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Originally Posted by Bill3
I look forward to seeing these!
You're welcome. 
I think it best to stick to a more measured pace of change. I think that today was good, actually. Progress day by day I think. I question that you can more or less arbitrarily pick a number that seems reasonable and just expect to reach that number by discharge. I see that as a path to feeling defeated.
I think that targets should be firmly connected to where you are now. So today you maybe averaged 9 minutes for 16 hours. That is better than yesterday. Maybe it is only 6 percent better (about 1/17), but 6% is a good change for one day.
I also question whether you will just be able to drop every day, day after day. I would think that allowing for some adjustment and plateauing is more sustainable. So If you are able to do 8 minutes for 14 hours today, I would stay in that area for a while, like say 5 days. That would be a substantial change as it is: from roughly 17 x 10 to 14 x 8. Allow yourself time to adjust.
When you are discharged, I expect that you will see some falling back as you might need to pace more at home. Maybe I am wrong. But I say allow for that, see if it happens, and then stabilize before trying to move forward again.
I am wondering what is the reasoning behind discharging you to home when these large problems exist.
(and more wanting to pace I suppose)
How much does feeling scared encourage change?
Yeah. Don't try for huge drops in pacing. Aim for little by little.
Good.
You mentioned staying alive and you speak below about often not caring about that. What are your reasons to die, and what are your reasons to live?
You'll recall from that article that ambivalence about change is a hallmark of people entering an ED program. It comes with the territory. And as to family/friends and work: well it sounds like right now those will be limited anyways, due to your health. Recovery, though, gives you a shot at having them for a long time.
I am wondering whether now is the time to speak about confronting issues from the past. I agree that you will need to do that eventually, but right now it seems to me that the main thing is to work on staying alive if that is or can be a goal and I hope that it is.
Suppose a person is (re)starting to study math. She could say to herself Ah, this is too daunting, how could i ever (re)learn calculus? and consider giving up. But of course, in due time, she could work her way up to calculus.
I think that when you are stronger and further along in recovery you will be in a position to look at these issues from the past. They would be rough to look at now, I imagine, but you don't have to do that.
Well I saw you post in the ED update thread (btw I suggest starting a new thread there with your question).
This sounds useful for giving yourself a chance to live.
I go back to my question about reasons to dies versus reasons to live. What are reasons to die? Right now you are essentially making death the default option: if nothing changes, people are telling you that you will die. Is that what you actually want, or is it just what you might accept by default, rather than attempt to change?
I think that reasons to live can help you summon the strength you need for treatment. So what might be some reasons to live? You seem to enjoy and take satisfaction in supporting others here with your professional knowledge and you do so in a caring manner. You seem to have a good "bedside manner" here, as they say. Are there reasons to live underlying what you do here for others?
You've mentioned family and friends, being apart from them and wanting to connect via facebook, email, etc. (Did you do any of that today?) Could they provide reasons to live? You've mentioned journaling (which would be a good outlet for frustration and other feelings arising from reducing pacing). To what extent could self-expression provide a reason to live?
Think about times in your past where things went well, even if not completely well.
Think deeply and tell me: what are reasons for living?
Thank you for your kind words, again. I am always happy when i see that you have posted.
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Okay...this is going to be super long. I woke up early and read this and I've been thinking about a lot of it ever since. A lot of it really made me think. I think I've come to some kind of rough conclusions, but I needed to get there eventually. I just don't think I want to admit some things that are probably painfully obvious to everyone else.
My lists: 1) Pros of no treatment: I'll be around for friends and family events in near future, I can focus now on moving forward with my life in other areas (theoretically), along the same lines, I can focus right now (theoretically) on future planning regarding career, relationships etc, I don't have to worry about admitting to family/friends (who don't already know) or work that I'm "sick", will hopefully boost my self-esteem by giving me a chance to prove to myself that I'm capable of "saving" myself, will allow me to deal with the ED in the real world in real life situations as it's likely going to be a life-long battle and IP treatment just isn't the real world, won't miss any more work and it'll be easier financially, will allow me more time in the immediate future to focus on preparing to return to medicine
2) Cons of no treatment: the physical complications that are occurring are pretty serious, could and probably will kill me in the near future if nothing changes, due to the malnutrition and purging I'm kind of a mess - mood swings, irritability, anxiety, depression etc, I've spent and will likely continue to spend way too much time in the hospital, ER, doctor's offices, at the infusion center etc, I generally feel like crap most of the time - I'm always dizzy, nauseous, always have a headache, pass out regularly, heart palpitations etc, all the time I spend obsessing over food, calories, exercise etc could be much better spent focusing on career, family, friends, other relationships, it's much less likely I'll ever be able to move forward in life if I continue to be stuck in the "ED pt" role, less likely I'll ever get married, have children, be where I want to be career wise if I don't recover - areas that are really important to me, uncertain if I'll be able to recover without help via an IP program. At the very least will be much more difficult to break this cycle, I obviously haven't been able to thus far, even being hospitalized for close to 6 wks.
