Anyone get stuck and not get out of it? If we are on this board I'm guessing no. But I feel suck, like I will never improve. I have some hope but I feel it's all just a lie to keep me trying. Do we ever actually get better? I watch this board, some say they do but then I see it crash again. The nature of the illness. Does everyone with this illness go through worries that it won't actually get better? Is that the nature of the illness or just one of my symptoms? My therapist said "you might not get better and that must be really scary" YES it's scary, especially when you put it that way. I think she meant well....trying to connect to me. I'm reasonably stable, (I think) maybe not. I don't know *cries*..... is right now as good as it gets? I don't know.

[cashart10]

All my love ElsaMars!

I often feel like this; especially when depressed or severely stressed. Sometimes I wonder if even my pdoc feels this way. It seems as though a few months here and there is all I get.

I think I need to hear from my doctors that I will get over all this. But they can't say that with any certainty or professionalism I imagine. I need a profession to say "you've got what it takes" but how can they when even I don't feel that way more often than not. Hugs to you Cash.....I believe in you!

[scatterbrained04]

I generally feel I'll get better in the short-term, as in "this episode will pass." My gut says that over the long haul, I will not get better. In fact, I'll likely get worse.

[Victoria'smom]

I'm a lot better right now. Not great but if this is stable it sucks. I feel like it'll be crash and burn, rebuild just to do it over again. There are many things I'm grateful for and have improved. I've kept rent and utilities paid for on time for 3 years. We've lived in the same place for 3 years. That's a record for us. I've had a full year without hospitalization. So in ways it does get better but it's never average.

Originally Posted by scatterbrained04

I generally feel I'll get better in the short-term, as in "this episode will pass." My gut says that over the long haul, I will not get better. In fact, I'll likely get worse.

This is how I feel too. ((Hugs))

Those are accomplishments MM. it seems you feel very similar to myself too. (((Hugs)))

I'm on the depressed side of stable I think. I'm afraid to add an AD though as I don't want to rock the boat, while simultaneously knowing I need to do something. I need to work on goals. Maybe writing a list of activities to accomplish each day. I've heard that helps but it sounds so daunting.

[bioChE]

Like scatter said, a passing episode is one thing. In the long term, the prognosis is not good.

"The prognosis is not good" that about sums it up. Crrapp!!! So true and so scary.

[Wild Coyote]

The thought that I might not get better is a frightening thought.

My own story is very complicated. I have several life-altering conditions. I have been "totally medically disabled" for 30+ years now. I was never expected to get better, said my doctors. Initially, I was not expected to live very long, either.

With all conditions, there has been progression and they have become even more difficult to treat. Some are unresponsive to treatments.

I have relapses, usually followed by eventually improving a bit.
Overall, my daily functioning is more impaired than it was 10 years ago, for instance.

My pdoc describes my two modes of functioning as: "...doing poorly and less poorly, yet still poorly."

When I was younger, I used to ignore the doctors words when they'd told me they did not expect me to fully recover. I remained, for the most part, positive and hopeful. (This was how I'd coped.) 30 years later, I find myself grappling with the reality of the time passed and with how I still struggle so much in order to function minimally.

My current inner crisis is exactly that: "What if I don't get better?"

I know some of my physical conditions will not get better; yet, may be manageable. I need my mind strong to keep up the fight though and this depression has been so incredibly discouraging. It's looking like it's treatment-resistant. Again.

My physical conditions are full of pain and fatigue, which exacerbates the depression.

I keep pushing with every ounce of my being in order to do the basics each day, I still fail some days. If I did not push, it would be a disaster: not showered, not dressed, no meals, etc.

I am taking 4 meds just to try to address the depression. (I am taking other meds for the physical conditions.) I am dedicated and don't miss a dose. I am not only dedicated, I am so desperate, I don't dare to miss a dose.

What if I don't get better?

My pdoc and I have been talking about this very subject, as have my husband and I. I feel like a huge failure and as though I am really letting my husband down.

The idea of not getting significantly better is frightening and is sad.

Heart-to-heart, Elsa.


WC

Oh WC, my heart breaks to read your story. You are far from a failure....so far from it it's not ever something you should think. Not for one second. I too feel I'm letting my family down. I know how it makes the heart ache. I want so badly to improve....for my parents to see me doing well before it's too late. For them not to have to worry about me and be at peace.

