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Not Letting It Define You


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Posting in chit chate because I am posting my blog link instead of retying my post.


How do you find ways to not be defined by chronic illness? I think I am pretty well rounded person but gosh it just seems to take over everything sometimes.

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Well said. I am a newly formed blogger myself and have this very idea on my "about me" link..."trying to not let it define me." I am still in search of the elusive answer. Like you said in your blog, "How do you not allow yourself to be defined by something the seeps creepily into every aspect of your life?" Again, I wish I knew the answer. I too have printed out "The Spoon Theory" and as well, my husband had an "ah-ha" moment. He now occassionally asks me, "How's your spoon count today?" I try hard everyday to look on the brighter side and to rely on my faith, although I am not naturally an optimistic person, so this can be a real challenge some days. I guess we have to realize that even though we have a chronic illness that has invaded, and at times stripped us of our livelihoods; this is something we cannot change. We can however change the way we react and respond. I once read a book, Happiness Is A Choice by Dr. Frank Minirth and Dr. Paul Meier (it's a book about the symptoms, causes and cures of depression and I read it way before I was dx), however after reading it, I realized that happiness is a choice. Not only is it a choice, but it is MY choice.

I've liked what I've read so far on your blog and am going to continue to follow it. Keep on keeping on :)

As I always like to say: At times we might feel helpless, but we should never be hopeless.

Blessings to you!

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Apparently my internet connection crashed while I was in the middle of posting the above response so it got truncated..... Sorry! Will try to recall what all I wrote when my brain is clearer.

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  • 3 months later...

I love your post. I was just having similar thoughts. I feel it's incredibly important to remember that we are real people not just diseases.

I often feel like POTS (and autoimmune issues) have stolen my identity. Before I got sick, I use to run, work, and sleep. My life revolved around the two. I fought to let work not overcrowd my running. Now I no longer work and can barely workout. Who am I now? I spent years designing but can no longer put in the long hours and am unemployed. I identify with the running crowds, but I can barely participate and definitely not race. Can I still call myself a designer? A runner?

I can accept that my life won't be the same, but sometimes I wonder what I have become. I am more than my disease, but how do I define myself? Perhaps it doesn't need definition; perhaps it's just our nature to categorize, so we can understand.

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Lel, I too have lost much of what I felt defined me. I often feel like I am not "whole" or pulling my weight.

I am trying to find a new "definition" of me, and some new goals or new things to add to my life. This dumb illness/health problem has over taken my life and my families life for way too long. I do not want to be thought of as the "sick mom/wife/sister/" or the "hypochondriac mom/wife/sister" I want them to think of me in some positive light, but I think first I have to start thinking about myself that way. But I know I will never be that person that they say "oh, she was always so happy, never asked why this happened to her, she found blessings in her illness" I am not that person, and never will be. But I will try not to be the bitter complaining person also.

I think its that balance of not giving up all of our old self and finding our new self.

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Joann, I think it's precisely the "finding our new self" part that I'm currently struggling with. Being knocked out with sickness gives you time to reflect on the "old self" figuring out which parts you should part, must part, and want to part with.

I am beginning to think that the always so happy chronically ill person doesn't exist -- that he/she is a simplified version of a much more complex person. Maybe he/she is always happy in the public environment, but such a big life shift seems to inevitably require some type of internal quest for acceptance. I use to feel guilty that I wasn't part of that always so happy despite her illness crowd. So perhaps this explanation is a way for me to relinquish that guilt. But I think I ultimately, aren't we all more complex than always and never?

How have you been able to explore new goals and things? Thanks for your post!

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Well, one of my problems is trying to figure out that fine line of pushing but not pushing too far. I am hoping these upcoming tests will reveal something. I need some kind of starting line. Maybe it is just me but I need a diagnosis. I did finally get a doctor say she would classify it as a type of POTS, but not sure what. But another doctor said may not be POTS, may be another autonomic problem. I need to know. I need to know what it is so I can figure out what to do next. I have tried the exercise route, it doesn't seem to help me. I am walking, but anything active seems to make things worse. I have had several times I begin to feel better and then I go right back to awful.

