I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: UkrainianTracksuit on January 12, 2022, 07:10:32 AM

Title: Is burnout a "thing"?
Post by: UkrainianTracksuit on January 12, 2022, 07:10:32 AM
Is there such a thing as health care burnout or am I just being a drama queen?

There is the added element that we are living in a time surrounded by health care news non-stop because of the pandemic and that could be adding just to the overall psyche.  I don't know.

Right now, I'm being told that this burnout is all in my head and that I "need to be grateful for health care." That's it. "Be grateful." "You made it to this age because of the health care, be grateful."

Don't get me wrong, I am grateful for the health care I receive, and that they are basically run of the mill diseases that are managed by experienced doctors, there are medications available, and I am still here.

But, I have been living in a health care vortex since birth, because I was born diseased, and I do not recall a time NOT having to go to a doctor. My earliest memories involve health care settings. At least, when you're a toddler, you can bite a nurse, and no one thinks you have any psychoses! Now if I did that....

Over the years, there have been long-term hospitalizations, outpatient treatments, surgeries, ICU stays, and then out of town visits to get medical care. DIALYSIS! That's in the past, but it compounds things.

Right now, my schedule is local renal team every 3 months, transplant team every 6 months, GP every 6 months, dentist every 4 months (high risk protocol), and then the various appointments such as dermatologist, ophthalmologist, etc. Blood work every 3 months and then whatever else needs looking into (ultrasounds). And hey, if my tac looks a little wonky, blood work a week or every 2 weeks.

Thing is, with the beginning of the new year, I already have 4 known appointments in a short block of time, and I've just hit a wall.

So, when it comes from people to "be grateful" that basically lived all their youth really never going to the doctor or once in a blue moon, it just upsets me. I cannot imagine what it must be like to go like around 45 years (give or take a bit) living care free without a major health concern! Now that they are dealing with a problem, and this whole system and level of care is sparkly and new-fangled, and they look it all bright-eyed.

Like, they can cheerily say, "The doctor said I will be high risk for a while as I heal so I need to stay safe" versus the whole COVID doom and gloom experienced here about vaccines and extra measures. That's nice, but it is a permanent vacation (well, as long as on immunosuppression) over here, there is no end. This is chronic.

And then there's all the advice, like to drink pomegranate juice for health...and I just can't...just can't get into why I can't do that. It is too exhausting. Often times, people simply forget (or just don't care) that I am an organ transplant recipient. That's great in some ways, but eh in others.

If I say, "Ugh, I don't want to go to this appointment. It's a review of blood work (that I already saw) and then some preaching about organ longevity, so don't get too comfortable" it means I am tired/fed up but not "giving up" Not sure why they assumed this level of crisis?!

Obviously giving up hasn't crossed my mind yet because hello...I could have pulled the plug on dialysis back in the day. I'm just tired. Anyone ever feel this?
Title: Re: Is burnout a "thing"?
Post by: MooseMom on January 12, 2022, 09:26:25 AM
I felt burnt out just reading your list of encounters with the health care system (and I'm sure there are many more than the ones you've outlined here), so I'd say, "Yes, of course" health care burn out is a "thing".

The current covid crisis has made it crystal clear that the opinions and preachings of people who don't even think there is a crisis are entirely irrelevant.  What is not a crisis for them is a crisis for us.  Our nerves are frayed as we wait for what seems to be the inevitable bout of Covid, and we don't know if we will be one of the unlucky ones who become very ill.  So, we are on high alert right now, and for those people whose lives have been dominated by frequent hospitalizations and appointments with labs and dialysis machines, the future can look daunting.

We are pros when it come to taking special measure to protect our physical health.  We endure dialysis, transplantation, and all of the things that come with caring for ourselves.  The pills, the special diet(s), the lblood draws, the lab work.  It is time that we take care of our mental health, too, and the very first thing we must do is to ignore the nay-sayers, the "It will be OK ers, the "You should be grateful"ers, the "You made it this far because of healthcare"ers, and all of the other -ers who don't know bollocks about any of this stuff.  The last thing we need is the burden of other peoples' musings and pearls of what they deem to be wisdom.

