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Letting Go


masumeh
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I wanted to open a sensitive topic on coping. I have realized that letting go of the old me, the pre-POTS me, has really helped me cope with the disease and accept the new me. I mean, I had to stop mourning the loss of certain activities, friends, abilities, and dreams, and start forming new ones, working around the symptoms. I'm wondering, did this psychological process happen to anyone else, especially those who contracted the disease after a period of good health? Or, how do you guys cope? And for those who've had it since birth, what are your coping devices?

I thought this topic might help those who have just developed pots...

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I like the topic. I got my first symptoms after a life of excellent health so it has been hard. I had many things going for me and, bam, it all stopped one day. That was two years ago.

The biggest shock (besides the symptoms) was the difficulty finding a doctor who would believe me and not diagnose anxiety. I am still surprised by medical dismissiveness in the presence of obvious cardiac symptoms. Because of this -- the fact that I feel not just disabled but often a nonperson -- I am not coping as well as I would like.

After two years, I am still trying to get back to life more similar to how it was "in the before-time". I am hopeful. But I find that every reminder of something I am not doing that I used to do (holiday shop, or just sit a long time to write cards, etc.) is frustrating to me.

I look forward to the advice of others.

How did you learn to let go?

OLL

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Learning to let go is a life skill. Some of us are lucky to never really be faced with this until older age. Then again, I feel that being faced with this challenge is such a tremendous growth experience, when faced with it at a younger age. I think with chronic illness, this is exactly the challenge that brings so many of us, rightly so, to counselors...acceptance of our condition and the unknown that lies ahead with it, and letting go of our previous ideas of what life is--as well as the daily activities we can no longer (at this point anyway) do. If you can find a good counselor, it can be helpful.

For me, learning to let go, is a lesson I KEEP learning--and a skill I keep working at.

Katherine

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Hi,

I was bedridden for 3 years and homebound for 6 years. I am only starting to get sort of a life back.

I had to mourn my old self. I was working 18 hours a day, 7 days a week. I was working full time job, going to university, doing volunteer work, very hyperactive. My life stopped overnight (no exageration!). I woke up one morning and was fainting every time I stood up and it was the end of what my life had been.

I know I will never be healthy because my disorder is genetic but I am aiming to go to the limit of my capacity and to the limit of what science can bring me.

My full time job right now is going to doctors and finding better medication. It is a slow process but worthwhile because I am not bedridden all the time now.

I have found new friends who accept me the way I am and doctors who are very devoted to help me.

For me there is a thin line between giving up all hope of improvement and fightning against the wind..

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Hi,

I have been sick for about 3.5 years now. The major thing that I have to get over and know it's a huge issue now is being scared to do things. I just turned down a trip to Costa Rica, that was free for me. My huge concern was that the closest hospital would be 40 minutes away. Pre-POTS I wouldn't have cared how far the closest hospital was, etc.

I have improved somewhat though, I now drive by myself in my car to places and can even go into stores alone...My huge fear was that something was going to happen to me, as crazy as it might sound to some people at times it's still very real to me. I remember not leaving my house alone for a year or two and my family would get soo mad and aggravated with me, I guess it's because they felt like they had to babysit me...

I personally don't know if I'll be back to my old self again, symptom wise my doctor said that I will have waves where I feel horrible, then waves where I'll feel somewhat normal. I got this condition after having a viral infection, but I truely wonder if I had it before then because I remember always feeling fatigue, malaise, etc. during my years at high school...

Very good topic!

Jacquie

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Good topic, masumeh.

Coping isn't always easy. There was a grieving time for me when my POTS first started, and again when it became disabling. But I can cope because of my faith in Christ and knowing that He has a plan and purpose for me in all of this. I've learned to accept POTS, move on, do all I can to improve my quality of life, and enjoy life despite my circumstances.

I'm willing to share more with anyone, just send me a pm.

Rachel

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i also like this topic and i don't believe i have ever even though of asking it. if i had thought of it i have forgotten... but i know i am having a tough time right now. usually i just think positively about everything and i just count my blessings or try to watch a good movie or tv show, or get on the internet so i don't think about it so much. i am left by myself all the time and i really don't like it at all. i have changed so much but i still miss all the things i once WAS able to do. having pots is a loss. it is like a part of did die, but on the same token a new part of me was born.

i am happy... i have a wonderful man that i love very much... he is awesome to me but right now it is a long distance relationship... which is hard... i miss him all the time and i am afraid of losing him because of me being sick... he doesn't make me think that- i just do because it seems "too good to be true" type of thing. so a lot the time i just think about him and what our future could be... i guess you could say i cope by day dreaming a lot.

oh and when i can get out of the house...... I GO FOR IT!!!!!!!!

dionna :(

i forgot to mention... the poem "foot prints in the sand"... i read that a lot. i know God has a purpose for everything and He will never let me go through anything i can not handle.... it kinda makes me feel honored too that He knows i am strong enough to conquer this battle with Him!!! :)

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Interestingly enough, I was hit with this in the spring after I took a "Death and Dying" class the previous fall while I was working on a degree in Social Work.