But in the meantime, I am trying to figure out what I can do, if I can no longer do my job. I am/was a librarian. I was out for eight months and my boss let me come back one day a week, 6 hours, but there are money problems there and so I may get no hours this spring and summer. If my boss retires, I may not be able to have my flexible schedule. So, what can I do from home and make some of the money. Not sure. But I think this summer, I will explore this more. I am wondering if I should stay in the research area, or try something entirely new like a craft, or gosh knows. My daughter is extremely crafty at 12 and is actually selling her things online. So it is possible, but I need to figure out something that I can do well and people would want. I need some type of work, to feel fulfilled.

I do know I need more interaction with people. I never realized but I am a people person, I crave others. When I am around people I am more alive. I don't know if you read the post recently about personality. Well, there are a lot of introverts on this site. I used to be very, very shy and I still can get that way. But over the years, I have gotten over this more, I think because I realized I needed to take charge or things just wouldn't get done. I still do not like confrontation, but I love to be involved and active with others. So, when my health allows it I need to be with others. That is what I am trying to decide, what is the best way to be around others. Trying to think of a way to join a group or volunteer, but in a way where I don't have to worry about letting people down when I can't make it because of health. I am trying to find friends in the area that are home during the week and understand about chronic illness. Most of my old friends are busy living life and it hurts but I understand. But when I am home alone, this crappy thing gets to me, way too much. I wish in a way I was more of an introvert. I used to love to read, but since I have been ill, I actually am not able to do this for long. I feel too guilty doing it, crazy huh? But I feel like I should be more productive and cannot enjoy one of my favorite activities. I enjoy this site, but wish there was a face to face support group in area. When the weather is warmer, I will be able to at least talk to the neighbors.

My daughter plays travel ball and I am actually looking forward to this upcoming season. When I am not in the middle of a bad flare, I go to these tournaments and it is perfect. I get to see my daughter play, and meet all kinds of people. I don't usually have a problem with heat, so all I have to do is walk to the field and then I can sit through a day of games. If I feel like walking I can walk. I feel like everyone else. Most have no idea I am ill. So I will get my people fix. Also,the coach knows I am ill and I have told him, if he needs anything done that can be done at home, like computer work, I can do that.

So, I guess I am working on this new me. I am still having a difficult time letting go of a lot of my old me. And struggling with letting me or others define me by this illness. But you are right, it does make you reflect on your self. Being a type A person in a body that won't cooperate is a challenge, and I am trying to relax some,but I don't think you can change completely. So I guess us Type A people need to figure out a way to be Type A, in a different way?!

My goal right now is to figure out how to still be a great mom, even though I can't do things I want to, find a way to be productive and make some money, find a way to be around people more, and find a doctor that will help me figure out what is going on. Once, I get those things more settled, I would like to become an advocate for invisible illness. I have been thinking about how I would like to do this.

Sorry for the rambling. Obviously, I am in the beginning stages of this journey. Maybe my goal should be to be more concise! LOL

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POTS does change you. I am a parent of a 12 year old boy that has POTS. Our lives have been turned upside down. Before this last school year started, his symptoms got worse and he was not able to attended public school. I quit my full time teaching job so I could stay home and care for him. I started a blog called survivingpots.com. It is our story about how it all started in a boy so young.

Our goal is to get through one day at a time. Through research I have learned that my son will possibly outgrow this strange syndrome. I keep this positive thought with me all the time. It has been a while since my son has had any good days. Since he has had the flu in January, he has not been able to stand up and walk. He has also had a sleep study and we just got those results back. So I have a few things to blog about.

I like reading new blogs. I look forward to reading some others. Thanks for posting this.

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