Just say no.  They know nothing, Jon Snow.
Title: Re: Is burnout a "thing"?
Post by: iolaire on January 12, 2022, 10:41:17 AM
My direct manager at work from around 2005 was burned out at that time.  The manager has continued to be successful and is at about the highest level in our company that one could be.  That person although highly compensated and high in stature is in a constant state of burn out.  My role has basically been stagnate but is respected. Frequently I feel very grateful for how that manager has been a buffer and I've not grown into such a position.  I'm very happy I go home to my wife nightly and wonder how that persons relationship is with the child and spouse as they are on the road often, and always working very hard.

UkrainianTracksuit, I read your post in a similar light, of course you are happy to be alive and your life is medically successful, but that doesn't mean your role in the healthcare world is easy, and at times you might be challenged enjoy those successes because you are constantly busy helping those successes take place. I'm glad you are venting, this is the place.
Title: Re: Is burnout a "thing"?
Post by: UkrainianTracksuit on January 12, 2022, 12:27:16 PM
Thank you for your insights MM and iolaire.

You're right, as usual, MM. I need to stop talking to those that think they are offering wisdom. Family or not, I don't need to be lectured. Now I know not to share any personal thoughts with them. Something even as bland as, "Ugh, this appointment today..."

A part of it is that people do not respect me because I have not "checked the boxes" of what they deem a human being worthy of respect. It could be my (dwindling) youth (though I'm not a youth anymore) that makes them think my life experiences do not matter. And ya'll might not believe this, but I don't regularly whine, so how my few comments about life are now being perceived as drama, is just a daze to me.

I am not wallowing in pity or a sad person. I'm just tired. Tired is different than sad.

To be told "when you get X diagnosis, then you will learn that the things you talk about are trivial." How is that meant to be wisdom and not a complete dismissal? It's like, stop the deep insightful comforting thoughts there, Yoda.

Yeah, it is not cancer or cystic fibrosis or ALS, but lives were still turned upside down. Sitting in on discussions with vascular surgeons thinking up ways to create accesses so you can stay on dialysis — life support — is a pretty gnarly experience too. So that does not count? Others have been through such things here too and know the deal.

Just not engaging with "the wise ones" is key and I'll keep my burnout to myself.  :P

Iolaire, your take on this is really interesting as I never really looked at it through that lens. You do raise something that has truly hit home as well: quality of life and work.

There was a point in my life that I wanted a higher position and be a "big earner." But you know, and as you witnessed, bigger responsibilities mean bigger headaches. When I ended up in hospital due to overwork and my immune system went kooky, I realized that it is really not worth following that sort of path (for myself) anymore. Like yourself, at the end of the day, I want to be with those I love and relax or focus on something fun.

Like health and professionally, all I seek is stability and some sort of assurances. Health care seems to be like a job on its own sometimes when that success/security is sought. In "regular time", there are some things we can do for assurances (though nothing is 100%), and now the odds of that have decreased with variant after variant. Again, tired.
Title: Re: Is burnout a "thing"?
Post by: MooseMom on January 12, 2022, 03:17:32 PM
You've often spoken about how you supposedly haven't "checked all the boxes" as defined by family, so I understand how this mindset has been woven into your relationship with them.  They are not going to change.  This makes it harder to have a human "sounding board" that exists beyond a computer screen, and I am sorry for that.  I wish you had a bestie to whom you could whine to your heart's delight, all over a stonking big glass of your favorite beverage.  That feeling of having your concerns so casually dismissed, over and over again, can be soul-destroying.

Of course you're tired.  And when you're tired, everything feels so much blacker and bleaker.

It's pointless comparing dialysis, etc with cancer and ALS.  All of it creates suffering, vast suffering, and fear, and anger, and resentment, and still more suffering.  There are no grand lessons in life that one only learns by THAT much suffering.

In Canada, do you have access yet to the newest therapeutics like Evusheld and Sotrovimab?
Title: Re: Is burnout a "thing"?
Post by: UkrainianTracksuit on January 13, 2022, 03:49:05 AM
The moment that I was told "when you get X diagnosis, then you will learn that the things you talk about are trivial" is when I said "eff this, I am done." You're right, it is pointless to compare one from the other. It is all apples and oranges and quinces. It is not so much the idea of comparison, but it was the general dismissal, you know? Like, all the experiences in my life that had some impact on who (what?) I developed into mean nothing.

