i am having a really difficult time accepting that i have this disorder and that my life needs to change to accomodate it. i have so many symptoms that i deal with on a daily basis, but on the other hand, i'm mentally in denial that i have a chronic disorder. as many of you know, i have been extremely stressed about moving, getting a full time job, taking care of my health, taking care of my father, and going back to school half-time - all at the same time. every person who wrote back basically told me that this is insane and i need to take some time to figure out my health situation and take one thing at a time. and you are all right, and i know that you are all right.

however, i'm still going to work full time, go back to school, and push myself to fight, fight fight. but i also know that this is a vicious cycle because i will feel worse, then i will fear becoming symptomatic while trying to do all these things, then i will panic, then i will regret taking on everything, and so on.

but i just cannot accept this. i cannot accept that i went from a globe-trotting adventurous, active spirit to this mess. everything i dreamed of and worked so hard for depended on qualities that i don't have anymore. and accepting that means giving up on many of my dreams. i know that i should re-evaluate my life and direction, and i also know that i would probably be perfectly happy pursuing another path. the reasonable part of me knows all this.

but the head-strong and completely stubborn part cannot let go of what i was and who i wanted to be. i am not even close to being like the person who i was a year ago, but i still behave like i am that person. like i'm fooling everyone. it's so ridiculous.

just needed to vent. how did you guys accept this? and when? it has been over a year, and i'm just wondering when i will be able to allow myself to live a lifestyle that allows me to just deal with this.

"Acceptance" has been very (tricky) for me. I have washed through many cycles of accept/deny/anger/sadness. It tends to go with how I'm feeling (physically). Usually, I'm not sick every day. The feelings go with the symptoms. I'm in an "unhealthy" cycle right now and having a hard time recovering from a uro-gyne surgery on Aug. 1st. My dizzy/fatigue symptoms are in full speed. I've been diagnosed since approx 99 and actually, I don't like the rollercoaster of emotions and physical health I've been on. One tries to stay emotionally strong through things like this and it is easier said than done.

There are times when I'm feeling SO WELL - no symptoms - and I think the autonomic disorder has magically disappeared. I start planning all kinds of things and then POOF....reality sets back in...symptoms return....

I'm not sure what the "key" to living with these disorders is. As much as possible, I think we have to take each and every day as it is...try not to "overdo it" and not "underdo it". BALANCE. Even with attempts at balance, we are sometimes surprised by the return of ill-health.

I wish you well. The forum is an excellent resource and place to sort out thoughts/feelings. It has helped me tremendously over the years.....

This message has been edited. Last edited by: DizzyBrunette,

Gracie. . . you don't have to ACCEPT anything. But what you're doing now is NOT working for you. Step back, re-group, formulate a different plan and if that doesn't help, then step back, re-group, and formulate even a different plan!

I don't mean to be blunt, but it appears to me that you're spinning your wheels. Think about it. Has anything changed at all yet? Are you getting ANYWHERE? Make some simple goals and stick to them if for no other reason than for your sanity!

I hope the clonidine works for you. That just may be the answer you're needing. I'm in the process of getting catecholamines checked, as well as other tests, and plan to begin clondidine asap. Good luck!

I haven't accepted it. I guess it's easier to be in denial and ignore the whole thing thinking that in that way it can go away.

I think it may some with time. As we all get used to living with it all. Balance like Dizzy said. Finding how to make the most of your good days and also learning how to deal with the shortcomings of your bad days. We can't have our cake and eat it too sadly enough.

You can hate your life or you can make the most of what you have. But, think of it this way, even with your health problems and limits you have so much more then some people do.

I feel for you. It took me loosing my job, family members, money, my car and everything before I realized I didn't loose God. He is the one that accepts us like we are. Through out the fifteen years that I have struggled I now see a purpose. I have written a book on how to live with dysautonomia. And it will be published later this year. You just have to be yourself, don't fake like I did. BE honest with yourself and your family. I hope this helps.
you are in my thoughts as you struggle to accept it all. Accepting it doesn't mean you are giving up, it just means you are doing the best you can with what you have.