So, about a year after I took the class I found myself bedridden, unable to watch TV or read or even listen to the radio and somewhere in my fogged brain I realized I was going through the stages of grieving - denial depression, grief.... So I really believe we need to go through a "mourning" process to "get to the other side", then I was able to start rebuilding with what I had to work with.

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Wow. Some really interesting thoughts here. Like Ernie says, I struggle to find a balance between giving up too easily and fighting a battle I can't win. Like Katherine, I am aware that living with chronic illness can teach you a lot about yourself, and I am grateful that I started learning those things at a young age, instead of decades down the road.

I've been somewhat sick all my life, but there was a significant change when I was 19. I have had to re-evaluate my priorities and my self-image pretty substantially, and I find I need to have a flexible idea of where my life is heading. In a way, there was another transition when I got a diagnosis, because until then I thought I might someday get better. Now I know that most likely this will be with me to one extent or another for the rest of my life. For a long time, "plan A" was always to find out what was wrong, get well and get on with my life. I'd still be thrilled if that happened, but I'm not expecting it anymore. Which actually helps me relax, although it's also making me pretty depressed at the moment.

I like the post-illness me. It's been a pretty miserable decade in some ways, but if I hadn't been sick, I wouldn't be who I am now, so I find I can't quite wish it had never happened. It would be like wishing myself out of existence, if that makes sense.

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I can say this has been the hardest thing for me, I find myself not wanting to cope with the POTS, and Lymes, as I find myself thinking other doctors have been wrong, maybe they are wrong, and I will get better.

Deep down I Know this is whats wrong, and that I need to leanr to over come this, and cope with it, but it's very hard. I can say once I kept pushing for better meds, and treatment, I have found I tryied almost everything with little improvment. But the good news is I am out of a wheelchair and having about 5-6 good hours a day, so I am getting there. Even if this is it, its ok.

I can say that I am getting better at the coping by going to theapy and just talking about the things I lost, but I am finding that this "new life" can be better in differnt ways. At least I get to slow down and spend time with Blake, and my husband! :(

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I don't have much strength to post at the moment....but I think this is a great subject to at least think about. I'm still struggling to get a diagnoses though so letting go isn't as easy just yet. I feel I need permission. If that makes sense.

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I have good days and bad days. Most days I feel mad at the world. WHY WHY WHY WHY?????????. Some days I cry, cry, cry. Other days I feel, "I'm going to beat this and not let it get the best of me." Basically, I really feel an emotional wreck with POTS. I even take an SSRI for the vasoconstriction. Some antidepressant, hugh?

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Wonderful topic. I think we are all at varying stages of grievance or acceptance of our illness. I think I am doing both, depending on what day it is and how my symptoms are! :)

I have been ill for only 2.5 years, but I can tell you that my whole personality has changed. Or at least it has brought out a lot of aspects of my personality that I don't like, such as anxiety, being scared of new situations, worrying, trying to be in control of everyone and everything and wondering how I will cope with this when I'm old.

That is one of my primary concerns is how I'll be able to physically and mentally deal with this condition as I age. I don't think my heart can take the tachycardia, arrythmias and adrenaline rushes when I'm say 60 or 70 or so. I'm only 38 now. I think that working at a hospice has openend my eyes quite a bit about death and dying. I've always said I want to live to be 100. We'll see what God has to say about that one! LOL :)

For the most part, I try to live each day and each moment without thinking too far into the future, except for short term goals and dreams -- which are certainly still important. Those goals have changed quite a bit though.

One of the hardest things in coping with this illness is watching my husband have to deal with all of my limitations. They are mild limitations when compared to others I suppose, but nonetheless, I am not the same person he signed on the dotted line for 5 years ago! :)

Oh well, as they say in Latin..."Carpe Diem"

Gena

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My faith in Christ is what sustains me. I know He is the only one who understands me inside and out. I know He loves me more than I can comprehend and that He is always with me. I know He will never leave me or forsake me. Even if I feel useless, I know I cannot earn my way into His graces because He already loves me more than I know.

I can talk to Him whenever and wherever I am and He listens.

I know this life isn't all there is, so I "press toward the mark of the high-calling in Christ Jesus".

What more can I say?