3) Pros of treatment: Will likely result in me being mentally more stable, will likely have an improvement in physical health and much less likely to die in the next couple weeks or months, I MAY feel better eventually if I deal with past issues, it may be what I need to do in order to move forward, I'll have more time to spend on other, more productive and/or more fun things, emotionally, there will be more room for other people/activities/career in my life, people in my life will likely stop worrying so much, more energy to devote to other interests and moving fwd w life, it may be easier to recover with extra help/support/accountability, eventually, hopefully will have room in my life for marriage, children, career path I want, recovery will give me a chance to reinvent myself outside of the "pt" role - this may be, more likely than not easier with IP treatment than with only outpatient treatment
4) Cons of treatment: It's a locked unit - due to past trauma issues, I have big time issues with this idea, I honestly don't know if I can handle even the idea of it, I'm not sure I'm ready to deal with past issues that I'm guessing from past experiences the team will want to discuss, I'm kind of scared who I am without my ED - it's been more than half my life, I'm terrified of gaining weight, my family and most of my friends will assume I'm 100% better the second I leave treatment and will expect me to act and function as such, I'm also afraid I'll lose what little support I do have from them once I look like there's no longer an issue, I'm afraid I'm going to fail at everything - ED tx, my career, life, I almost don't even want to try, I almost feel like I'd rather not try than try and fail, and practical issues - I'll have to miss even more time off of work, which may endanger my job, and I've already missed a lot of friend/family stuff. I don't want to miss even more.
So that's my list....
As far as the pacing goes, I see your point. It's a valid point. I really am going to try for 8 min X 14 hrs ( so far so good..). I'll give myself three days of that and then try to drop down another hour or two. It makes sense not to do too much too quickly. Dropping every day IS probably too much. And you're right, it's probably going to increase once I go home. To be honest, if I'm able, I'm going to probably going to start running again, or at least going for long walks, so I'm going to have to really watch that and keep an eye on how long and how hard I'm exercising so I don't backslide too much.
They're discharging me home primarily because there's no real reason to keep me anymore and I really want to go home and I've been pushing for it for a while. It's a medical hospital, doesn't have a psych ward (not that I would ever allow myself to be admitted to a psych ward - it's complicated, but it would cause huge issues with my medical license. For some reason they don't seem to care about receiving ED treatment), the electrolyte issues are pretty easily and quickly correctable, and the cardiac stuff - the prolonged QT etc corrects when the electrolytes are corrected. For a while, there was a lot of other stuff going on - I was septic with a serious infection, my sodium was so low it had to be corrected over a week or so in the ICU (I've had previous brain stem damage from over rapid correction of my sodium) and my heart was really malnourished and wasn't pumping correctly essentially due to loss of muscle mass. The infection is gone, my sodium is often low, but not nearly as low as it was and I've gotten enough nutrition that my cardiac function has improved. I want to go home for a lot of reasons, but one of them is so I can pack. It's stupid, but if I'm going to IP treatment, I don't want to be directly transferred there. For some reason, probably not logical, but I really need to be the one to pack for treatment, clean my house, run some errands so I'm sure I have absolutely everything I could possibly need etc. And I'm just plain tired of being in the hospital. It's boring, it's mundane, I'm tired of telling 19 people the same thing ten times a day etc. Yes, I'm obviously not doing well and my attending was talking today about keeping me here until I could be transferred, but I totally shot her down because a) I'm still ambivalent about going and b) all of the above. We've made arrangements for me to see my therapist once a week, my doc once every two and I'm going to the infusion center once a week for labs, IV fluids, electrolyte replacement and they'll monitor my tube feeds for the 8 hours I'm there . This probably isn't enough, everything probably needs to be doubled, but this is what insurance is allowing to begin with, so that's how it's going to be. It's likely I'll end up in the hospital again fairly soon, not that I want to, I really, really don't, but things are just that unstable. Unless I make some very drastic changes like now.
Honestly, feeling scared doesn't encourage change at all anymore. It should. I wish it did, but I have this ridiculous invincibility complex and I'm convinced that no matter what, nothing's going to happen to me. My esophagus has ruptured twice resulting in borrehaave syndrome and mediastinitis, I've had two heart attacks, I've had central pontine myelinolysis (brain stem damage from sodium correction)I have seizures and myoclonus (twitches) due to brain surgery for an infection that was a direct result of my ED, I've had abscesses in my throat, neck and spine, even the meningitis was indirectly due to this damage (it's complicated) and I have tons of other more minor issues - GI probs, nerve damage from vitamin deficiencies, dental issues etc and I've somehow walked away from it all when I probably shouldn't have. So nothing really scares me anymore. Like yesterday, they came in and said your potassium is 1.6, your sodium is 119, your phosphorus is 0.7 and your magnesium is 0.9 and my response was, "Oh, it's fine, they've been lower before". Those are critical levels. They can result in cardiac issues, neuro issues, all kinds of things and I totally disregarded it. So, this is really long winded, but no, being scared doesn't help me change at all. I really wish it did.
