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Post-Intensive Care Syndrome (PICS) - Let's talk
Have you heard of Post-Intensive Care Syndrome? Sometimes it's called post ICU syndrome or PICS. PICS is defined as new or worse health problems after critical illness. These problems can affect your mind, body, thoughts, and/or feelings.
On Connect we would like to bring together people who have been affected by critical illness, and hopefully lighten the burden you bear. Patients and family members welcome.
Grab a cup of tea, or beverage of your choice, and let's chat. Why not start by introducing yourself?
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HugInterested in more discussions like this? Go to the Intensive Care (ICU) Support Group.
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@rckj, Perfect! You are a quick learner!
If you would like more help on how to use Mayo Connect, you can scroll to the bottom of this page and click on "Get Started on Connect" in the first column.
Like you, my local facility knows me and that helps a lot.
My experience is pretty much limited to liver/kidney transplant. I am still eager to communicate with you, but I wonder if the Diabetes and Endocrine Group might be a starting point for conversation related to you specific condition?
https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/
I hope that you continue to make steady and progress. Remember that slow progress is still progress!
Rosemary
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1 Reaction@rckj, You are way beyond my experience! I have never been asked anything like this before. I am retired with the luxury to stay home and to simplify my activities. I certainly can feel your struggle.
I would like to invite @JustinMcClanahan, @lisalucier, @andreab, into this discussion. They might have some information or resources to share with you.
@rckj, You are a gift to your patients.
Rosemary
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1 Reaction@rosemarya, thank you for your kindness and help. That by itself is an extraordinary gift to me.
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2 ReactionsHello @rckj,
Thank you for tagging me Rosemary. Although we may suffer from different ailments, balancing my conditions and work, school, and social life has always been a challenge for me. I was born with a rare genetic bleeding disorder called Hemophilia - the main issue is that my blood does not clot on its own without intervention and medication. Growing up, I would often miss school due to internal bleeding issues in my joints. Those bleeding episodes led to joint damage that required joint replacements. I missed large chunks of school in college and had to withdraw many times. I have always been trying to balance the real world with my real health issues - often returning to whichever endeavor I was on at the time far too early.
I've now learned that health comes first and there are ways to still be both successful and productive while taking care of yourself. I try to create small lists when I am in the middle of a health issue of things that are more easily accomplishable. I progress to things that are more challenging as I am getting better. I also have learned not to push myself as hard so that I don't get to the point-of-no-return injury wise. Most importantly, I've learned to give myself a break - both mentally and physically. I've learned that it is OK to feel bad for yourself from time to time and use that as motivation. I just don't let a bad day become two bad days then a week, month, year, etc..
Since we are all so different, I hope this has helped in some way. We all may have different reasons and causes of the battles we are fighting, but the battles themselves are all similar. Good luck and know you are in a good place to get support,
Justin
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3 Reactions@JustinMcClanahan, Thank you for sharing your challenges in life. Your advice is tremendously helpful to me. I have always had large, impossible to achieve lists of tasks to be done and have always felt defeated by my lists. For some reason it had never occurred to me to break it down into more manageable pieces. I tend to overdo and then get sicker and feel defeated. One day of defeat stretches into a week or longer, like you described. Since any form of stress makes my adrenal illness worse or can precipitate an adrenal crisis, this is self-defeating behavior for me. I understand it now but am unsure how to change it. I think I need to ask for more help from my husband, family and friends. I tend to try to tough it out rather than asking for help. I’m still working on that one! Thank you for sharing with me and I appreciate the help greatly. I guess I have to think about what the next steps are to change things. I think I keep wishing I could do more and sometimes I can’t. Maybe the key is acceptance and continuing to do what I can as much as possible. I guess I’m just thinking out loud but it’s starting to make sense. Anyway, thank you for your help and kindness. Best wishes to you with your health issues and in your life. I look forward to any further discussions we might have.
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2 ReactionsWhen you say, "I think I need to ask for more help from my husband, family and friends. I tend to try to tough it out rather than asking for help," it's like you are speaking through me! I struggle with this to this day. I equate it to be stubborn, I like to battle and defeat things, but sometimes you get in too deep and you only do yourself harm. That is a hard line to walk. We sound similar in our actions, even though our ailments are vastly different. We can't achieve change over night, so make sure to cut yourself some slack along the way if you have any setbacks. Feel free to reach out.
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1 Reaction@JustinMcClanahan, I think it’s stubbornness for me too. I’m used to being the supportive person to others and struggle with accepting much needed help from my loved ones. Trying to reconcile independence and competence with allowing room for help and guidance. It’s a big step for me to be writing on this forum. I’ve really never done this before! The help at home is there and more than willing, I just have to learn acceptance. Not so easy as it sounds. Thank you for your openess and help. I do feel much less alone in this and wonder now if the aloneness was of my own making. Small steps forward, as you suggested. Thanks again. I’m here if there is anything I can do to support you.
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1 ReactionI used to have a boss, the CEO of the co. I worked for and he always maintained that his to-do list was never excessive because if you can not finish it, you will be too defeated to even have one the next day. I always tried to work mine out for what I thought would take about 6 hours of my work day and we worked 10. If I finished on time, I could actually do something I enjoyed which was interacting with my employees. If I got interrupted and things didn't go as planned, I still had a fair chance of completing my list.
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2 Reactions@gman007, Thank you for the advice. I greatly appreciate it and it is helping me formulate a more realistic plan for myself. The thought of finishing a practical, realistic list in the time frame and still having space for other things sounds wonderful! I have so often felt defeated that your advice and example really hits home for me as a solution to those feelings. Thanks so much.
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1 Reaction@rckj, I had to learn that it is okay to ask for help. In fact, I learned also, that friends and family are thrilled to be asked! That can make it easier to accept.
Rosemary
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2 Reactions