Katybug Posted February 9, 2015 Report Share Posted February 9, 2015 Hi everyone! Much of the sentiment I am noticing lately, especially from new members, has been, understandably, full of fear or frustration. I thought it would be a good time to share, again, the best advice I have received since becoming ill. My former boss, having seen my significant decline in health and my frustration over not being able to do all the things I could do just 6 months prior, told me that "I needed to learn to be kinder to myself...To be as kind to me as I was to others."I want everyone, who is willing, to post one or two things they are doing or can start doing to be kind to themselves. I think this can be powerful for all of us.Here's mine:1) Listen to and believe my body when it is telling me something.2) Accept and love myself just as I am.3) Only allow and keep positive supportive people in my life Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 9, 2015 Report Share Posted February 9, 2015 I agree with your 3 things listed, especially #1.For me, I learned to let go of the guilt. The guilt for not showing up at things that normal family members would not miss, like a wedding,graduation or holiday event. I have learned to go when I think I'm able and to not go when I don't think I'm able. It is as simple as that. It was very hard to do. As long as I support the people in spirit is all that matters. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted February 10, 2015 Report Share Posted February 10, 2015 Katie, this is a great post. My doctors are always reminding me to be kinder to myself. I certainly am my own worst critic. I strive so hard for perfection, and have always have been that way, I guess I should have been built with an "off" switch.I work very hard now, every day, to remind myself that we all just do the best we can; as our health declines or something triggers a reminder of what we used to be capable of pre-diagnosis, I think to myself, "I wish I had the courage to go back and please ME, live the life I wanted to live and not the life that others had expected of me! I wish I said what I meant and not what I said. I really wish that somewhere, sometime along the line - I had taught myself how to be happy.Katie and Sue, yours were wonderful. Very courageous of you to share such personal information. To me that's one of the best things about DINET, there's a "Safe Place" here! Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 10, 2015 Author Report Share Posted February 10, 2015 Oh, Sue! The guilt! Yes, the guilt had to go!Sarah, yes, yes, say what you mean and mean what you say! And, I agree, this illness has really, truly taught me what it means to make yourself happy. Quote Link to comment Share on other sites More sharing options...
Snowtite Posted February 10, 2015 Report Share Posted February 10, 2015 Wow,What a great topic and reminder for us all! Ok what I am going towork on. 1) embrace the wheelchair and stop being too proud to use itwhenever and wherever it's needed- even the public bathroomsIn a tight squeeze2) my children still love me even if and when I have to be mommy from the floor. They have adapted so much better in many ways to my health changes. I need to imitate them.3) an amazing and supportive husband is worth more than 3doubting family members- thank and kiss him everyday- even when we re bothexhausted.Thanks Katy for starting this and everyone else for honestresponses. I needed this tonight ! ) Quote Link to comment Share on other sites More sharing options...
imapumpkin Posted February 10, 2015 Report Share Posted February 10, 2015 love this! Quote Link to comment Share on other sites More sharing options...
corina Posted February 10, 2015 Report Share Posted February 10, 2015 I have learned to be proud of me, the new me. And although at times I find it difficult I owe it to myself. I'm in the process of being best friends with me again (I was in my "former" life), I'm working on doing special things for myself as I deserve it and I have to say I ery much enjoy it. The special things can be really simple: buying a book I want to read, take the time to enjoy coloring and have lunch with a good friend when I can (in or out). Its like your former boss mentioned Katie, being as kind to yourself as you are to others. I needed to more or less accept my new life to be kind to myself. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 10, 2015 Report Share Posted February 10, 2015 Nice topic and replies!Trusting my gut and not second guessing!Finding out I'm the same person that I've always been just in a new formTelling people what I need/ want. Today that is taking the ER docs advice and staying home from work... Seriously best work note ever. He excused me for 1-2 days... My choice! I figured not a bad idea. First migraine ever. That'll go down in the ol journal Quote Link to comment Share on other sites More sharing options...