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i also think this is a great topic, too deep a question to answer quickly! yes letting go is so so hard, but a must to just survive and cope, and just accepting what is instead of crying and letting yourself yearn too much for all you cant do or have now, but there is such a fine line between accepting and then not letting yourself become too compliant or losing all will to fight to find something that will make u better, but then again you cant make yourself go crazy trying to find answers to questions that no one has the answers to just yet!! and of course being sick changes you, i too get nervous and scared so easily and my personality has changed in ways i dont like, but i guess we have to be kinder and more compassionate to ourselves instead of beating ourselves up about these inevitable changes, like maybe getting moody or mad quicker. just look at how crazy our bodies are! well i know everyday is a major struggle to just get thru not just physically but mentally, to just keep myself sane and try not to let the wide range of volatile emotions totally take over my life and impact those i love around me, but i know i do feel guilty often, boy, guilt can just about kill u! guilt for depressing family members when you keep telling them how bad u feel all day, and guilt for maybe snapping at them, or expecting too much from them, i hope i added a little something meaningful to this discussion, i know that just living with this uncertainly about when or if you will ever feel better or have any life even close to what you once had is so so hard to deal with, just wondering if you are expecting too much to get your complete former life and wishing for things that will never be. but then you also need to keep some hope too right?? i think i hope i didnt just confuse everyone with my comments!

radha

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Really great replies... It's always so interesting, the similarities and the differences between ppl's internal dynamics....

I want to kind of summerize so far... people find coping strength in:

-letting go

-fighting

-crying and anger cycles

-faith and religion

-appreciating new qualities

-hope for improvement

-love and relationships

-dreaming, fantasizing

-distracting activities (i.e. internet, TV)

-therapy and talking about it

-short-term goals

-flexibility

-new, integrated self-concept

am I missing anything? It's all really insightful. I'm kind of seeing a process, like

-shock (twilight zone of confusion about symptoms, doubting one's self), then

-denial (unrealistic hope for a quick cure, the plan to get well and move on), then

-depression (giving up that hope and downing the future), then

-anxiety (feeling insecure and vulnerable, always on the alert for the next emergency), then

-flexibility (learning to let go, without anxious "if"s or depressed "but"s, setting realistic goals), then

-appreciation (seeing how new skills and personality traits have developed along the way, acceptance of the new self).

What do y'all think? Does it seem to reflect your experience over the years since onset? I think the first 6mnths is twilight zone, next six months to a year is denial, next year is depression (maybe that starts from the beginning, actually), then third year is anxiety, fourth year is coasting and coping, fifth year is a fully integrated self-concept (perhaps not totally free of regret or frets, but reasonably comparable to any normal non-ill person). Maybe it's not step-like, but it seems to have some kind of process behind it...

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What a wonderful topic. Strangely, I have been thinking along these lines myself this weekend. I am coming up on the year anniversary of when I first got sick (although it took until four months ago to find out what was wrong). I think back over the past year and I am at times amazed by how positive I have been despite the many things I have had to give up (i.e. a job I love, friends, independence, a life in Memphis to move back home to Maine, etc.). Perhaps it was my work as a child life specialist with pediatric oncology patients for the past four years that has helped me to think about this situation in a different light and make it through the dark days. . It's funny, I find myself thinking about situations I helped those children and families through and think, how did so and so deal with these same feelings of grief or frustration or helplessness. I am greatful that I was able to learn the lessons I did from those patients.

Don't get me wrong, the tears still come....As I am ill longer I do find myself wondering "what if I never get better?", "what if I can never get back to my dream job?" "how can I change my perceptions of my dream job to perhaps return some day?", "will I ever find someone to love and have a family with if I continue to be sick?". I think what gets me through day to day is to take advantage of the good days and know that there will be bad ones.

Thank-you to everyone who has written, I believe I will learn a lot of coping techniques from all of you.

Sheridan

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I don't like the term letting go- I assiciate it with passivity and resignation.

I have been coping better with the bad times thanks to a cognitive therapist. I think it's important to still aim to do things and not to give in.

But to accept that life goes in waves for everyone- sick and healthy, and that it's not about life going in a straight line of perfection for anybody.

That's been the single most helpful thing for me over the last year.

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Hi Masumeh,

Your summary is pretty good.

You are asking about the time frame. The time frame is not linear. We can go from one emotion let's say denial to acceptance to twilight and anger. People will progress at different rythm and some emotion will be easier to deal with for certain people at certain time. Some emotions can overlap at times.

Having a therapist is even more helpful.

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Masumeh, I like your summary of the stages.

I'm not sure it's a linear progression through them. Maybe more cyclic. I'm thinking about depression and flexibility in particular. I find I tend to go through a bout of depression every few years, and when I come out the other side I've figured out some new ways to make my life work better. I suspect that will be a lifelong process for me -- the health gets a little worse, I get depressed, then I find a way to work around it or to focus on a deeper level of what I want out of life.

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i agree. i am up and down all the time. some times i feel like i am on top of the world and this is actually i good thing in the right light and at times i just want to curl up and hide from it.

i do like your list.

dionna ;)

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