All Or Nothing

[KaoruZ]

The reason why I'm posting this is that over New Year's, I went on a week long cruise with my family. I had a pretty solid week of very good days. By good days, I mean I had to make sure I ate, major hydrating, lots of sleeping, and every little trick in the book that we potsies make ourselves do. I had days that I was miserable and wanted to die, but I kept that to myself so I wouldn't ruin the vacation for everyone else. I just told myself to have fun until I collapse because I wasn't saving my spoons for anything else. I was on pure adrenaline. When I returned to my apartment, I crashed for a solid week. I can't even describe how miserable I was. I had no regrets, though. I spent every last spoon and then some to have the time of my life.

This has come back to bite me, though. My family keeps judging how I should be all the time based on my behavior during that week. I could hardly do that for one week, let alone all the time! I took two college courses last semester. I got so burnt out I wished everyday a skateboarder would run over me so I could get some rest. I became so depressed from burnout, but my family doesn't see that.

I had POTS when I started college, but it was not as bad as it is now. I went from being a full time student to only taking two classes. Now I'm taking the semester off to finish an incomplete course.

I am an art student with a concentration in painting and drawing. I've been finding it more and more difficult to do those things. I have been taking classes in digital art because I can do that for much longer than traditional media. I haven't been able to take some of my required classes because they are too dangerous for me. I'm having to make some important decisions right now with my education and life. However, my family has been hard on me. I feel like I can't change my concentration because I have a few good days here and there, but not enough to finish a painting on time. Plus the smell of paint and other media when I'm nauseated is horrible. My mom's advice of “pushing through” just like I could do for that one vacation just makes me sicker, crash longer, and burnout faster.

I just feel like my family either wants me sick and bedridden or healthy and doing everything with no in between. I know they just want the best for me. It just seems like when I'm having a bad day, they want me to push harder. When I'm having a good day and crash, I'm scolded for pushing myself. No happy medium is allowed.

[KaoruZ]

Sorry for the long rant. I just know that many here are trying to make major life decisions while having dysautonomia. Expectations and advice from the people that support us may be good or bad. I just don't know where to draw the line.

[DizzyGirls]

My 18-year-old graduated from high school last year and she thought she would try to take one class at the local Community college. She doesn't handle stress well, good or bad. She made it to her second day of class and ended up in the ER that evening. The more you push yourself, the worse off you will be. We were not pushing her, she so desparately wanted to do this. One stinking writing class was all she wanted to do. To be a college student. So, she had to drop her class, has suffered for an entire year, has had migraines every day for the past week, but she never gives up. She decided she didn't need to take the best writing class or be a college student in order to be a writer. So, on days she's not too dizzy (she has POTS and vertigo along with migraines and EDS type III), she's writing her own book! She's about half way done. She's a natural. Also has about 35 songs under her belt. (like you, my other daughter is an artist )

I tell her not to use up all her spoons at once, because you are only given so many for the day and when they are gone, they are gone. My mom used to always caution me to make sure she didn't overdo it. My daughter's never had a normal life. She's always been ill, but she has a tremendous amount of drive, she just doesn't always know when to quit. That's my job. I'm watching her much more carefully now, but it may be too late. Don't wait until it's too late to take care of yourself. You have an invisible illness that only you know how bad you are feeling, no matter how much you are smiling, you know how you feel. It's not up to other people to make that decision for you. Dysautonomia is not something you can push through. I would encourage your family to read some literature on Dysautonomia. If they won't google it, maybe you could print something out that best describes your symptoms. Hang in there and be strong!

Dizzy Girls

[Katybug]

Hi, KaoruZ. It's really hard to balance things with the family. Your post is very well written. Maybe you could share it with them, or, print it and accidentally forget it on the kitchen table. I think it's hard for the people around us to know what the right thing to do and say is. For example, I was a super independent "don't ask me if I want help because I don't" sort of person before I got sick. It has taken a long time for other people to feel comfortable offering me help again and for me to feel comfortable accepting it, or, asking for it. There is definitely a learning curve for everyone involved. You just need to be honest with them about your needs. (I know that's easier said than done.) Take care.