Does working with your doctor and exploring these fears or not getting better help you WC? I tend to not look at my reality too close, I hide behind a facade of "it's okay" even when it's clearly not. I need to live in reality maybe, or maybe not. Fake it till you make it I've been told. It seems a lot more complicated than that.

(((WC)))

[Wild Coyote]

Originally Posted by ElsaMars

Oh WC, my heart breaks to read your story. You are far from a failure....so far from it it's not ever something you should think. Not for one second. I too feel I'm letting my family down. I know how it makes the heart ache. I want so badly to improve....for my parents to see me doing well before it's too late. For them not to have to worry about me and be at peace.

Does working with your doctor and exploring these fears or not getting better help you WC? I tend to not look at my reality too close, I hide behind a facade of "it's okay" even when it's clearly not. I need to live in reality maybe, or maybe not. Fake it till you make it I've been told. It seems a lot more complicated than that.

(((WC)))

Thank you, Elsa. You are very kind.

"Does working with your doctor and exploring these fears or not getting better help you WC?"

I have done my best to avoid these thoughts and any conversation on the topic with him for years. Just 5 months ago, I'd asked him if he'd write a letter of recommendation for work to voc. rehab. Talk about denial! (He did not say yes or no.)

When this topic became unavoidable by dogging my own mind over the past few months, it has been helpful to have someone to talk to freely. I can talk or even cry and not worry about discouraging my pdoc.

I am very open with my husband; yet, I also know I sometimes need to be careful not to totally discourage him. He can get depressed, too, and that would be a real mess.

My pdoc knows all of my medical history and is very compassionate while also confirming some realities. We explore: "Just what does it mean if you cannot fully recover?" It's exactly where I have been for years, I'm just starting to face it, because there is no more avoiding it.

I cannot imagine living a life of functioning on this level, which has been minimal functioning. This bout of depression has been horrible. I hope I can recover enough to function better on a daily basis.

WC

Deep inside I know that I HAVE to get better. My physical issues hold me back and my depressions and other mental health issues keep me from focusing on my physical health and doing what needs doing to potentially ease my physical health. I'm stuck in a loop right now and need to break free. When my physical stuff eases, which is rare, my mental takes over, when mental eases, physical roars like a lion on the prowl. Rinse, repeat and that is my life. My oldest son has autoimmune issues and once I told my friend this and she said something to the effect of "he has aids, you shouldn't tell people this" people can be so dumb and inconsiderate. I know all too well the pain of steroid use too. My son was on 80mg daily through IV which is equivalent to over 100 in pill form and the poor guy blew up like a literal balloon, all while going through puberty at the same time. It was all so unfair.

It has to get better, it might not and maybe someday I will be forced to accept things as they are but for now I still have options to try and time does heal a lot of issues. I never thought I'd recover when I had a major episode in my 20's but I soared and accomplished so much after that crash. It's possible, it has to be.

You are beautiful as you are WC, enough, MORE than enough. I want more for you though....you deserve so much more than what happened. Thank you for sharing your story, struggles, pain and truth. Sometimes when I write it all it helps, other times it's so painful. I hope I did not cause you additional pain. (((Hugs)))

[Wild Coyote]

Dearest Elsa,

No worries. You never cause me more pain.

I'm okay with sharing what I've shared.

I hope my story doesn't cause anyone to despair. My story is actually quite victorious, as I beat the odds on all of the doctors' predictions for many years.
I still beat the odds. Last Fall, I'd trained myself to walk 2 miles a day, even though all of my doctors were telling me I could never do it. (An autoimmune condition had attacked my feet and I had been in a wheelchair or on crutches for 3 years.) They'd all told me nothing could be done and this condition was permanent. I am walking on my own, no walking aids and walk 2 miles at a time. Nobody can tell I was ever unable to walk. My point is: I still buck the naysayers!

As much as your and my stories may be alike, they are also very different. Everyone's is different. Nobody should think of their own prognosis in terms of my story. It may be time for me to accept some things that other don't need to accept.

Love, Hope and Healing to All!

WC

[Sunflower123]

Originally Posted by Wild Coyote

The thought that I might not get better is a frightening thought.

My own story is very complicated. I have several life-altering conditions. I have been "totally medically disabled" for 30+ years now. I was never expected to get better, said my doctors. Initially, I was not expected to live very long, either.

With all conditions, there has been progression and they have become even more difficult to treat. Some are unresponsive to treatments.

