Bigskyfam Posted January 25, 2015 Report Share Posted January 25, 2015 Can you think of one major thing you've learned since you've become sick?For me it was slowing down. Still hard. :/ Quote Link to comment Share on other sites More sharing options...
Raisin Posted January 25, 2015 Report Share Posted January 25, 2015 I have learned to do what I can. If I can get out and laugh with a friend, I do. If I can't get out but I can move around the house, I try to knit a scarf for someone who has been kind or organize a drawer or two. If I can't get out of bed, I try to call someone to encourage them. If I can't do that, I pray for others and thank God for my foam mattress and my blankets. If I can't do that, I try to hang on and hold on to the hope that tomorrow will be better! Quote Link to comment Share on other sites More sharing options...
Raisin Posted January 25, 2015 Report Share Posted January 25, 2015 One more thing....I learned that my dog loves me and is always up for a good nap when needed! Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 25, 2015 Report Share Posted January 25, 2015 I learned to ask for help when I need it without feeling bad about myself for doing it. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 25, 2015 Author Report Share Posted January 25, 2015 Love our animals!!!!Asking for help that's a good one... I am one stubborn lady. Glad I'm not alone. Quote Link to comment Share on other sites More sharing options...
Becia Posted January 25, 2015 Report Share Posted January 25, 2015 that there are still good people out there, that do not think I'm just begging for handouts or help. That believe my conditions and have seen how they have changed me, and know when I need help before I ask for it. These people help me in so many different ways, and it's without desire for repayment (although I try to do things for them as I can, such as baking bread or sweets, or knitting and crocheting)... I was afraid people would only remember the pre-illness me and leave. Some did, but there have been a few that have stuck with me, and for that, I'm grateful. They are my family when my family left. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 25, 2015 Author Report Share Posted January 25, 2015 Becia. Good point.thanks for that reminder!!! Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 25, 2015 Author Report Share Posted January 25, 2015 I hate admitting it. My mom was right. Clean underwear a must! You never know when you may go to the ER. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted January 25, 2015 Report Share Posted January 25, 2015 That my husband is more supportive than I could ever have imagined Quote Link to comment Share on other sites More sharing options...
writerlymom Posted January 25, 2015 Report Share Posted January 25, 2015 Hahaha- Bigsky- clean underwear...I've learned a lot but I think the biggest is that I really don't know what's going on in other people's lives. Nobody looking at me or talking with me knows what I'm dealing with unless I tell them. So I figure the reverse is true for the people I encounter. It's made me more gentle. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 25, 2015 Author Report Share Posted January 25, 2015 Dancer I learned that too at the right time Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 25, 2015 Author Report Share Posted January 25, 2015 Ahhhh gentle. I can see how that would happen Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted January 26, 2015 Report Share Posted January 26, 2015 I've learned that one thing we can never get back is time. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 26, 2015 Author Report Share Posted January 26, 2015 Hubby and I chatted about this before bed. I have so many shoulda woulda coulda things that are to late. They can still be done. But in a different time/space/ place. I've been sick with pots for a while. Hard to look back and realize it. Quote Link to comment Share on other sites More sharing options...
