how to accept without giving up?

[Radha]

i find it hard to find the right balance of accepting your situation and growing used to be sick and then still continuing to fight and look for something that will make you better, i hope i am explaining my feelings accurately, i have had to become used to being sick out of just the need for survival, but then how do you keep yourself from getting too comfortable? thanks for any input

radha

[sunisshining]

i think what you mean is that in order to at least semi-function and not completely crash you kind of have to lower your expectations temporarily, but lowering your expectations makes you feel like you are surrendering/waving a white flag. at least that's how i feel. and then when you are feeling well, you want to do everything you were missing out on but then that usually results in crashing. so then you realize that once you are feeling better you still need to make some accomodations but then that makes you feel like you are waving the white flag and letting your condition get the best of you/dwelling on it. i still haven't found a way to solve this. but, i think i am eventually going to learn that maybe a constant modified life is better than a tower of terror one (up and then quickly crashing down). there will still be ups and downs, but, yeah. i dunno. i think it's natural to want to enjoy everything you miss out on, and then that leads to overdoing it. just realize that pots is real and that just because sometimes it is better doesn't mean that you don't have to keep it in mind. i guess it's like driving cautiously. it's horrible to think that there are constantly dangers around you and most people don't think like that - it's not healthy. but paying attention and being on guard is safe. just cruising and not paying attn isn't healthy/safe, nor is paying too much attn.

i don't think i've helped, but know that you are TOTALLY not alone.

sorry i couldn't help much!

love u lots,

praying for you,

hugs,

sun

[Radha]

thanks for your reply sun, but that isnt what i mean exactly, i mean that you have to get used to being sick and get somewhat comfortable with the life you have even though you hate it, but then you dont know how to get out of that rut or that comfort zone even though you dont like your life as it is, you dont know anything else, because its been so so long since you were well, that just the thought of change, even a good one, makes you anxious and resistant to that change, anyway, its complicated, all these feelings, how do you keep yourself from getting too complacent and too used to the life you have now?

radha

[sunisshining]

ohh..sorry. so, you're saying that once you crash, even once you are doing a little better, you are too scared to get out of crash mode/maintaining energy mode? well, i think that's something i lack but wish i had! altho, i don't mean that insensitively cause i know it obviously bothers you but i think maybe take baby steps. like what are the things most difficult for you. like everyday things, i'm assuming? i think if you try too much at once you may crash and then you associate doing something with crashing and get scared of doing something. like vomiting so much and then being scared to ingest anything (something i've experienced lately) but then u know you need to eat to live. well, eventually, you'll be able to eat..or do some everyday things. just take baby steps. i bet others will be better at answering. but instead of thinking of something as something that will totally make you feel worse, think about ways you can do it that will be easier on yourself (walking more slowly, easing into chores/work, doing some work alternating with some rest...)

sorry for not being much of a help.

but i'm praying for you!

And I know God can help you!!!

love u lots,

sun

[morgan617]

Oh not to worry, as soon as you get too comfortable some new symptom will come along and blast you... sorry, but this is just not an illness that really allows you to get too comfortable. Actually I think it's healthy to come to terms with the fact that you have a lot of limitations and you can accept it and do the best you can, and be okay with that. I say good for you. I'm pretty much there too, although I do have my moments... So don't think of it as too comfortable, think of it as a healthy adjustment to an unhealthy thing. morgan

[yogini]

I think what has helped me is to keep setting very small goals for myself. At first it was something as little as taking a few extra steps, sitting up for a little while longer or eating a few extra bites. It then graduated into walking for longer periods, trying different forms of exercise, going to the store, etc. Sometimes I haven't met my goals, I got sick trying to do so or it took me a few weeks or months to get there. But it helped me to feel like I was trying to move forward little by little.

[lalalisa]

Radha,

Thanks for your honesty - this illness is so amazingly difficult. I tend to struggle with a battle between hope that I'll improve and then thinking that it's going to last my lifetime.

It's hard not to plan on being sick when it lasts so long.

