dizzy and weak. It is hard for me to even stand up because it feels like my legs are going to give out. My whole body is shaky because my nervous system is freaking out. I can't relax and when I have to get up to go to the bathroom or get water, my heart freaks out and races and then by the time I sit back down again I feel even worse. This is a bad day. I will get bad days. But on the good ones it is ok to forget about those days because it will drive you crazy if all you do is remember how terrible you felt. And now I am thinking, will I ever fall asleep and how will I feel tomorrow?? Also, can I make it to the bathroom and back again? Maybe with a few stops on the way. And by stops I mean sitting down. The worst part is I feel like a huge burden. No matter how much they love me. I will always feel like a burden. 

My lovely set of symptoms...

Some of my friends and family ask what my symptoms are, which is sweet because then they get a better understanding of what is going on in my day to day life. So I decided to post them. There are two kinds of symptoms that I get; heart and non-heart.

Heart Symptoms:

• palpitations
• heart racing (tachycardia)
• chest pains
• shortness of breath
• fainting
• dizziness
• arrhythmia 

Non-Heart Symptoms:

• numbness and tingling from elbow to fingertips and hip to toes
• bad cramping in hands and feet (it feels like my fingers will curl sometimes)
• stiffness in hands and feet mostly, sometimes throughout whole body
• headaches
• brain fog
• cramping in calves and feet-toes curl
• fatigue
• easy exhaustion
• skin hypersensitivity
• tremors (usually in my hands and legs but sometimes turns into body tremors) 

Redefining 'normal'

I was told that I set unrealistic expectations for myself. I thought that when I was diagnosed with POTS that, sure it would be hard but, that I could handle it. I can handle it but it is one of the hardest things that I have ever had to deal with in my life, so far. I have been overwhelmed recently about my treatment options (there are so many) and it takes so much time and effort. I am a full time college student, thinking about going to law school. I should not be thinking about treatment options and trying new medications, I should be thinking about whether or not I want to go law school and how I am going to pay for it. Since I have been overwhelmed with all of this, I think about it all the time. I try to keep it in and act like I am totally fine with how my life is changing, there are those unrealistic expectations. But I am not fine, so I will keep it in for as long as I can, then one day a flood of emotions come out. Being diagnosed with a chronic illness that I have to live with for the rest of my life is physically and emotionally draining. So, when those emotions come out the only thing I know to do best is talk to someone that has been a huge support ever since I was diagnosed. During our conversation, I learned that I have unrealistic expectations and that I need to redefine my ‘normal.’ I have been living with this illness for about four years but have only known for five months. So, right know I am grieving the loss of my ‘normal’ life. Such as, being a typical college girl, not being able to do simple things anymore, finding a treatment and meds that work for me, not knowing when the bad days will come, possibly skipping class because I don’t feel good (I have already had to do that), possibly embarrassing myself in front of someone by passing out. There is just so much change when I was diagnosed that I have to redefine my ‘normal.’ I have to redefine it to something that is easier for me to live a full and happy life. So I can finish school and get a career on track and maybe go to law school. 

It can be so hard...

It can be so hard trying to figure out a treatment plan the works best for you. Hearing what has worked for others and what hasn't. It is like, who do I listen to? I see so many different doctors and some of them don't even know what I should do. I am surprised when they even know what POTs is. I literally have know idea when I even have time to figure out this treatment plan.

 

Do I want to treat the symptoms or try to use biofeedback to attack the problem?? And biofeedback may not even work...so that is my problem. It cost loads of money, that insurance may not even cover, to go to Mayo Clinic to get a treatment done, that takes a week to complete. I have heard many positive and negative things from people and research that I have been doing?? Finding a treatment plan for POTS is like the hardest thing I have ever done and it is so overwhelming. At age 19 I never thought I would have to deal with something like this. I think I may just go to see a specialist about my problem in finding a good treatment to hear all of the options and reasons on what I should do, before I choose.

 

I am extremely overwhelmed with having to figure out what is going to work for me. I am in college and I can not put that off. Anybody have any thoughts??