Gracie-

Acceptance of this doesn't mean you have to give up your dreams. You may just need to pursue them a bit differently or not all at one time. I have accepted this but that just enables me to be realistic. I certainly haven't given up hope that it will go away or given up hope that I will still accomplish what I always thought I would. And to be honest, now that I've had this downtime, I'm re-evaluating all I wanted to do anyway.
Whether or not you "accept" this will be part of your journey but you don't want to be in denial. There is something to be said for pushing yourself a bit but you definitely don't want to do that to the point that you are more ill. In the long run, you will only pay the price more.
Hang in there - you'll come to terms with it....
I believe in a way, we have to grieve our old selves and like anyone grieving, I believe there is no right or wrong way -

I don't accept this illness, because honestly I have no choice but to NOT accept it. I don't have the luxury of accepting it. My situation is that I am living off of my Mother. She's now 71 years old and still working full-time and I live in her house again, after over a decade of living a full and independant life on my own in my own home in NYC. When my Mother dies, I have absolutely no one. I'm not married and am not at all close to any of my 3 older siblings (somewhat close to 1 of them, but not enough to expect he would ever financially support me the way Mom has done...not to mention taking me to drs appts, driving me everywhere, etc.) So, acceptance is out of the question. Either I beat this or I will die in a shelter after my Mom eventually passes. I HAVE to get well enough to be able to work a full day again. Simple as that. There is no other way. There's nobody left to support me after my Mom, to drive me to appts, to generally look after me with this illness. So for me, battling this and never ever accepting it is really the only answer. My survival literally depends on it.

Now, as far as letting the disorder change my life....well, that got to the point where it was no longer my choice. I was living and working in NYC, doing an off-Bway show, at the time this struck. I waited as long as my body would allow before I had to give in and move back to the DC area to once again live with my Mother and stop working. It gets to the point where "choosing" to give up things simply doesn't factor in....you stop doing things like work or school or other pursuits because you LITERALLY cannot do them. At least that's how it was for me. I didn't give-in to Dysautonomia, it simply claimed me. There's no such thing as pushing myself; my body will not do certain things and that's that.

The fact that you can still do these things like work and school is a good sign, I think. I hate to talk this way, but the Dysautonomia is gonna let you know when you have to stop. Right now you're still "choosing". When the Dys starts to choose for you, like it eventually did for me, that's when you'll really know things have changed. Let's hope that for you, it never ever gets to that point!

gillian

thank you all for your very interesting responses. i just feel at such a loss in figuring out what the dys will and won't allow me to do. when i get out and work (which yes, i am so thankful i can still do), it brings on a host of symptoms that i find intolerable. it seems like everyday that i come home from work i swear i'm not going to work anymore. but then, when i have a day off, like today, and i rest and take care of myself, it brings on another whole host of different symptoms that are equally as bad. so then i swear i can't handle taking even a day off as not getting outside and walking around seems to make me feel just as bad as getting outside and walking.

does this make sense? whoever said that my choices so far haven't gotten my anywhere is right. i have made no progress. i still don't even know what i have. i still feel crappy almost every day. i just wish i understood what would make me feel better and what doesn't. different lifestyles seems to trigger different symptoms.

you are all very supportive. i appreciate your feedback. it gives me a lot to think about, and i truly do.

I don't know that I'll ever be able to accept this junk. I just try to live with it. Some days are really productive days (or at least I think they are) and some are 'write-offs.'

Yesterday I managed to clean the bathroom, shower, wash my hair, do some laundry, do some pilates on the floor, cook chicken soup and some bickies (cookies)-- but burnt them. That I was able to achieve so much felt great.

I woke a number of times during the night feeling awful and today I have my grandson comming over after lunch for me to mind and I feel like I'm going to die from exhaustion. Every bone in my body is aching as well as my head.

And even while typing this sitting semi-reclined I've had to stop and close my eyes and rest.

This is a bloody hard illness to accept. The damn thing won't stay still long enough for me to 'see' it clearly and get a handle on it. I get so frustrated and depressed some days. How can I accept this? I just have to continue to muddle through it, I guess. Deal with what happens when it happens.

GracieTiger---
I can't say I've ever once "accepted" this.

That's what drove me to research. I knew I couldn't accept this illness, so if i knew I couldn't do that, then I'd just have to fix it myself gosh darnit.

I don't see any reason I shouldn't be living my life to the fullest and I'll be dammned if I'm going to accept anything less. grrrrr.... lol

quote:

Originally posted by GracieTiger:
thank you all for your very interesting responses. i just feel at such a loss in figuring out what the dys will and won't allow me to do. when i get out and work (which yes, i am so thankful i can still do), it brings on a host of symptoms that i find intolerable. it seems like everyday that i come home from work i swear i'm not going to work anymore. but then, when i have a day off, like today, and i rest and take care of myself, it brings on another whole host of different symptoms that are equally as bad. so then i swear i can't handle taking even a day off as not getting outside and walking around seems to make me feel just as bad as getting outside and walking.

does this make sense? whoever said that my choices so far haven't gotten my anywhere is right. i have made no progress. i still don't even know what i have. i still feel crappy almost every day. i just wish i understood what would make me feel better and what doesn't. different lifestyles seems to trigger different symptoms.

you are all very supportive. i appreciate your feedback. it gives me a lot to think about, and i truly do.