I pray that you improve each day,

Lisa

[purplefocus]

I don't have any advice, I just wanted to add I know how you feel. This is my scene......I get comfortable in the low stage, but I think I should be pushing myself incase I can get better.......then I do push myself and knock myself into a large crash. I like to think that it will go away one day but I do try to stay realisitic. My fear is becoming so deconditioned that I won't be able to get out of it.

purplefocus

[Nicole's Mom]

Dear Radha,

I am still on a break from posting but since I was beckoned recently to give an update on Nicole I started to peek in a bit to see what has been going on. I happened to check today and saw your post.

I am deeply moved by what you are saying and I feel compelled to respond to you. I want you to know that even though I have dropped out of sight I think about you and I keep you in my prayers. I think you are a very, sweet, special person. Being Nicole's Mom, I think I have a good idea what you mean by what you wrote. You said:

"the thought of change, even a good one, makes you anxious and resistant to change . . ."

I think that if you examine this- you might find a lot of information in that one partial statement. In this post where you make this statement you stopped yourself by saying- "it's complicated". I think there is something there within that partial statement that is very, very important for you to really address with all your heart and soul. The fact that you have this self-awareness about being anxious and resistent perhaps is a very important awareness to have. I've always heard that awareness is half the battle. I think it would help you a great deal to speak further about this specific awareness

You stopped yourself by saying it was "complicated". I wish that you would have not stopped yourself in the middle of your thought- and continued to write. You have been in your situation for longer than you ever imagined you'd be and you have a rather difficult situation. But it doesn't mean you are stuck. I think for you- over time- what Rita said about taking baby steps is a very useful way to start moving forward. Yet that would bring about change- and this is where your anxiety kicks in. It's like there is a catch-22 going on, maybe??? Thus back to what I was saying - examining the notion of even small change and that anxiety such a thing brings to you would maybe be a starting place for you.

Nicole has started keeping a specific type of journal- suggested by someone who understands her - maybe this type of journal could help you. She writes about what it would be like to get better. What does she imagine it would be like.

I feel so much compassion for you Radha. I know your situation has not been easy. Again I encourage you to find the words to express what you really feel deep down about that anxiety you described regarding change even a good one- even if you do it privately. Of course this forum is a very safe, warm, encouraging place to express yourself. But either way- I hope you carry on with that thought process.

I hope you don't think I am being pushy or sounding like a know it all by what I wrote. It' just that I was so moved by what YOU wrote and I do believe I understand where you are coming from.

Sending Best Wishes,

Beverly

[EarthMother]

Eckhart Tolle has some cool insights on this topic (I'd really recommend reading his book the power of NOW.) In short, we accept what IS. How could we not? This IS what IS. We accept that. And we don't project what IS now into the FUTURE and we don't dwell on what WAS in the past. Easier said than done I realize. But if we believe this philosophy than "illness" does not exist in the NOW. It needs a past (story) and a future (project/worry). The NOW may contain pain and disability but our illness contains often a long past and hopeless future.

So how do we accept our illness? We don't. We accept the NOW and we realize that right NOW this is what is. I know my own ego screams loudly at this notion and says "If all I worry about is NOW, then nothing will ever get done! Nothing will ever change!" But I am learning to look at my own resistance and say "Is that so?" And let it simply drop away and come back to this moment. After all this moment is all that we ever have ...

We accept the NOW. We never have to accept our story.

Good luck to you on your own healing journey.

EM

[morgan617]

My fear is also getting deconditioned to the point of no return, like purplefocus. See P.T. thread. But really, I think this is something we have to deal with one day at a time. I think we all get tired and push too hard then blammo, and I think because many of us are homebound with time on our hands, we tend to stew, and stewing is usually a negative thing. It's hard not to. But I just took a shower and am able to sit here for a few and so I think of that as a positive thing. I guess we have to count on the positives and realize that we may fall into a rut of apathy at times, and feel like we are allowing ourselves to get stuck, but that's when we get up and try and see what happens. I don't see anyone here wallowing in self pity. I see people having a bad time, or a little (or a lot) sad, or whatever, but we all come through those times and dust ourselves off and try again. I am amazed at the emotional fortitude of the people on this board. It's what brings me back and often motivates me. Our bodies may be weak, but our spirits are strong! morgan

[Gena]

Radha,

I understand your dilemma about accepting the status quo and trying to be happy in your present moment and condition, yet deep down possibly wanting to do more, be more and to encourage your body to recover as much as it can.