Some of the time staying alive is a goal. Sometimes, I just don't care what happens one way or the other. I could live, I could die, it's all kind of the same to me. I agree that it may be very difficult right now to address past issues, but my therapist is really pushing for it and I do trust her and her clinical judgment and I think that may be part of what's holding me back and why previous IP treatments didn't work for long because I need to find a place of acceptance for some things and in the past, I've left treatment, done well for 6 months or so and then started obsessing about past mistakes, hurts, things done etc. And that's usually what's begun my downfall. So I think I do need to suck it up and face things. Maybe not in the very beginning, but shortly after.
Why do I want to live? Great question. A lot of times, I don't really know. Other times, I know I want a chance for a future. As I said above, I want a family, a solid career, hobbies, a chance to be happy (whatever that is), the opportunity to do the things I've always wanted to do - travel to Russia, return to Sweden to see my cousins again as I haven't been in 3 or 4 years, do some volunteer work, spend more quality time (not in the hospital) with family and friends, find some new hobbies, run another marathon etc. And I really do like "helping others", as cliché as it sounds. Thanks for saying that. I've always been told I've had a good bedside manner and I like to think I do I try to. Everything I say, I do say because I honestly care and want to help. All that kind of stuff is a large part of what keeps me going, I became a doctor because in part I was fascinated by medicine, but also because I honestly really enjoy trying to help others. It does help to feel like I'm at least doing some small thing that may help someone else and that maybe, if recovered and healthy, I'll be able to go back to medicine and do what I really want to do. That's probably my single greatest incentive for everything - staying alive, trying to recover, getting treatment etc right now.
Why do I want to die? That one's a little easier. Mostly because I'm just so tired. Tired of everything. Physically tired, mentally tired, emotionally tired, tired of struggling, tired of doctors and hospitals and IVs and meds, I guess I'm sick and tired of being sick and tired, which I've heard a lot as an impetus for change, but just the very idea of all that work exhausts me. And I'm honestly afraid of what the outcome will be and that I won't like or won't be able to handle what or who I become, not that I'm doing a great job with where I am now...And you're right, if I don't make a decision and soon, the decision is going to be made for me and I'm going to die as I'm spending hours debating the pros and cons of life and death and treatment vs. no treatment. And I think that would ultimately be sad, especially if I end up saying I want life and treatment and my body says, "so sorry, so sad. Too late, too much damage done". And I end up dying anyway. That would really suck.
I get ambivalence is common, but it still makes it really hard to seek out treatment. I wonder what is different between myself and the pts in the study and why they wanted IP treatment while I'm so stuck on the ambivalence piece that the other factors aren't playing quite as big of a role?
I do get that my time with family, friends isn't great quality right now and I'm probably using wanting more time with them/not wanting to miss anything else as an excuse. I really just need to admit some things to myself. And accept them as true whether I "believe" them or not. The idea that I'll have better and more fulfilling relationships once in recovery is one of them.
I did spend some time texting a friend and also spent a couple hours speaking with a high school girl I'm mentoring, so not quite a family/friend, but it was good, a good distraction nonetheless. She's going to come to the hospital on Sat and I'm doing her hair and make-up for prom, so that'll be fun. And I did spend some time journaling. Not quite 30 min, but I will today. I've already started. I think you're right, I think it'll be a good outlet. I'm not sure how or if it'll provide a reason for living, but I definitely think it'll help me cope with everything so I can see past the negative and hold on to other reasons for living.
The time in my life when things were going the best they've ever gone is when I was in residency. I had a built in support structure - fellow residents, great attendings and med ed director and I was doing what I loved and learning a lot. And I was busy. I didn't have time to obsess over things like my weight or food when there were more important things to worry about. There was meaning in my life, what I did every day made a difference, it mattered if I got up and did my job and how I did my job everyday. I felt like I mattered for maybe the first time in my life. I felt like what I did or didn't do mattered so it became much more important for me to make healthy decisions and lead a healthy life.
You asked what are my reasons to live? I think the single greatest reason is just to give myself a chance. A chance to be who and what I want to be, to do what I want to do and what I have the potential and capability to do. If I die, I'll never have that chance, I'll never know what might have been or what could have been. And I don't think I want that...I don't think so. Not at this moment anyway, but who knows how I'll feel tomorrow or 5 hours from now. It really is exhausting being stuck in this cycle.
Thanks for this. This really made me think. It was hard, but in a good way
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