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My Parents Think I'm Lazy

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I'm going into my senior year of high school and I've been struggling since the summer going into my freshmen year. It started off with urinary problems and got progressively worse. I've had these symptoms for so long they just became normal for me and they made daily life very difficult. I used to be very active. I took a dance class and a yoga class everyday, I loved it. I loved being active. I really liked school too. Now it's extremely hard for me to be active and go to school. I missed 430 classes last year and almost failed my junior year because all of my absences. I'm missing out on my high school years. 

Im still not officially diagnosed with pots by a cardiologist, my amazing GI doctor was the one who realized I was struggling with pots. We did a test at home using a heart monitor we had. I layed down for 5 minutes and we checked my pulse. 64. Then we took it every 2 minutes for 10 minutes. It continued to rise until I fainted after 7 minutes of standing. I can't say how thankful I am to finally have answers. It means so much to be able to connect with people who go through the same things I do. 

Im writing this post because as much as she tries to my mom doesn't understand. I don't expect her to because you truly don't know the struggle until you've lived it but it makes me sad because she gets frustrated with me.

My mom thinks I'm not doing anything to help myself. Not eating salt. Not eating or drinking water and not exercising. All things that are very hard for me to do. I'm trying but I'm very frustrated and hopeless myself. I've tried so many things and nothing works. She's also frustrated because school is such a challenge. Right now I'm doing virtual school over the summer but I'm having a flare and haven't made any progress for quite some time. The dizziness and headaches make even thinking about school impossible. 

I have also been diagnosed with AMPS (amplified muscoskelatal pain syndrome) IBS (irritable bowel syndrome) early satiety (making my stomach unable to stretch so I get full very fast and get nausea and tremors after eating) and gastritis. Everything together just makes life overall misery. I just wish my family and friends could understand how hard I'm trying. 

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Hi Shelby!  Many ((((hugs)))) to you!  I have fewer diagnoses than you and am older (30's) but I can relate completely.  My husband doesn't get it.  He didn't believe it and thought I was faking.  So I had him take my pulse before and after 10 minutes of standing. It was "only" 120 and then I fainted.  His first words were about if I was faking, but I later learned from his employees that he was pretty freaked out by it.  He kinda gets the tachycardia now.  He doesn't really believe it yet because I haven't had tilt table test.  I have preliminary POTS diagnosis from my primary doc and a neurologist.  I see a cardiologist in 2 days!!!  Anyway, he really does not understand the fatigue.  He DOES NOT GET IT.  He doesn't understand that dramatic blood pressure changes leave me feeling disoriented and irritable.  He has thought of me as crabby, lazy, and crazy for 8 years and it's hard for him to adjust.

As a parent, I feel pretty confident that their seeming annoyance and pushiness is motivated by FEAR.  They're afraid for your future - what happens if you don't graduate or don't graduate on time.  How are you going to support yourself as an adult?  These are the big questions looming over their heads.  They're TERRIFIED for you.  They're freaking out because they love you so much.

You may want to talk to your parents about Social Security Disability for yourself.  It's not a whole lot and it sucks to accept it, but you do need resources for transitioning into adulthood and independence.  You need continuation of health care as you transition into adulthood.  Perhaps you can look at jobs that can be done on your own terms and direct your education towards something you can do even when you're ill.  I know it's all scary and exhausting, but anything you can do to grow more independent and secure will help relieve your parents' fear and their pressure on you.

I wish you the best!  I hope you hang around here and participate.  

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Dear Shelby,

I can relate to so much of what you are going through. I became debilitatingly sick at 20 (I'm now 25) but was dealing with medical issues that delayed me in high school. There can be so much pressure, and I know not just from your parents because I'm sure you also want to reach that achievement of completing high school. I was blessed to be homeschooled and so my mom would allow me to work when I felt I could concentrate, if that meant 2 hours in the middle of the night and sleeping through the morning she was alright with that. It took a while to get there though... can you talk with your parents about how you are struggling and tell them what you feel you could do? Have you tried just doing a few minutes at a time? Sometimes I could only handle 15 minutes before needing a break, but at least I felt that I accomplished something, even if it was one math problem in an hour.

I'm sorry that they see you as lazy, it can be so hard to change people's perceptions. Sometimes you just wish they could spend a moment in your shoes...

In terms of things to help yourself, I find it important for myself to take tiny baby steps. You can't change overnight but maybe slowly do just a little bit more, one more sip of water, one more pinch of salt ect. I had to work my way out of being stuck in bed unable to do ankle pumps without passing out, it was incredibly difficult and I would never wish it on anyone. I did learn a valuable lesson to look at even the tiniest bits of progress as a triumph. I literally increased ankle pumps by 1 a day for a while and so on.

I also deal with many gut issues similar to yours. Have you tried sleeping with your head greater than 35°? I thought it was silly at first but it makes a HUGE difference for me. IDK it's just one of those easier things to try... 

Will be praying for you! May God give you wisdom in your decisions moving forward.

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