corina Posted January 26, 2015 Report Share Posted January 26, 2015 Love this topic! I've learned patience and to NEVER give up! Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 26, 2015 Report Share Posted January 26, 2015 I have learned a lot. I needed and received a dose of humility. This experience has been humbling. Where before I strived to have it all under control, I realize that I have very little under control. The autonomic nervous system has a unique way of teaching that lesson. It is a big pill for me to swallow, but I am taking my medicine. Patience. I had no patience, believing that everything had to be done now. I am more sympathetic to other's health challenges. I cared before, but I can relate now. Small is just as good as big. My projects tended to take on a life of their own. They were never simple or small. I always complicated them, and was a bit ambitious. Now I look for ways to do some of the same things on a much smaller and simpler scale. Bigger does not mean better. The preciousness of time. I was too busy. I wish that I could go back, and had more time while I was able to do more. There is a lot of little things that I would have like to have done more of. There is some regret in this, but regret is a good teacher. Though not a kind teacher. Satisfaction does not come with what we do or can do. It is like trying to fill a bucket full of holes. It can't be filled, and we cannot be satisfied in that. In all of our inconsistencies, and the ever changing nature of this illness, the sun comes every day. The sun goes down every day. The birds sing every morning. For me, there is a simple reassuring calm in that. Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 26, 2015 Report Share Posted January 26, 2015 As a care giver I have learned many things from this illness.It takes away childhood. My son deserves better and so do all of you that are suffering with this chronic illness!I have more patience but not enough. I'm still learning and become frustrated when things go sour.When illness strikes, you must learn to expect some set backs. Tyler has a stomach bug right now and he cannot go to treatment today.It helps to research and to share it with your doctor.Be thankful for a doctor that has the patience to deal with your illness and will think out of the box!This illness is not in your head and you cannot control it.Be positive and listen to the patient's needs.Small improvements are giant steps to healing. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 26, 2015 Author Report Share Posted January 26, 2015 Guys I'm speechless and that says a lot. I love your posts and truly appreciate my new family here. Where are my tissues????? Quote Link to comment Share on other sites More sharing options...
bellgirl Posted January 26, 2015 Report Share Posted January 26, 2015 The one thing I have learned is that God is bigger than all of this, and he is with me and cares about me and you through it all! Quote Link to comment Share on other sites More sharing options...
Jon6945 Posted January 27, 2015 Report Share Posted January 27, 2015 I have learned just how little the medical field actually knows about certain diseases/conditions and also that our health is largely dependent on luck. Sorry if this was not as upbeat as some of the other responses but it is two of the very few things i have learned. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 27, 2015 Author Report Share Posted January 27, 2015 Amen Jon. Forget the old beastie boys song "you gotta fight for your right to party"... We have to fight for our health. It's been hard in my small town I was diagnosed here.. But see a big city specialist. There is tension between us all and shouldn't be. It's ok to not know... But come on and learn with us Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 27, 2015 Author Report Share Posted January 27, 2015 Bellgirl. You bet!!! 24/7 Quote Link to comment Share on other sites More sharing options...
Goschi Posted January 27, 2015 Report Share Posted January 27, 2015 I have learned just how little the medical field actually knows about certain diseases/conditions and also that our health is largely dependent on luck. Sorry if this was not as upbeat as some of the other responses but it is two of the very few things i have learned. Jon, this is exactely what I have learned. Couldn't have expressed it better - you put it to the point, word by word. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted January 27, 2015 Report Share Posted January 27, 2015 Jon and Goschi, I understand your frustration. It took me 13 years to finally have a diagnosis. I was wrecking my car, because of dizziness and vertigo, and I prayed and God answered. I found an ENT, Dr. Pappas Jr., and he did a thesis on Autonomic Vertigo, which is what I had. I did not know that he had this knowledge before going to my appointment. I had gone to many doctors for years, all the right ones, I might add, to no avail, so I feel your pain!! But Dr. Pappas referred me to The Autonomic Disorder/Mitral Valve Prolapse Center of Alabama, and Dr. Phillips is wonderful. I also have a Primary Care Physician, who is willing to work with me, so that I can be the best that I can be. I'm a retired RN, and I do a lot of research on my own, and even make suggestions. You are your best advocate for your health! It's been 3 1/2 years for me; I'm not cured but I'm the best that I can be. BigSkyFam...Everyday!! Amen. Quote Link to comment Share on other sites More sharing options...
srb Posted January 27, 2015 Report Share Posted January 27, 2015 I have learned that chronic illness will show you pretty quickly who really has your back, so to speak. Along with that, I've also learned to let go of the people who walked away because perhaps they weren't the best for me anyway or they just didn't have the capacity to understand/help due their own struggles.I have learned to be my own advocate and to persist in seeking help for the sake of myself and my husband and children.I have learned that chronic illness brings a lot of grieving with it. I have learned that motherhood is much more scary and hard now.I have learned how strong I am. Quote Link to comment Share on other sites More sharing options...
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