Becia Posted February 10, 2015 Report Share Posted February 10, 2015 Accept the tools given to help you be happy and safe, whether the wheelchair, the ramp into the house, the transport driver, or the PICC line that keeps you from nightmare ER visits.Be kind to yourself and don't accept mediocre care. You deserve treatment just like anyone else.Ask for help. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted February 10, 2015 Report Share Posted February 10, 2015 I think this is a wonderful post for new members like myself, I am just getting to grips with my diagnosis and accepting the lifestyle changes I am making to cope what that means for the future!I am only just beginning to learn not to apologise for everything I can no longer do!Accept what doesn't get done today will be done when I have a good day.On a good day giving my husband quality time , he deserves it. Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 10, 2015 Report Share Posted February 10, 2015 All of these are good points, and this thread was a good idea Katy. I have to have a hobby. I have to have something. I have given up some things, and will have to give up more. That does not mean that I cannot try new things, or modify some things that I did before. I have things that I enjoy tinkering with, and I do not intend to quit tinkering all together. If it comes to pass that I do have to give it all up, I will find something else. One of my biggest regrets is not appreciating some of the little things while I could. I would gladly go back and enjoy the worst of days. Much that bothered me then, would not bother me now, and just to feel ok in spite of it all would be great. What I don't want to do is continue making this mistake. There is a lot that I can still enjoy, even that there is a lot that I cannot. If things were worse down the road, I could easily look back to this time, and have the same regrets that I do now. I do not want to say too much, but I do not want to neglect saying what has helped me the most. My faith. Not the faith itself, but what I have faith in. Where I was "too busy" before, I have no excuse to neglect it now. For me, being good to myself, has become less about me, and more about participating in something much larger and more beautiful than what I can bring about myself. It settles much of my anxiety, fears, and depression. It by no means eliminates all that I struggle with, but it does put it into perspective, and makes it all worth it. I want to add that all of you should be good to yourselves. It would be difficult to find a collection of more brave, persistent, strong, and sober people anywhere. I hope that all of you continue to find ways to be good to yourselves, and have much to enjoy. In spite of the circumstances. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 10, 2015 Report Share Posted February 10, 2015 gjensen made me get out of bed to get my tissues. You guys are great! Quote Link to comment Share on other sites More sharing options...
Becia Posted February 10, 2015 Report Share Posted February 10, 2015 gjensen made me get out of bed to get my tissues. You guys are great!Me too. Now my mental health therapist will probably think I'm insane today, lol. Quote Link to comment Share on other sites More sharing options...
corina Posted February 10, 2015 Report Share Posted February 10, 2015 We are an amazing group, thank you SO much everyone! Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 10, 2015 Author Report Share Posted February 10, 2015 It's amazing all the little gifts this illness gives us. You are all amazing beautiful people! Quote Link to comment Share on other sites More sharing options...
Raisin Posted February 11, 2015 Report Share Posted February 11, 2015 Thank you for bringing this up! I have always tried to hold a philosophy of do no harm in this world. I am reminded by you all that this also includes me. I have always held very strong compassion for others but I can get mired down by thinking that I am more of a burden to others. God made me this way and I am on a journey just like everyone else. My journey counts too. My compassion needs to be extended to myself. Sometimes all i can do is pray and ask God to be with me and stand next to me. When I am very ill, I imagine an angel with giant wings covering me and protecting me. I am thankful that we are able to support one another. Thank you thank you thank you! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted February 12, 2015 Report Share Posted February 12, 2015 Gjenson and Raisin ALWAYS make me get my Kleenex! Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted February 13, 2015 Report Share Posted February 13, 2015 Thank you for starting this Katybug. And thank you Gjensen and Raisin for your posts. This is a great thread everyone. Quote Link to comment Share on other sites More sharing options...
