The "now What" Feeling.

[coloredblood]

So I've been DXed for 2 years now. 2 years ago I had to leave college, my apartment, my friends, and my life in Penn. and move back in with my parents in Georgia. I have been to Vandy and I have a good regimen to keep my symptoms under control. I haven't been really bad in about 3 months now. I still have good days and bad, but the bad days aren't as bad as they were. I know I can't go back to my school in Pittsburgh. I can't be that far away form my family who takes care of me. I also think I won't be able to go back to acting, which was my major. I can't live that lifestyle. So I guess my question is... How do you figure out how to move forward? I need to know what to do with the tremendous sadness and grief that I hold for the life that I feel I've lost. What do you do to maintain your pride and dignity? What makes you feel like you are still you at the end of the day? I just turned 22 and I feel like my life is worthless. I know it's not, but I need help to figure out how to make something of myself. I want to be proud of myself again.

~Nancy

[firewatcher]

I don't know of any "Arts" schools in Atlanta other than SCAD and that is visual arts only. Did you have a minor or other interests?

We all get trapped in the myth of our self-worth lies in what we do, not who we are. You have value, just as you are! To have continued on and pushed for a dx is something to be proud of. I guess you need to decide where you go from here, life-wise: do you want to try a job, continue with your degree, just feel better than you do now?... Acceptance is a hard thing, and it comes in stages.

I am in the "area" so PM me if you want to talk

Jennifer

[Guest tearose]

Dear one,

You move forward because you must. Your life is much more than these challenges. You are going to find your way through this and will find something to do that brings you joy and love and joy love to others. You are looking inward right now and this is okay. When you get quiet with yourself and find that inner strength, you will find the real answers come to you from a deep inside place. Trust yourself. Allow the grief of what you perceive as loss right now become the opening, the space to allow for something new and greater than you ever imagined.

My mantra at these deep introspective times is "I cannot control what happens to me, I can only control how I respond".

First, get quiet and allow for inner healing. Then, when you are ready, begin to return to the outside world again. Take small steps. Look into online classes, ask for assistance, change your goals....all these alternatives will reveal themselves to you as you allow them to.

Trust that you are here for a purpose that is still unfolding.

with love and best regards,

tearose

[Janey]

I can relate to you completely. I am mid-twenties, and up until a few months ago, had a growing and successful career in TV production. I've taken "time-out" from the industry to "feel better", but in the back of my mind I know that, that kind of lifestyle is not going to work with me being so ill. And I also have not reconciled the fact that I feel "I am what i do." At the moment I do nothing, so I am nothing. If I'd been 40 or 50 and got Dysautonomia and had to retire from the world after a glittering career, it would be kind of glamorously tragic - but this - mid twenties - I feel like I haven't even started, haven't even tried. I find it so sad and depressing. Also I never get to have that feeling of being independent; having my own car, my own house, my own life. My day to day life is so tied up with who will drive me where, who will make me dinner, which friends can be bothered to come round to my house. I have lost all my autonomy. People say you learn to live with it and do more as it goes on and I sure hope that's true.

I don't mean to be depressing, just to let you know I'm in the same boat and I understand the feeling of not being able to realise your full potential. Some days I decide that I'd rather kill myself working and doing what I love rather than spending every day laying on the sofa in my front room wondering what could have been.

Janey

[potsgirl]

Just a note from someone who's a little older....I raised my son as a single parent, and finally went back to school full-time to finish my degree at the same time he started on his - same school, even! I went on to get my master's degree in 2003 in anthropology/archaeology, which was my passion. I moved to Arizona, where I worked as an arch for an Indian tribe along the Colorado River, which I loved. I then moved to Tucson to be with my boyfriend and take an arch 'desk job' with the county. I had just been diagnosed with heart disease, got a pacemaker, and worked for the county 10 months (my dream job) before I got hit with POTS. I had envisioned working there for the next 20 or so years, with great retirement benefits, etc. I had to leave and have been unable to work for the past 2 years.

I don't know if it gets easier if you're older - it sure didn't feel that way to me. I loved my profession and job, I loved my life. I think most of us go through a major grieving period when we struggle to redefine ourselves when we can't work. I'm like you - at the time, it's who I WAS. But you can't let your profession define you - there are so many other aspects to a person, and other things will now open up to you once you go through your grief and come out the other side. Also - there are certainly POTS/dysautonomia sufferers who do get better! Don't be too quick to give up your careers....

