Pre And Post Pots Self...random Musings... :)

[cmreber]

I wasn’t really sure where to post this, because it’s kind of just me rambling, but I thought I would put it out there, just in case anyone here has felt the same.

I have had POTS now for almost 2 and ½ years, and, like everyone on here I’m sure, things have definitely changed for me. The hard part for me has been the fact that I was 25 when this happened, and I feel like I was kind of robbed of the past couple of years (I seriously spent the first 6-8 months basically sleeping! lol).

I’m not quite sure what brought this on, but I was just kind of having one of those moments where you suddenly stop to evaluate yourself and your life and it occurred to me that pre-POTS Christine and post-POTS Christine are two very different people. I think I’ve been in a serious rut. And I’m kind of thinking I’m not too crazy about that fact.

So. What to do? Well, the good news is that my POTS has definitely improved from where I used to be. So that definitely helps me get back to some of my pre-POTS activities, etc. But I think it goes beyond that. It isn’t just, oh hey, I can tell my friends I’ll meet them and not flake all the time now, or I can actually get the laundry done today. I think there is a mental/emotional component that I have to address. It’s hard to explain, but it’s sort of like, I know that I’m older now than I was a couple of years ago, but…man, it’s like I’m OLDER now. I used to do my hair and make-up, wear fun clothes and fingernail polish to match. Now, I’m lucky if I swipe on some mascara for the day! Before, my friends would suggest something and I wouldn’t think twice about saying yes, no matter how random or spur of the moment or crazy; now, I think, gee, I don’t know, how will I FEEL? I miss my old self. And I think that there are things I can do and choices I can make to try to get her back. Sure, I can’t be spontaneous and fun all the time, because, let’s face it, I can’t just stop having POTS. But, I can take the opportunity whenever I have good days to plan out fun outfits, do my hair, go get my nails done, put on some makeup. Go to lunch with a friend. Something. Stop acting like an 80-year-old grandma and more like the 27-year-old I am!

You know what, I gave it a try, and I actually feel better. I looked in the mirror today and almost felt like I transported back a couple years to my 25-year-old, pre-POTS self. Now,of course I realize this might not always be possible, but I think mentally I have trained myself over the past couple of years to just be in permanent “sick mode”, and I honestly don’t think that I am going to emotionally get over this 2-year + slump if I don’t try to get OUT of “sick mode”. So, I’m going to make it my goal this year to try to achieve this. Now, I know that I will have plenty of bad days, and feel awful sometimes and have to flake on people....I can't always be the "Yes Girl" anymore...and that’s okay. I can accept that I have limitations. But I’m also going to take advantage of every good day I have and get ready and dressed up when I can, feel good about myself, and try to feel like I’m my age again! Hopefully I can keep this up, at least to some degree. Crossing my fingers and hoping for the best!

(And sorry if this was lengthy and totally random lol )

[tpapik]

I absolutly LOVE it! thanks for sharing. im 26 diagnosed in november , and had it it november so quick diagnose for me and hope to turn from negetivity to PURE Positive. I think thats half the battle- i am determined NOT to degrade anymore than I am - and GET BETTER@

[Mydoggielovesme2]

YOU GO GIRL !!! If you are a point in your life/health and you are able to do more, count your blessings, and run with it.

Best of luck.

[roxie]

I SO hear you. I'm at that point too and I just don't know what to do or how to appraoch it. I'm 27 like you but I got sick when I was 12. And it's controlled my life. I've missed out on everything. I try to put the past behind me but I hate thinking about the future. I hate thinking about my age and I just wonder what am I going to do? How am I going to any assemblage of a real life? My parents have been so supportive but its like they don't understand why I want or why I try to change things. They don't grasp my need for independence or why I'm not completely content where I am because of how good they are to me. Besides the fact that I feel terrible all the time I feel completely trapped and my mom wants to do everything for me, always telling me not to push and just rest. I'm not getting anywhere and I don't know what to do, I don't know how to assert myself wihtout offending them. It's made worse because like you said we can't be yes people all the time. And I'm so torn with how hard how to push and just everything. I want a change, I need a change. How? I don't know.