[KaoruZ]

Thanks for the responses. I'm just in education limbo. At least I know what I want to do. I'm just happy I didn't decide on metal working lol

To Dizzy Girls, tell your daughter good luck on her book. Art is very fulfilling. I'm super happy for her

[Becia]

I don't really have any advice for you, except I know how you feel with how your family talks to you (aka the pushing through speeches). My dad does the same thing to me, and my sister is the worst. My therapist once told me that I could be blue in the face trying to explain to those around me how I feel and what's happening when I do one of those intense days, if the other person isn't gonna get it, it doesn't matter how hard or long I try to tell them. I've said my peace, and once it's out, it's upon them to get it. There was one moment my dad actually got it...I was shocked. He's back to not understanding sometime again, but again, I've said my peace. If they refuse to see it from my eyes, or take into consideration what I'm saying, I can't change their thoughts.

I've pushed through a lot of stuff before, just for the sake of my family, and in the end, when I ended up in the hospital from doing too much, it surprised them. Going out to the store isn't just a casual lets jump in the car and go. Dad experienced this last week when I had to vacate my apartment for two hours because of the exterminator. I was sick as a dog by the end of it. He kinda got it then.

For my family, and myself, we are all having to see that I'm not the same person I used to be. Hard to admit, especially since I did everything before my body crashed, but it's there. I have one day a week that I go all out...store, church, lunch with friends. Sometime it's not the day after it hits me, it's the day after that one. Today is an example of that, I had a procedure yesterday, my friends thought I was fine aftere brcause I was up and making dinner for myself... Today, I can't get out of bed. I look great, but sitting up isn't happening.

I'm rambling, my meds for my migraine are making me tired. I agree, print out what you wrote here, let them see it. And just know that you've said your peace... Some will get it, some will not. Some will get it and then forget it even...but you've said how you feel, stand by it, and you do what you gotta do to survive this life.

Where did you go on the cruise? I did a 12 day Panama Canal cruise several years ago...it was amazing. I think for me, that's how I'd want to take a vacation again, because there was always something to do on the ship, if we didn't feel like going on shore (my mom was with us, and she was disabled, so sometimes we didn't leave). Kinda hoping I can take one again soon.

[DizzyGirls]

Becia,

My daughter always says that the day after may be bad, but the day after that is the worst!

DizzyGirls

[KaoruZ]

I went to Aruba, Curacao, Dominican Republic, and Grand Turk. The excursions were only 2-3 hours. Thankfully most were on air-conditioned buses! Most days it was really hot, so that didn't help any. However, on Curacao, it was around 80, which would have made me pass out as soon as I stepped outside. Apparently they have these constant cool (like really cool) breezes year-round except September. I never thought there'd be a place on earth that was both warm and I didn't pass out. As an added bonus, one of the local products from this island is a cooling spray. I bought tons. I can't seem to find any other like it in the U.S. that works as well :/

It was like me and Curacao were meant to be <3

The crash is same for me. The day after a busy day I'm not quite as functional. I'm sort of like a tired person running on coffee and my family and friends say I don't sound right. The day after that I don't want to leave my apartment.

[Becia]

Sounds like an amazing trip and sights!

[sue1234]

Wow, Curacao sounds amazing! Warm, but not hot, and cooling breeze.

I have a question. Were you able to control the temp of your room on the cruise? I'd love to go on a short cruise, but scared I will be uncomfortable if I can't adjust the temp to my comfort-zone.

[KaoruZ]

There was no temperature control, but I was in one of the smallest cabins. I tried to see if there was in the bigger cabins, but I'm not sure.

[Nymph]

Hi Caoruz,

I just wanted to say that I understand. My parents are actually understanding and great. It's school and work that feel like all or nothing for me. There is just not the flexibility. If I want to establish my career, I have to go full on, or so it seems. There are very hard decisions to make and I go back and forth all the time. Ultimately, I will not be able to do anything if my body says no. That's just a fact. I will have to come to a compromise position with my limitations.

It sounds like you have already made some progress in that area. Digital art is a fantastic skill to have. Think about your future and what will work for you in the long term.

(I should listen to my own advice!)

Best,

Nicole