You have all my support, and you'll find you have more strength than you ever thought possible.

Cheers,

Jana

[erik]

As for grieving that is a very adept description. I don't know how seriously it is taken within the world of illness effects, I get the feeling that ball is dropped during treatment. It is a real issue.

If one wished to face this head on, with counseling and such, one may have to "borrow" treatment concepts from areas of "abuse" (psychological, sexual, etc.) where as near as I can tell the key principle is to eventually face/experience the pain directly and fully. It is described as a grieving process (though in essence you are grieving for yourself, not another... or as I think of it, for another version of yourself). It is something that seems futile, but the reasoning (and there is evidence of this) is that not doing so can be a temporary benefit/adaptation but a long term problem... so one is wise to at least eventually confront that issue head on.

Perhaps a creative counselor can adapt some "trauma" treatments to the situation and be of assistance. I know for diseases such as cancer, this aspect of illness has gained favor. Counseling for chronic illness may or may not really tackle this head on. In essence, that is what one is dealing with although it lacks the "flair" of more overt traumas. It would be nice if some general advice about philosophy and attitude could fix things... those are *always* good to contemplate and apply, attitude is key... however, this stuff runs very deep and the sadness is very real and serious.

For me, I can talk about myself in very unfeeling terms... then if I imagine some of my circumstances happening to someone else, even briefly or shallowly, I will suddenly cry. So there is something weird there... one must guard oneself to remain function but it builds a "dissociation" that is not healthy overall (a separation of self). Might read up on dissociative disorders... the milder ones, not the multiple personality stuff My personal advice is to address the pain at least partially on those terms, and mostly with a good healthy attitude and if you can, some personal and religious fortitude. You are actually early in the process and will benefit and recover in this sense quite well.

[erikainorlando]

YES!! I know what you mean. AND I am much older than you (46) but it doesn't feel that much easier here either. I had already fought back from the dead in 2001 after being on life support for months etc. Now I am fighting again. I am gettin' tired of coming from behind if you know what I mean!!

But then we try...we adapt...we change and grow and realize that everyone has limitations. Everyone has to redefine frm time to time. i know this is really stupid and may not help you but when I am so frustrated because I can't do my career anymore etc. (after doing a lot of schooling to get there)..I try to think of what I can do. I am trying to do a little towards my masters training..although I may never use it...it sure helps me mentally. I think of the folks who have had their faces dis-sheveld from an auto accident or those who find they have cancer and won't be here next spring. It sounds very polly-anna and I am not for sure but it can help me feel better. Otherwise I get so frustrated...feel like a victem and after long enough that deosn't really help.

I think of a friend of mine who had Guillain Barre like me...he will live in a nursing home for the rest of his life as he still is so paraylzed. When I first got sick AGAIN I was so pissed that I was sick and compromised that I didn't care how sick anyone else was...JUST SO MAD .. but Iam trying to adjust...it is a process. Kudos to you for thinmking of what you can do...the happy person adjusts and bends...

Good topic...good luck

Erika

[coloredblood]

Thank you all for your ideas, reflections and stories. I've been thinking a lot today and I think a Key for me to move forward is to give myself permission to be sad. So for now I think I;m just going to be sad for a little while. I can't tell you how much it means to me that you KNOW how I feel. I'm not alone and that's comforting. Thanks.

~nancy

[firewatcher]

Thank you all for your ideas, reflections and stories. I've been thinking a lot today and I think a Key for me to move forward is to give myself permission to be sad. So for now I think I;m just going to be sad for a little while. I can't tell you how much it means to me that you KNOW how I feel. I'm not alone and that's comforting. Thanks.

~nancy

When "all this" first started for me, some really wonky things were going on. My GP doc assured me that they were all psychiatric, so I went to the psychiatrist and HE said they were obviously physical. I got really mad! Another doc said, "well, that's not good..." actually it was; it got me mentally ready and emotionally "armed" to find more helpful doctors. No emotion is bad, it is only how you respond to it. Sadness and anger are different ways we work through this, be sad just don't get stuck there! You still have so much life to live, even if your physical life is limited!

Your gift is to touch others emotionally through your acting; you will find a way to use this!

(((((((((((((((hugs)))))))))))))))and healing with a shovel-ful of support!