I have relapses, usually followed by eventually improving a bit.
Overall, my daily functioning is more impaired than it was 10 years ago, for instance.

My pdoc describes my two modes of functioning as: "...doing poorly and less poorly, yet still poorly."

When I was younger, I used to ignore the doctors words when they'd told me they did not expect me to fully recover. I remained, for the most part, positive and hopeful. (This was how I'd coped.) 30 years later, I find myself grappling with the reality of the time passed and with how I still struggle so much in order to function minimally.

My current inner crisis is exactly that: "What if I don't get better?"

I know some of my physical conditions will not get better; yet, may be manageable. I need my mind strong to keep up the fight though and this depression has been so incredibly discouraging. It's looking like it's treatment-resistant. Again.

My physical conditions are full of pain and fatigue, which exacerbates the depression.

I keep pushing with every ounce of my being in order to do the basics each day, I still fail some days. If I did not push, it would be a disaster: not showered, not dressed, no meals, etc.

I am taking 4 meds just to try to address the depression. (I am taking other meds for the physical conditions.) I am dedicated and don't miss a dose. I am not only dedicated, I am so desperate, I don't dare to miss a dose.

What if I don't get better?

My pdoc and I have been talking about this very subject, as have my husband and I. I feel like a huge failure and as though I am really letting my husband down.

The idea of not getting significantly better is frightening and is sad.

Heart-to-heart, Elsa.


WC

This post has tears running down my face. I wish you could see you the way I see you. You're a Rock Star!!! There's no failure there. It's like h*** has been nipping at your feet for 30+ years and you keep kicking it in the face. What stronger person could there be? Not only are you in pain but while you're in pain you're trying to help others. No failure. You're great and I'm very grateful to know you. I know the reality of the illness and it's progression. ...still makes you awesome.

[Unrigged64072835]

It's good to see people surviving and trying to thrive every day. It gives me hope. Even just to get through one whole day is a victory in a way.

[jacky8807]

I think as long as we keep trying to get up after we fall then we g'on be alright

[Wild Coyote]

[QUOTE=Jennifer 1967;5663093]This post has tears running down my face. I wish you could see you the way I see you. You're a Rock Star!!! There's no failure there. It's like h*** has been nipping at your feet for 30+ years and you keep kicking it in the face. What stronger person could there be? Not only are you in pain but while you're in pain you're trying to help others. No failure. You're great and I'm very grateful to know you. I know the reality of the illness and it's progression. ...still makes you awesome.

[/QUOTE:



I am blushing.

Thank you, Jennifer.
Most of the time, I can only see what I haven't done or where I have fallen short. I'm feeling a lot of that right now, which may be partially affected by the depression.

I think you are quite special, Jennifer.
I am glad you've joined in with us. It's fun and enlightening -- an all around pleasure -- to have you posting here. You're so heartful, too!

In Appreciation of You,

WC

[bukowski06]

Hi ElsaMars,
I think doctors can be jerks sometimes without even knowing it, it's not about professionalism. In fact, doctors get called out all the time for having terrible bedside manner with patients and now it's a big part of medical ethics training for doctors because they get so many complaints. I also work in the health care field and we have to have a lot of training in terms of psychosocial care because it is someone's life and their families that you're involved with.
I just wanted you to know that not every medical professional is a jerk. Have you ever tried mindfulness training? I have been reading up on it and it sounds promising.

Thanks Bukowski. Doctors can be jerks sometimes, yes. I've had more than my fair share sadly. I'm learning to stand up for myself though, but it's hard. I really shouldn't have to.

Regarding mindfulness, I've not learned it. I read something about it long ago about being in the moment but when my issues flair, all the sights I see and sounds I hear are traumatizing and so being in the moment is not good for me. I might be understanding the practice and perhaps it's something I can consider. My docs have said that CBT is probably what would be most useful for my issues and they are setting up a program that I will hopefully be able to attend soon. I also got a CBT class on Groupon I'm working on. They talk about mindfulness in this class so I will soon see if it can help. Thanks for the suggestion and for your supportive words. (((Hugs)))

[hahayeahtotallylol]

*duplicate*

[hahayeahtotallylol]

My ability to get better doesn't have to do with my illness, but who i am as a person. I feel as though a beast has been living inside of me, waiting for the ideal time to come out. Since none of my life goals are materializing, he is coming out prematurely.