srb Posted February 13, 2015 Report Share Posted February 13, 2015 When I first started reading this thread (earlier in the week), I was in such a discouraged place that the positive words of others didn't even break through. Long story short, I ended up posting something very honest on facebook about barely coping with chronic illness while also being a working mother. This was a first for me... had always been very careful and guarded about what I chose to reveal on there. I almost deleted it immediately; I was nervous and mortified. But what kept me from deleting it was my hope that someone would see it and it would help them be more kind or empathetic to another struggling soul. I ended getting some amazing, Kleenex-worthy responses, many of them from my awesome work colleagues.So I guess my way of being kind to myself this week was to be brave enough and transparent enough to show weakness/struggle. It's humbling, but empowering. And I have a whole list of comments that I can go back to and read now - plus a pretty good idea of who's "got my back," aka who I can turn to in the future. Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 13, 2015 Author Report Share Posted February 13, 2015 You all continue to amaze me.Srb- I'm so proud of you that you allowed yourself to be vulnerable and that allowed some people into your heart. That's what I hoped this thread would do. And, you were so brave to do it! Quote Link to comment Share on other sites More sharing options...
Raisin Posted February 14, 2015 Report Share Posted February 14, 2015 Srb, I am coming to learn that so many of us (even those not dealing with a chronic illness but also experiencing the struggles that life brings to us all ) put on a "brave face". Maybe the true brave face is the one that shows vulnerability, sadness, regret, fear, etc. at least to those with whom we think we can trust with those vulnerabilities. For instance, if I was with a friend and they broke down in tears or discussed their fears, I would be honored that they could trust me enough to express themselves. I certainly wouldn't judge them as I can get some powerful tears coming down my face as well at times! My anxiety can disable me at times just as bad as my Dysautonomia! my motto as of late is "everyone this side of heaven is struggling with something." I think that in my case, the more I try to squash what I am really feeling, the bigger the feeling becomes. It's like it gets stuck inside and then grows. So, you were brave in expressing your struggle. Congratulations! You rock! Thank you Katie for this topic. You rock too! ☺️ Quote Link to comment Share on other sites More sharing options...
srb Posted February 15, 2015 Report Share Posted February 15, 2015 Wow, thank you Katybug and Raisin. Your words mean a great deal to me.It didn't/doesn't feel a brave thing to do... I'm always afraid of being seen as a whiner or a weakling. But vulnerability and honesty is not really weakness. Knowing with whom to trust our feelings and struggles is the tricky part, I guess. It's harder after having bad experiences.I think one of the reasons I finally shared was for that reason you mentioned, Raisin, to try to stop the feelings of aloneness and embarrassment from growing any larger, to bring myself back from the edge of quitting. Another reason was to try to encourage people to look around them because there might be someone nearby who could use some help or encouragement.Sometimes I am acutely aware that all around me are struggling people. And I feel unworthy to share my struggles as a result. But I had one person on facebook tell me that it helped them to read my post, that it put their own problems in perspective. So I guess there are ways of sharing even difficult things that can help others! Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 23, 2015 Author Report Share Posted July 23, 2015 I'm resurrecting this thread! I feel like it could be helpful to the many new members we have! Some very powerful messages from our members here. It was a good reminder for me as well as I read through the posts. Quote Link to comment Share on other sites More sharing options...
Nymph Posted July 23, 2015 Report Share Posted July 23, 2015 Hi Katy and all,This is a very important thread. In fact I was just talking about this to a new member on my Sjogren's group.Some things I've learned:1) Don't push through those first days of a flare. Just do nothing. It'll make it better sooner.2) If you can choose between something you love and makes you happy (swimming) that takes a little more time out of other responsibilities, and something that just gets the job done (rowing machine), always go with the thing you love3) You don't have to live on a "normal" life schedule. So what if I'm still single and just developing my career at 36? When I am tempted to see myself as a failure, I have to look back and see the value in everything I've done and been through, even the time spent slogging through my health issues.4) If you need to lie down, just lie down.5) Confess your shortcomings and then let go of the guilt. It doesn't do a thing for anyone. Quote Link to comment Share on other sites More sharing options...
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