[helen.t]

Hi there,

I completely identify with how you're feeling as well as everyone else here on the forum. It will be the end or likely the end of your previous life as you've known it to be and it is only natural for you to feel grief. However it is important not to let it drag you down into depression as that will only compound your illness and make you a hundred times worse than you are now. The best way I got round this was by taking good advice from a counselor friend who told me to focus on the small things that I coulddo rather than dwell on the things I can't[/i] do any longer. This was really helpful to me as it opened up new doors for me and my life has went a diffrent path to the one I was expecting. My life has also been enriched by the new people I have met because of this illness- by their kindness- and also I have been able to support and identify with other people who are and have been struggling with chronic ill health. This has given me a great sense of purpose as in this day and age when so many people out there are usually too busy and stressed to have time to listen to those in need. I struggled for many many years with no understanding or proper diagnosis of what was wrong with me and in between it all I had 3 children and various part-time jobs. It was really hard to keep going and I was continually having to keep crawling back up after long months of illness. Now I am helping look after my little grandson with my husbands help which I never thought I would be able to do. I find it really hard but rewarding and not sure how it'l go as he gets on his feet but I just take one day at a time!....

It is really hard when you are young and ambitious but don't let you're illness stand in the way of your ambition. You may have to tailor it realistically to your needs and there may be a different plan for your life but there will be a plan! I do hope and pray that you will make the most of what and who you are because you are worth it and will have a lot to give!! Hugs from Helen

[Stace915]

Hi Nancy,

I think everyone who has responded to the post so far has said it right, unfortunately we have all felt that way. I am 28 (29 next week, yikes!) but I was 24 when I was diagnosed. I was living in NY, working for a magazine...pretty fresh out of college and things were going well. I was thinking about going back to grad school and hoped to get to Europe in the next few years and then one day and boom, it seemed like it was all over. I was angry and confused and I agree that in a way it is like grieving. I have been through all of the emotions, from why me, this isn't fair; to I would rather be dead than feel this way and have to relay on other people; to being thankful that I do not have a disease such as cancer... and believe me in the last almost 5 years I have revisited each of those emotions MANY times. I don't understand how there are people out there who suffer with this illness and say they never felt depressed, or wondered what was next and say that they were just happy it wasn't worse. Maybe I am not that strong who knows but what you're feeling is normal.

I have improved a million percent since I first got sick but I still am far from "normal". It took a while but I was finally able to find a job still doing what I love to do but that offers me the flexibility to take a week off at a time if need be and I can't get out of bed, and to work from home if I can't stand that day but feel better laying down etc. Try to be patient and know that everyone on this site is always here to listen and offer advice and has been a life saver to SO many of us!!

Good luck and keep your head up!!

[rymac]

Nancy,

You should grieve for the life you thought you would have but remember there are no guarantees in life even if you are healthy. You are not defined by your career. Your friends are your friends regardless of what job they have. If someone else defines you by your career they are not your friend. My life has not turned out as I expected it would. I'm trying to change my life at age 38 and it has not been easy. I hope you find happiness in something even if it's not acting. Learn to take care of yourself and ask for help when you need it.

Take care

[Csmith3]

I think the answers become clearer with time once you find a level at which you can operate and try a few things to see what works for you. It may be that you have to sacrifice your dream career to have a workable lifestyle. But so many people find this is a dilemma, whether it is health, family or something else unexpected that gets in the way of the original career plan. Equally, new opportunities arise in areas that you least expect and these can end up being more fulfilling than your original plans.

I have posted this link before, but thought it was worth posting again in case anyone hadn't seen it. I like the sense of logic applied to the complex emotions brought about by chronic illness and it gives me some comfort.

http://www.alpineguild.com/COPING%20WITH%2...%20ILLNESS.html

Best wishes

[mountain girl]

I think the answers become clearer with time once you find a level at which you can operate and try a few things to see what works for you. It may be that you have to sacrifice your dream career to have a workable lifestyle. But so many people find this is a dilemma, whether it is health, family or something else unexpected that gets in the way of the original career plan. Equally, new opportunities arise in areas that you least expect and these can end up being more fulfilling than your original plans.

I have posted this link before, but thought it was worth posting again in case anyone hadn't seen it. I like the sense of logic applied to the complex emotions brought about by chronic illness and it gives me some comfort.

http://www.alpineguild.com/COPING%20WITH%2...%20ILLNESS.html

Best wishesI wish I had seen this earlier, but I am glad to have seen it now. I felt like I was going through stages and finally ending with acceptance, but as the article states, sometimes you repeat a step or stage and go in and out of the sadness for our loss, be it working, or self reliance, etc. Very interesting.