Gracie,
You explain the dilemma so many of us have...trying to find what works/what doesn't..because EVERY darn day seems to be different. I try to "balance" - mainly by not OVERdoing anything, but still, there seems no predictability to the symptoms.

quote:

Originally posted by DizzyBrunette:

quote:

Originally posted by GracieTiger:
thank you all for your very interesting responses. i just feel at such a loss in figuring out what the dys will and won't allow me to do..

Gracie,
EVERY darn day seems to be different. I try to "balance" - mainly by not OVERdoing anything, but still, there seems no predictability to the symptoms.

Hi,

One day I can be sitting up at the table eating a light meal and interacting with whomever I'm eating with. Next day I can suddenly 'shut down' -- as in I'm not able to filter out background noise so can't hear whomever I'm eating with and what they are saying, my vision will grey out, I'll have to slide off my chair onto the floor and just lie there on my side until someone helps me up and to bed or, if out, home.

I've just got to hope that each time I eat a meal with someone (or all the other things I do daily, for this is just an example)that 'this time' it is going to have a good outcome not a negative one.

i don't know if i've learned to accept it or am learning to manage it. at first, i was so frustrated i couldn't get my house spotless clean like i used to. now, i don't try and just manage it one day at a time. my bf thinks i've learned not to waste energy and to conserve it for the most important thing - my job (sad, but true because it pays the bills).

i also have many ups and downs and when i'm feeling good physically, i feel good mentally. but on bad days, i still can fall apart.

i just keep trying to measure against my worse time and not 'before' because it is too demoralizing to measure my current abilities against what i used to be able to do. if i measure against my worse time, then i see the improvements and the light at the end of the tunnel.

good question. If u find our let me know. But hey, there a Jews who survived the holocaust and had nothing left, there was Christopher Reeve whom I Knew and he became a more compassionate man, there Michael J. Fox, my dad who has cancer, the mess in the Middle East, and all over the world. At least I am fairly clean and dry. ANd, of all people, the peaceful tibetans are struggling with the whole basis of Buddhism for their preservation. I have no answer. I do find mindfulness meditation (now popular in psych and based on Buddhism) to be very comforting. Tomorrow, I may get some test result news that will be bad, bad, bad news. I had a painful chronic illness as a child through adulthood. I laugh and say, how did I get over that one? I got a worse disease. WHat can we do but put one foot in front of the other whenever we can, This is my new life. This is your new life. In some ways, it made me stop dead in my tracks and notice the moment. It changed the entire way I perceive the world. That is sort of the hidden gift, but I am ready for the POTS to go away. I have had enough. We all have bad days, some of us one after the other. Right now, I have a big bulging bruise on the side of my eyebrow from my last tumble. Guess, I wasn't putting any feet in front of the other. But it is my life now, and it is yours too. I try to stop and notice and show empathy for anyone in a state of trauma, anguish, or despair. I heard that POTS people can be hard to be around. I think we can be the nicest people on earth. I am not religious, but I have had many unbelievable spiritual connections since this happened. Peace starts within and radiates to just one other person. U reach out. You listen, and suddenly that moment is so precious and we know why so many choose misery and harm to others. We didn't choose this, but we have the will to write a new chapter tomorrow. THis is me, and this is you. We are all connected. Now that I sounded so deep, I guess I will go cry and think the worst about the test results I await. Totally doesn't even exist in this moment, and may not later. Live for today as best as you can, and know that in everything in life there is both good and bad. People who have never suffered don't have your wisdom. We all suffer our own personal tragedies at some point, and no one gets out alive or free from suffering. THat is the human condition, and we are just humans. So, give yourself a break and feel what you feel when u need to. We can do our best, but some things cannot be fixed and some people choose the wrong path. So let go, and just be kind to yourself and others. You might like reading Pema Chodron (anything by her) or some others that help me, but I have a lot of psychological work to do on a daily basis. REmember, stress makes this worse, so learn to communicate your boundaries, learn to have fun, learn to know when you cannot change something, but it is possible to leave it behind. UNfortunately, POTS consumes every aspect of our lives and we cannot leave it behind, try as we might. I feel for you.