The lack of a bestie here is a problem, I admit that. And if better, I can take it off the computer screen as well and just go out and yell in the forest.  ;D

I know for sure that we have Sotrovimab locally because the hospital had a press release about it just recently. As for Evusheld, the last I heard is that it is still under review. Our local hospital is using up its beds quickly so the fact that there is an outpatient setting for the monocolonal antibodies is something nice-ish?! if something happens.
Title: Re: Is burnout a "thing"?
Post by: SooMK on January 13, 2022, 02:18:26 PM
UT, I completely get this. I have tried three times now to reply to your post and haven't been able to stay on topic. But I get it. I find I don't stay in this mind set very long. Hopefully you don't either. It's like a place I have to visit sometimes. I just get so tired of the endless doctors' appointments and out of nowhere ailments. Usually after awhile I get past it. I don't have a lot of family close by and none of my family members are snarky to me. (There's a few who I'm sure have things to say that I don't hear about, but that's ok.) The messed up US health system causes me more frustration than anything else. There's so much wasted time and money because everyone stays in their lane--even though the human body doesn't have a lane, it's a system with dependencies. And yet I'm lucky to have access to it. Years ago I started a job and I knew I was going to like my new coworker when she said, "The more you complain, the longer God lets you live." Always makes me laugh. Everyone needs to complain sometimes and it's nice if you have someone to listen to you and who will take turns so you feel you're doing your part. I think you're doing the best you can. Anyway, you have lots of company. Sending you the best.
Title: Re: Is burnout a "thing"?
Post by: UkrainianTracksuit on January 14, 2022, 07:05:50 AM
Hi SooMK,

I really appreciate that replied after 3 attempts. That does mean a lot and heaven knows staying on topic is often an Achilles' heel for the best of us!

Totally, I get what you mean in that it comes and goes, like it does with myself as well. This is just one of those periods. Having to book flights for my tx follow-up in a short while with Omicron up to its tricks is weighing heavy on me, and then these other appointments, and then that attitude person. But, I'll get over it.

The U.S. health care system does seem daunting to me, I admit that. We have a lot of "stay in your lane-ism" here too. It is absolutely maddening. It does not mean that we are ungrateful, it just means we see the areas where it could be improved.
Title: Re: Is burnout a "thing"?
Post by: kristina on January 16, 2022, 11:28:07 AM
Dear UkrainianTracksuit, I wholeheartedly agree with you about this feeling of "burnout" because for people suffering from any chronic disease a feeling of "burnout" comes along sooner or later, because we have to be alert 24/7 to make sure that we don't give anything bad a possible chance to happen.

For example, I have noticed recently some pain in my stomach, so I went to the doctor who told me to have an urgent Gastroscopy, which I had a.s.a.p.  and it revealed, that the pain is due not only to an infection but also an inflammation "thrown in" and needs to be treated instantly. Just imagine what could have happened had I ignored it?

... It just goes to show that "we" have to keep an eye on our health at all times, just in case, and of course, the stress of it all can create some feelings of "burnout"...

I have noticed that for me the best help against a feeling of "burnout-stress" is, to take every day as it comes and react instantly when necessary... easier said than done, but I continue to try my very best ...

I send you my best wishes from Kristina.  :grouphug;
Title: Re: Is burnout a "thing"?
Post by: fightingPKD on January 19, 2022, 06:48:23 AM
I definitely feel for you, OP.

I'm burned out of the world just in general.  Between all of the misery of the pandemic and all the people its harming (especially health care workers), the absolute horrific direction this country is spinning from it morally, and the fact I am still living on borrowed/pre-dialysis time.
I can't imagine being in your shoes with my mental state of mind right now.

It's all I can do to keep my head above water while continuing to delay dialysis myself for as long as I can.
Title: Re: Is burnout a "thing"?
Post by: UkrainianTracksuit on January 19, 2022, 10:20:11 AM
fightingPKD, I just gotta say that I feel for you as well.

