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Written by
Bet117
NKF Ambassador
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Always so good to see you Bet117! Its been a long, long while since I have been on this cite but I just saw your notification in my email and as always another great considerate post! Your reminder is such a great mediator! You present to us guidelines, the leadership, whose symbol acts as the calming in the room, when others who get emotional or excited, which (although is common the last 5 years outside our own community out in the political divide) for our own society of patients, who are already dealing with incredible physical pain and the mental anguish anyone ill endures, being emotional or excitable it is quite normal and expected when dealing with all we do. It is in our community especially, whose reminder above, will really help people gauge how they are feeling, what stress level they are under and what impact on their own body their arguments is having. Once someone can realize that, it may help them realize what is happening when they are typing. Its difficult with typing as tone and voice aren't heard. I, myself, am a talker and find the new age of typing more difficult. Talking allows people to see and hear each other and gather more appropriate knowledge to others intent in reactions. I think this is a very thoughtful post, and in this case typing will be beneficial, because it will make people who read this, in their own privacy and on their own timetable, take a step back, take a deep breath and get a clearer picture around their own situation and atmosphere. It will give them more time to see or adjust their mindset as opposed to reacting in the moment. I know for myself reacting has become habitual when in pajamas on a laptop in my own home or in hospital as opposed to being fully dressed out at the mall or at work (which I have not been in a decade). I, when mentioning this above, purposely noted the outside political environment, because with all we, in our own community, have to deal with on a regular basis, the outside healthy community who chose to engage in arguments for personality, to relieve their own stressors or what have you, are not dealing with the pain, endless overworking of the body's systems, or fogginess and poisoning, which kidney disease does do to our blood and organs. We are already in an abnormal state speaking in terms of physicality vs health. I think any statement that can provide clarity and leadership to us, is a great way to bring people back into perspective, so they step out of whatever disheartening communication they are engaging in and reassess. In other words, take a deep breath, chill all, and come back to post later. Ha Ha. Our health comes first. The whole world is under enormous strenuous times in this world wide pandemic, but none more than our population, because it affects us directly. We are already dealing with the outside populations not adhering to the precautions, which impact us the most. We don't need their added stress, but they have brought theirs to our community through the incessant aura of politics and through their neglect of our humanitarian needs, which we see or hear on the news or where ever subliminally in this climate we have been in. We don't even have to realize it to know that added stress effects our bodies. That only compounds the current communication in own arguments. Collectively as an entire society, I believe the toxicity in the air brought by all others has not been fair to patient populations. I use the adjective as patient, because I don't refer to us as a weaker population, when clearly we are way more stronger than the healthy if we have to deal with their stuff on top of our own. I would think that would be reversed. So, hopefully people will see your post, put their own health first and can calm down in the heat of the moment they are in with whomever. We deserve way more than the added worry, stress, pain, and anguish we have been under the last 5 years politically and this past year with COVID-19. Hopefully, we can remember that we are on a website and what is happening is not in front of us with others we know personally in our home or health environment. Then we can breathe easier and realize the tunnel vision pain brings. We don't have to take what strangers say on a website that personally. Also we don't have to take out our stress on strangers dealing with similar pain either. That will help each one of us, once we realize that. That is not easy to see. It took me until the few moments I feel better to remember that. Yet if we can understand that we are in that fog and its very hard for us to not feel in pain, or not be irritable, maybe we can go to this post above or make it a sticky and it can help remind us or guide us the next time we encounter an argument. We do deserve a brake, a help to guide us to say "Hey, listen someone interject and speak for me because I can't do it." Reading the guidelines can be that symbol of a person. Being a patient I am by myself. I to this day don't have anyone to translate for me or speak on my behalf when pushed over the edge. Its not like when I was perfectly healthy and always had that extra to roll things off my back. We are fighting for our life. We are in this battle of fighting pain together not against each other. We can leave those battles and that stress to the healthy ones out there fighting politics. Ha ha. I know for myself how hard it is to communicate or argue in all that pain. It wasn't until I got a break this year that I start to get some sort of tiny glimmer of awareness of what all my years I have been dealing with has brought to me. I do remember who I used to be and I remember how I have been treated the past decade and how I have treated others. I do know I would have handled it better like I always did in public, but I am not that person anymore. I am not in public anymore. That's hard when others don't see that nor do they care, yet expect that I should be able who I use to before all of my own hell. We as patients, I believe, don't get the break we deserve from the systems around us. Perhaps we can give each other more of one. We don't have others to see us as ourselves, they see us at our most intimate selves in the public health system. The general public gets to go to work, fight or stress over battles on the road or subways or coworkers whatever. Yet they are still healthy. They can breathe, they don't feel like this. They don't stress like this. They are not naked in public, which for myself as a patient, I often felt like. On dialysis and during my transplant, I felt as thought it was like I was left naked on the street of NYC and had nothing but cars and people run and walk all over me. With a central line in my chest on hemo, not being able to shower or wear a bra in public, healthy strangers don't have that added worry when they argue with strangers who pass by. We argue in our pj's from a laptop or phone at home with strangers. Those on city street are dressed, able to walk and move on by more easily. I found my experience in healthcare was very intimate, yet had the least privacy. I find it ironic its opposite with those who are argue in public who are not in our pain. Yet we are dealing with their added aura of stressors. We don't get a break not for 24 hours, not for a week not for months or even years. Its endless. Our own stress is enough. Our community is Ours. We have to try to remember we each are all going through some kind of pain. I think your post suits many different roles than what you may have intended. I see the guidelines you post as analogy. It reminds me of attention, a helping hand, someone to interject on my behalf, that, I myself was never given. Its like someone giving me a break saying, "Hey, take a deep breath, relax and when you do, take a look around you and perhaps you will be able to think more clearly once you rest and see where you are. " I think how you put this post allowed for that type of theme. I see your post as a way for others by themselves on a laptop in the middle of the night being able to have something interrupt their thinking so they can a chance to reach outside the bubble, calm themselves down and regroup. We are not a typical forum, or population, but we are people and we are all enduring immense pain. We have to remember that. Wishing all good feeling days.
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