In regards to BP, i think the illness tends to progress. Luckily, i take my medication. Although it leaves me so flat that at times i "forget" them if only to remember what it is like to feel.

Originally Posted by ElsaMars

Thanks Bukowski. Doctors can be jerks sometimes, yes. I've had more than my fair share sadly. I'm learning to stand up for myself though, but it's hard. I really shouldn't have to.

Regarding mindfulness, I've not learned it. I read something about it long ago about being in the moment but when my issues flair, all the sights I see and sounds I hear are traumatizing and so being in the moment is not good for me. I might be understanding the practice and perhaps it's something I can consider. My docs have said that CBT is probably what would be most useful for my issues and they are setting up a program that I will hopefully be able to attend soon. I also got a CBT class on Groupon I'm working on. They talk about mindfulness in this class so I will soon see if it can help. Thanks for the suggestion and for your supportive words. (((Hugs)))

Hi -- I totally agree with you here: "[regarding] being in the moment but when my issues flair, all the sights I see and sounds I hear are traumatizing and so being in the moment is not good for me." That's why I dislike "meditation." I have my own ways of meditation - playing a musical instrument is one. Listening to my favorite classical music Pandora stations is another. Just listening -- not doing anything else, no background music from that beautiful music. Probably drawing is the best meditationi for me, but I don't do it very often.

CBT works for me, but only up to a point. It does not help me with mood swings, but does help resolve communication issues and some other stuff.

Here's what's been best for me , if you can get it, because unless it's through a clinic, it's very expensive from an independent therapist. I also would like to be in a group, but I don't there are any for this.. What has helped me the most is process, deep Art Therapy by a trained Art Therapist. Jungian dream processing is also very great, and the Art Therapist I had at the clinic I used to go to did that with me, too -- till the -- I don't want to say "powers that be.." it's Destroyers that Be -- decided to get rid of the whole art program.

Yeah Flowerbell, I've never been able to meditate, though I've tried. My mind cannot clear without extreme distraction it seems. I've always utilized art as therapy too. I thank my mom who is also an artist for teaching me to paint and crochet as a child. I've also turned both painting and crochet into side businesses but that ended when my depression took over and for now, I think adding money into my art/therapy is a bad mix. Crochet is like meditation for me. I zone out and acquire peace and also have something to show for it in the end. Crochet is hard on my hands and wrists though so sometimes I can't do it but when I can, I really should. I've been looking for projects recently and now that you've mentioned the art therapy I think I really need to make it a priority because it's truly helpful. I'd also like to learn an instrument. I was focused on guitar but when I try it's too painful for my arthritic hands. Maybe piano would be more gentle. I could get one of those keyboards perhaps. What do you play? I like to sing too.....I'm not bad at it but far from great. But who knows, maybe I could take singing lessons someday! I think art therapy was a wonderful suggestion and I thank you for it. I never thought of my art as actual therapy but it was. I will ask my provider if they offer something like this.

Hahayeahtotallylol, I wish you the best. Nobody is perfect and we all have dark thoughts sometimes. It doesn't mean we are bad people usually, just that we are hurting and need some help, love and guidance. I hope you get what you need to feel peaceful.

[xRavenx]

Elsa,
I wish I had better words or advice to give, and I am sorry about the pain you have been through and are still struggling with. I do know that no matter how hard those of us with BP fall, I know it is important for us to try to focus on the fact that we are human. We are more than just our illness.

BP sucks so much. I can relate to feeling I'll "never get better." I've been having a lot of ups and downs lately, rapid cycling and severe anxiety...but DBT is something I've found useful, but sometimes it doesn't work when my symptoms are severe. It's an uphill battle. I think it's great you have interests and are exploring hobbies. Please remember this illness doesn't define who you are; even if it may feel like it. Take care of yourself.

[Sunflower123]

[QUOTE=ElsaMars;5663681]Thanks Bukowski. Doctors can be jerks sometimes, yes. I've had more than my fair share sadly. I'm learning to stand up for myself though, but it's hard. I really shouldn't have to.

I usually luck out but I went to a gastroenterologist last year that took one look at my meds list and it immediately went down hill. He said I was on too many meds and proceeded to try to take me off 2 of my psych meds. The bad service continued. I've never once reported a doctor but I filed a complaint with his hospital. Fortunately, I don't run across losers often. I'm sorry you do.