That block of time of impending dialysis, whether it be long or short, is like a slow constant anxiety gut punch over and over again. I was in that "mode" for most of my university education and I am glad that I didn't have to go through a pandemic at that time. Probably wouldn't have been here to type this  :P

Take care of yourself, do the best that you can to prolong that first dance with the machine, and definitely take care of your mind. It is a tough spot to be in right now for you.

(And while I do not have to focus on the misery of the US of A, all this talk about a Russian invasion of Ukraine is doing my head and heart in, so I get this point too, although in another way. Sigh....)
Title: Re: Is burnout a "thing"?
Post by: kristina on January 19, 2022, 01:50:04 PM

(And while I do not have to focus on the misery of the US of A, all this talk about a Russian invasion of Ukraine is doing my head and heart in, so I get this point too, although in another way. Sigh....)

(Dear UkrainianTracksuit ... I remember learning at school that the Ukraine actually "feeds" the rest of Russia because it is the richest country with the most fertile soil ... and perhaps that might be the reason why there is no chance voluntarily given to the Ukraine to finally become independent ?)
Title: Re: Is burnout a "thing"?
Post by: UkrainianTracksuit on January 19, 2022, 04:13:38 PM
Hi kristina,

It is true that in the past that Ukraine was often referred to as the "breadbasket of the USSR" and even the "breadbasket of Europe", but things are different now.

(Though while on the topic of food supply, Russia itself has upped its agricultural production, exports wheat and other grains these days. Ukraine, while still fertile, lost a lot of its agricultural productivity, but that has turned more profitable in recent years.)

The situation now is much more geopolitical though with potential NATO expansion, future EU membership, and general "westward leaning" ideology (philosophy?) having a hand in it all. It is not about fertile soil at this point in history.

It is a heavy topic because I am of Ukrainian blood, from a Soviet military family, and married to a guy who has spent more time in the armed forces than civilian life at this point. So toss that onto the top of the pile of burnout. But this is something I can't do anything about   :lol; :lol; :lol;
Title: Re: Is burnout a "thing"?
Post by: iolaire on January 20, 2022, 03:25:11 AM
The situation now is much more geopolitical though with potential NATO expansion, future EU membership, and general "westward leaning" ideology (philosophy?) having a hand in it all. It is not about fertile soil at this point in history.
I'm appreciative you brought up Russia and Ukraine as its been a stress point for me for a while.  I'm aware of the Russian movements and worry significantly about it. 

The geopolitical world looks very stressed in many areas right now.  Now that COVID has sort of normalized in my mental world the worry of all-out global war is fairly high for me. Its hard to gauge if geopolitics worse than normal, but the Russia aggressive stance looks like something that could turn out globally very bad.  I'm sure from the Ukrainian side it looks even worse.

Since the insurrection in Washington DC last year I've followed this twitter feed, https://twitter.com/Osinttechnical right after the attack on the capital the user (who appears to be a student) posted a huge amount of information on individual people who attacked the capital and the efforts to scrape the social networks, and match videos to people. Since I've continued to follow it due to is coverage of defiance, security, geopolitical, and other global issue. That twitter feed reports on the various Ukraine situations including tracking video's of Russian troop movements and the like.  Seeing video's of trains full of missiles and all the heavy war equipment heading to the Ukraine border makes it look very real.  Now they are tracking the Russian amphibious fleet heading down the French/UK coast from the Baltic to Black Sea.

My stress continues as I combine that source with another random Taiwanese professor I followed during the Hong Kong protests and later takeover from China. I see the strong geopolitical stresses continuing from that area.  I also follow https://www.juancole.com/ publication which covers the mid east, Israel and the Palestinian people - the geopolitical stress/war in that area is still going strong.

Finally I had the pleasure of reading Ken Follett's newest book "Never: A Novel" which follows various global interactions/accidents tied to the US, China and North Korea and how those cause an escalation between the US and China leading to catastrophe.
Title: Re: Is burnout a "thing"?
Post by: UkrainianTracksuit on January 20, 2022, 08:03:45 AM
Geopolitics is something that kinda dominates our kitchen table so some days I would like to be abducted by aliens. It sure feels like we are in a dire place with so many potential flash points let alone enduring conflicts. Joys of living in an interconnected world with power rivalries and heavy weaponry!

Looking at all this stuff is partly what my husband does for a living. He was first hired as a risk analyst in the extractive industry but that work trickles in only when needed. His brain is like an encyclopaedia on this stuff.