Feel free to pm me if you need to vent.

[cmreber]

tpapik, hang in there and I hope things get better for you! I really do believe so much of what we go through in life is attitude. I used to work at the hospital and I have seen countless patients, super sick, many of them terminal with cancer, etc., and they STILL kept their positive attitudes and smiles. Like you, I am very determined to keep a positive outlook because I think to lose that would be to lose myself. Besides, our attitude is about the ONLY thing we can control with this thing! lol! I actually just came across this wonderful quote: "There is a saying in Tibetan, 'Tragedy should be utilized as a source of strength.' No matter what sort of difficulties, how painful experience is, if we lose our hope, that's our real disaster.”― Dalai Lama XIV

Mydoggielovesme2, thanks!!! I am trying. It's not always easy, but I'll be doing my best! Lots of luck to you as well on this long and difficult journey we call Dysautonomia!

i hate bananas, I can't even imagine having this at age 12! For that, I do count myself very lucky because I can't imagine having to go through my high school and college years with this! It sounds like you have had a lot to deal with, physically and emotionally. I was fortunate in the fact that I was an adult when this all happened, so I didn't have to figure out the whole "overprotective parents" thing. Plus, I was raised by my grandma who had her own health stuff going on (I recently lost her end of this last year), so that wasn't really a factor anyway. I do understand, though, because sometimes I feel like my husband can be a little on the overprotective side. I mean, hey, I am SO beyond thankful for that, especially having read some posts on here about unsupportive spouses and family members! ... but, sometimes it can be a bit much. Like, hey, I've got this, don't worry so much about me! lol Like, we're going to be getting a hot tub soon and he made sure to let me know I am not allowed in it alone because if I pass out I'll surely drown lol. Gotta love him for caring so much though ;P It's such a hard balance sometimes, fighting between what we want and what our bodies will allow, and then what we feel we can do and what others feel we should (or shouldn't) be doing! That has probably been the most frustrating part for me. I will definitely feel free to PM you and you can also always do the same!

Thank you so much for the responses everyone, and hope we all have a good rest of the week!!!

[NaomiSpellman]

I feel in some ways like I’ve split in two since becoming overwhelmed with symptoms. There is the one who stopped caring, a shell going through the motions, the one that thinks about death (this is the bipolar speaking). Then there is the one going through other motions, unfamiliar motions, connected to survival. Trying to survive with this mess. I spent 4 decades wanting to believe I was healthy and that I could do anything. Now I know better. I don’t know who I am anymore.

Sometimes I wish everything would stop. Other times I find myself contemplating getting back on the train. But not the same one I got off.

It is comforting to read these posts and recognize your own struggles in others' lives. I feel less alone in this endeavor. Thank you! And yes definitely little things like nail polish and caring for yourself (as if you had somewhere to go) can help raise your spirits.

Naomi

[cmreber]

Naomi, part of what I love about this forum is how much we can all relate to each other. This is the place where I feel the least alone, because we all actually understand. I know that there are a lot of people in my life (those I've let in at all, when it comes to my health issues) and they try their best to be there for me...but sometimes I feel like they don't quite get it. And, seriously, I don't blame them. If I was not walking in my own shoes, I don't think I would understand it either! It is so difficult because I think many of us do feel split in two. It has been one of my biggest struggles, so know you are not alone in that! I think many of us also feel like giving up sometimes. I know there have definitely been some dark days for me along this journey...and sometimes I can't help but think, someone let me off this ride! The most important thing to remember, though, is just how much meaning we can still find in our lives, even now. We can be grateful for the good days and not take feeling good (or mildly decent, in most of our cases) for granted. I think one of the most positive outcomes for me was finding out who truly cares about me, and which friends/family members didn't matter that much in the first place. And the ones who have stood by my side now mean more to me than ever before.