issie Posted March 20, 2012 Report Share Posted March 20, 2012 POTS and Determination! What it's like for someone whose pretty much had it their entire life.I'm one of those that's had POTS all my life. My remembrance of my first problems was when I was 8 years old and now I'm 52. When I was younger, like any child you want to play and have fun and just be a kid. I tried to do all those things and did what I could - but, I never could keep up with the other kids. I would have near black outs if I ran too much, couldn't catch my breath, was dizzy and fainty and all the things that POTS is. But, when you're a really young kid you keep going and keep trying to do what the other kids are doing. I had many other health issues that started in my 20's but still had a pretty full enjoyable life - despite myself. The 30's were not so very good at all. And the 40's waxed and waned in severity and now I'm into 50 and still the same sort of thing. Always there, but different amounts of intensities and symptoms. I've always been one to be determined to live life and not let it pass me by and never take any moment or opportunity forgranted. I've traveled a whole lot, I've seen almost all of the United States and also a few other countries. I enjoy people and do a little public speaking (although that will nearly put me over the edge). I've had a very good and full life - despite having a very complicated and complex case of POTS with genetic and autoimmune components. But, even having a "mostly" good attitude - I have periods where I want to give up. I think I can't do it any more and when I'm in a down - I think I'll never come back out and feel very desperate. (You guys may not realize it - but, I've been that way for the past 6 weeks.)I know, in my case I will never get over this. I just want to find a better "band-aid" to continue to have the very best quality of life that I can and to continue to be able to do what I want to do with the rest of whatever life I have left. In my mind I'm still 18, my body just doesn't know I'm still young. LOL I still want to do the things that I did when I was younger - go dancing and sing and travel and meet new people, make new friends etc. All that is my desire and I'm not going to let POTS or my age stop me from doing those things. Granted, I'll have to find ways to do them - but, I will do them.Since I've HAD to cope with this all my life - I think you learn better how to do it. For those whose dysautonomia comes on later and it's not something you've had to deal with - I think it's absolutely harder for you. If a really healthy person gets sick and they are used to being very well - they get a whole lot sicker than the average person - both physically and emotionally and they are usually more difficult patients - because, they are really not happy and are mad about being sick. But, unfortunately the way I am is what I've always known - it's not new to me - it is MY normal. Sad, but true. But, despite it I've had a very enjoyable, productive life and I hope that when I'm ready to take my last breath - I'll look back on life and not have any regrets of things I haven't done or words I haven't spoken to people who mean so much to me in my "world". (((((((HUGS)))))))) to all of you!Issie Quote Link to comment Share on other sites More sharing options...
futurehope Posted March 20, 2012 Report Share Posted March 20, 2012 I understand you. I have this disabling inability to adjust to gravity for which I'm always searching for answers.I have bad days. I have good days. For me attitude is everything. I tend not to throw pity parties for myself:it's a waste of energy.My attitude is similar to yours. I intend to live my life to the best of my ability, and I deliberately work to prevent my bodily handicap from taking over my spirit and dragging me down into despair.I always say that "Push" is my middle name. I've spent countless hours pushing myself to sit, to stand, to exercise, to go places, to visit.Sometimes it was super difficult. Sometimes it wasn't too bad. I never look at the bad times as permanent. Tomorrow is another day. I don't give up.Without a doubt I intend to use whatever the Lord has given me to live my life to the fullest, and to be grateful to Him for whatever I have, and for whatever I succeed in, for nothing I accomplish comes easily. It has been difficult. But by not giving in, I am rewarded. I appreciate every task I am able to do. I'm grateful for the small things, like surviving a visit to a relative's house for Christmas dinner, like standing in a park and watching my grandchild.POTS may be something I have, but it cannot "have" me, or take my spirit. This is my life, and I intend to live it to the fullest no matter what. I'm not dead yet, so by definition, I am here and I'm striving, always striving. I'm still here, and until I'm six feet under, I won't stop looking for ways to better my condition, and for ways to better enjoy my life.Don't give up. It's not over until it's over. Keep on keepin' on. Many people have health issues. What is your attitude towards your problems? Will you give up and give in, or will you keep pushing? You may never be cured, but your life's story will be written by what you did with what you were given.God's blessings to all. Quote Link to comment Share on other sites More sharing options...
issie Posted March 20, 2012 Author Report Share Posted March 20, 2012 I so agree!Issie Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted March 20, 2012 Report Share Posted March 20, 2012 Hi issie,I had no idea that you've had pots your whole life. Hugs .. I can't imagine how complicated yourlife has been. You've certainly made the most of it tho. I enjoy reading your posts and consider you an inspiration for othersdealing with this. I'm sorry to hear that you're struggling but know that you'll come out of this. It seems that there arealways new treatment options showing up on the web. Hopefully, one of these will pan out for you. Tc .. D Quote Link to comment Share on other sites More sharing options...
roxie Posted March 20, 2012 Report Share Posted March 20, 2012 Issie, it's completely normal to go through times of being bummed.  If you didn't you wouldn't be human! I think the most important thing is acknowledging it and taking steps to work through it even when it's a slow proccess. I look back and see that I had some signs a lot of my life...especially in the 6 months or so before I got majorly sick. I haven't had a normal life. I didn't go to high school or college and things like that but there are other areas of my life that have been very full.The dr who diagnosed me always said I'd grow out of it and to rest.  And I did, I rested when I didn't want to because he told me that's what I needed. I have more perseverance than he's seen. Now, with a new team of dr's  I have better guidance and am seeing how things could've been different.  It's important to learn how to push in a correct way.   I know EDS doesn't go away. Most likely my POtS will never be 100 % gone but I feel a lot more hopeful for the future!  And Issie on the down sort if feelings you've been having I've been struggling with, I've been feeling guilt over how my illness could have been addressed better. I tell myself its not my fault, I listened to my dr, but I still feel guilty. Quote Link to comment Share on other sites More sharing options...
issie Posted March 20, 2012 Author Report Share Posted March 20, 2012 Yeah, us with EDS know we'll always have a degree of dysfunction. I would so hope that science can come up with better solutions for us. You needn't feel guilty over anything - life unfolds as it unfolds. We do the best we can with the information that we have at the time. Knowledge is something we gain with time and sometimes it just takes that time - to figure certain things out. I'm always learning new things and that will hopefully keep your brain function moving on in the right direction. (Although, that's been really bad lately. Bad brain fog. ) But, like you say, research is on the horizon and I have very good friend that tells me that new info is right around the corner. I just hope the corner isn't too far away from where I'm standing. LOL Issie Quote Link to comment Share on other sites More sharing options...
roxie Posted March 20, 2012 Report Share Posted March 20, 2012 Thanks Issie. I'd be excited if new treatments were on the horizon soon. Quote Link to comment Share on other sites More sharing options...
corina Posted March 20, 2012 Report Share Posted March 20, 2012 Thank you for sharing your personal story Issie. I admire your strength and perseverance and the way you help others find answers here at DINET, while you are struggling yourself Like you I can never give up on my life and try to get the best I possibly can for my family and myself. That paid off when I found octreotide being one of my miracle meds. I'm not cured (yet) but so much better. And still learning every day from everything that you and others share here at DINET. Thank you for that!Corina Quote Link to comment Share on other sites More sharing options...
issie Posted March 21, 2012 Author Report Share Posted March 21, 2012 I just felt like maybe if a person whose had POTS their whole life, can feel that it has been a good life - despite having it for life - it may be encouraging to others to not give up.I'm glad that some feel that I can help them. I hope that my life experiences will be of some benefit to others.Issie Quote Link to comment Share on other sites More sharing options...
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