Therefore, with this context in mind :P , it is not called "Russian aggression" but "defence of national interests" in this household. :P It is a much different narrative at home than what is on the media or most people on this side of the world say. So I don't really know where to turn with this sense of dread because I see the same photos/videos and read things on military family social media groups. His view is different.

It is one of those things I cannot do a thing about, but certain things like cutting RU from SWIFT (the so-called nuclear option) could have a personal effect.

I'll have to pick up that mentioned novel for my husband. :P It sounds terrifying to me but up his alley minus the thought of a female president.
Title: Re: Is burnout a "thing"?
Post by: iolaire on January 20, 2022, 08:38:07 AM
Therefore, with this context in mind :P , it is not called "Russian aggression" but "defence of national interests" in this household. :P
Yes I should do a better job about using neutral language on public posts like this.  I'm fairly cautious when mentioning China because I don't want to get pulled off a plane in transit in Hong Kong but neutrality is important all over...  Sorry I'm sure its WAY more stressful based on your background and household.

PS: the book has the Strong male candidate to counter the female president - I feel like it portrays that candidate in a negative light but I'm sure some will think the Strong male candidate had the right ideas.
Title: Re: Is burnout a "thing"?
Post by: kristina on January 20, 2022, 10:06:49 AM


It is a heavy topic because I am of Ukrainian blood, from a Soviet military family, and married to a guy who has spent more time in the armed forces than civilian life at this point. So toss that onto the top of the pile of burnout. But this is something I can't do anything about   :lol; :lol; :lol;

Dear UkrainianTracksuit,
Many thanks for your kind answer and I can understand your concern about the Ukraine. My mother’s family also originates from the Ukraine and since my great-grandfather was in a high-level official position under Tsar Nicholas II, family-members were warned and still had a chance to flee, just in time in 1917 … but nevertheless, they never stopped worrying about what could or might happen to the independent-freedom-loving Ukrainians … and so, I can understand where you are coming from …

Coming back to our thread of “burnout”, it seems that we are living through a very difficult time at the moment, not only because of Covid, but also because of so many “things” changing rapidly right now in front of our eyes, which creates difficult and immensely stressful situations and this again adds to this feeling of total exhaustion and burnout ...
Best wishes from Kristina. :grouphug;
Title: Re: Is burnout a "thing"?
Post by: UkrainianTracksuit on January 20, 2022, 11:58:05 AM
Well friends. there is at least some good news  :P. The Doomsday Clock remains at 100 seconds to midnight -- unchanged!

https://www.cbc.ca/news/science/2022-doomsday-clock-1.6321614

Think I'll pop a bottle of champs to celebrate that the world is in an awful vortex, but it didn't get worse.  :lol;
Title: Re: Is burnout a "thing"?
Post by: UkrainianTracksuit on January 30, 2022, 03:10:42 PM
So, I remember, almost a year ago, being on here, being viewed as too emotional about COVID (life standing still/passing me by) and I was worried, with COVID, I would not be able to visit a family member in time.

Well, indeed, he passed away on Friday. I just spoke with him on Thursday and things were normal. He was ill (CKD) obviously but really no "sign" that he was not be with us anymore in 24 hours.

We always spoke about how I without a doubt go to visit once it was safe to do so. It was mentioned at home at lease once a week that "I had to get there." Well, thanks COVID.

My husband and I went away for a short spur of the moment trip last week (ice fishing, ha) and I threw my phone when I got the news. Still feeling kinda numb and sick to my stomach a bit. I am not the only one in this world to endure such an awful feeling which is just augmented blah.
Title: Re: Is burnout a "thing"?
Post by: iolaire on January 31, 2022, 05:35:02 AM
Sorry for your loss.
Title: Re: Is burnout a "thing"?
Post by: kristina on January 31, 2022, 11:17:40 AM
Dear Ukrainian Tracksuit, I send you my sincere condolences in this sad time. :cuddle;
Please take great care and I send you my kind thoughts and understanding from Kristina. :grouphug;
Title: Re: Is burnout a "thing"?
Post by: SooMK on January 31, 2022, 11:25:53 AM
I'm so sorry.