I think we all experience that feeling even if we don't have a chronic illness. Whether to reach out and grab the brass ring and try something new, or to stay in the emotional and physical space where we're comfortable and things are familiar, even though they may not be perfect. Change and taking the steps towards change can be scary, but it can also be exciting and exhilirating.

Like others have suggested, I agree with setting some realistic goals and taking very baby steps at achieving them. I think this will take away some of the anxiety you might have over "change" or perhaps you're scared of failing. For instance, some of the people on this board that have started exercising also keep a progress chart. This will help build your confidence and also figure out what works and doesn't work for you as you progress through time (assuming this might be one of your goals!). You could keep a progress chart for any goal, actually, and just log each step you take along the way towards your goal. And don't beat yourself up if you have some bad days where you don't/or can't do anything.

I am a planner and a plodder and love familiarity and comfort. Since having POTS, I tend to worry about making any changes (big or small) in my life and how those changes may affect my illness (it's hard not to do this). I know it takes a lot of energy to set forth on a new path, but remember the longest journies begin with a single step! I never want to look back on my life and say "I wish, I woulda, coulda, shoulda", ya know? I want to at least say I tried, even if I failed. And really there's no such thing as failures, they're all just wonderful learning experiences. Just remember to set your own pace for trying changes or achieving goals. You really just have to follow your heart and your own inner voice.

Hugs,

Gena

[wareagle]

Radha,

I know exactly what you mean!! I was thinking along the same lines the other week. When I first became ill..I wanted to fight and fight and fight untill something made me better..I didn't want to be sick..I didn't want this in my life..and so I fought it. Then..it became apparent that it wasn't really in my hands..I really have no control over this...I mean I can take the meds. and the salt..and the water and do things to promote healing..but ultimately I don't have control over what's going to happen in the future..will I get better..worse..I don't know.

So then I lapse into acceptance..but I understand what you're saying..where is the line between accepting this condition vs. giving up on the dream of remission? It is a fine line..one that I've also been walking lately..it's like you almost don't want to keep pushing or trying new treatments for fear that it won't help and then you've wasted you're time/energy...and hope that THIS time something would work.

I think you actually answered you're own question by posting your fears hear..the answer is HOPE...no matter how hard this gets..or how long it lasts..or how much we "accept" this illness..we ALL hold fast to HOPE..hope that we'll be given the strength to endure..and that some day things will be better...and you still have that Radha..and as long as you do..you will continue to strive for improvement...weather you do it consciously or not!! When you feel yourself slipping past that line of "acceptance" do something..anything..to reassure yourself that you have NOT given up..like Gena suggested..even set small goals.

Sorry to ramble...I hope some of this makes sense!

[Radha]

i am so touched and moved by all your compassion and support, i feel so grateful to be part of such a wonderful group of caring people, thanks for giving my feelings importance and not in any way making me feel like i'm sabatoging my own chances for recovery, but right now there isnt anything i could be doing to improve, so i have had to accept and try to find bright spots in the day where ever and however i can just to survive mentally, but the hard part is in making your mind accept your situation and your lack of control, and still holding onto the hope and the dream that you will be your former healthy self one day, but then you cant let that desire get too strong or it will just depress you, so you have to allow yourself to get comfortable but not too comfortable since one day you might actually have your dream come true, i think this is more of a factor the longer you are sick and disabled. i cant even remember how it felt to walk and run and be healthy, its been so many years so this life is all i know. sorry to repeat myself and ramble on, i thank you all so so so so much for replying and for caring,

radha