I wanted to ask members how they have helped themselves move into accepting this illness and the symptoms that come with it.
I feel I am on a better path toward acceptance, but I still have my days. Lately, I have been acknowledging when my body needs rest and giving in to that need whether that be a short nap or going to bed early. I have also planned a "stay home" weekend this coming weekend to allow my body time to rest and prepare for the busy holiday Thanksgiving week coming up! I will nap and rest my to my heart's content this weekend : )
Last night though, I had a severe pain attack around 12:15am and I still find it difficult to accept this illness and not fight it. Fighting it makes it worse. It is difficult to keep up with life demands, work and home demands AND to be so young. I see what other people my age can do and it makes me angry that I can't do the same things at the same pace. Even though I know fighting it makes it worse, I still do it a lot of the time.
I'm open to feedback and suggestions regarding what has helped people and what the changing moment was for them to move into acceptance.
I used to fill my calendar with everything I could think of and then ask myself what one other thing could I do. I was the type of person that would NEVER stop, and I hardly ever slowed down! Think of the energizer bunny commercial, THAT WAS ME!
I can't do that anymore! I've had to slow down and smell the roses so to speak!! It takes some getting used to, but your body will thank you for it!
The way I look at it: If I want to feel my best, then I have to take it easy, do what I can and DON'T push it!!! Hope that helps you!!!
Hope you and your family and friends have a FABULOUS Thanksgiving!!!
Thanks Woolybear! : ) The part I'm having a hard time with is the "slow down" piece. My body wants to slow down but my mind keeps pushing me to do more. I don't want to slow down, if that makes sense. I'm having to adjust and find a way to find a happy medium. In my mind, I am still this healthy, go-getter person that I used to be, but my body isn't on the same page. I'm trying to combine my mind and body to have a happier experience. It isn't going over very well. They are constantly battling eachother.
I'm with you! I know what that feels like! Been there too many times!! It took me almost 3 months to get used to the "new normal!" It takes time and it's not easy!!!!
Hang in there, it will come.
Hi Sara. I feel your pain. I have hard days too and have my own bouts of depression. I think about it this way… My body is on permanent vacation, meaning no more aggressive activities, gotta kick back and relax. That is my normal now and the permanency of this condition does make me depressed, but I am happy and grateful for this body-inspired restriction. I just have to go with it and enjoy this prolonged vacation. I will have painful days and I will be sad that I cannot do stuff but the last thing I want is to make other people and loved ones around me feel the same way I do. I do not want them to pity me and have to take care of me - cause I am not there yet. I am not weak or incapable. I am strong and relaxed. I am able to take my time, rest, and relax. I do not care what other people think of me cause I am on vacation. I go to the store without makeup. I go to yoga and wear sweatpants cause I cannot afford yoga pants. I haven’t been up against a situation that this mentality doesnt help with. As long as I can pay the bills and eventually get back to work, its all good. I used to be type A and that is not compatible with vacation so I am changing.
I hope this helps. My thoughts are with you Sara, I think I relate to you the most and I am glad that to be here to help. hugs Be strong, enjoy this “vacation.”
I totally understand the trying to get use to this illness I’ve had it long time and still struggling X
SaraZ553 said:
Thanks Woolybear! : ) The part I’m having a hard time with is the “slow down” piece. My body wants to slow down but my mind keeps pushing me to do more. I don’t want to slow down, if that makes sense. I’m having to adjust and find a way to find a happy medium. In my mind, I am still this healthy, go-getter person that I used to be, but my body isn’t on the same page. I’m trying to combine my mind and body to have a happier experience. It isn’t going over very well. They are constantly battling eachother.
Thanks Heather! I like that visualization of being on vacation. It kind of gives a little hope that we won't have to be on vacation forever either and things could get better AND we will have better days ahead like there always are. There are always days where we feel better than others and I try to keep those in mind when I'm in so much pain, like today. The medications are barely even touching the pain today and I've taken as much as I can take as prescribed. I know this day will pass, and I will have many good ones in my future. I'm starting to think bouts of depression are going to be a regular part of this journey that we have to cope with and learn to navigate through. It's hard, when you are in that moment of despair, to pull yourself out.
Thanks for the kind and supportive words. It means a lot to me.
Sara
Meow said:
Hi Sara. I feel your pain. I have hard days too and have my own bouts of depression. I think about it this way... My body is on permanent vacation, meaning no more aggressive activities, gotta kick back and relax. That is my normal now and the permanency of this condition does make me depressed, but I am happy and grateful for this body-inspired restriction. I just have to go with it and enjoy this prolonged vacation. I will have painful days and I will be sad that I cannot do stuff but the last thing I want is to make other people and loved ones around me feel the same way I do. I do not want them to pity me and have to take care of me - cause I am not there yet. I am not weak or incapable. I am strong and relaxed. I am able to take my time, rest, and relax. I do not care what other people think of me cause I am on vacation. I go to the store without makeup. I go to yoga and wear sweatpants cause I cannot afford yoga pants. I haven't been up against a situation that this mentality doesnt help with. As long as I can pay the bills and eventually get back to work, its all good. I used to be type A and that is not compatible with vacation so I am changing.
I hope this helps. My thoughts are with you Sara, I think I relate to you the most and I am glad that to be here to help. *hugs* Be strong, enjoy this "vacation."
I totally understand the trying to get use to this illness I've had it long time and still struggling X
SaraZ553 said:
Thanks Woolybear! : ) The part I'm having a hard time with is the "slow down" piece. My body wants to slow down but my mind keeps pushing me to do more. I don't want to slow down, if that makes sense. I'm having to adjust and find a way to find a happy medium. In my mind, I am still this healthy, go-getter person that I used to be, but my body isn't on the same page. I'm trying to combine my mind and body to have a happier experience. It isn't going over very well. They are constantly battling eachother.
Hi, Sara, I just wanted to send along some further encouragement. Working uphill towards acceptance is really great! I found acceptance to be the hardest part of my diagnosis. Once I got that settled with myself, I shifted focus towards coping and thriving!
Thanks! I appreciate the encouragement...this weekend was a hard weekend. I rested most of the weekend, but still had pain flare ups throughout Saturday and Sunday. I think when the flares are at their worst is the hardest time to accept this illness. It is so frustrating that it limits my ability to do things, but more frustrating when I am in pain and there is no relief with the medications I am taking. Most of the time my meds work to make it tolerable, but sometimes the meds don't even help and that is when I struggle the most.
Sara
BaltimoreBaby said:
Hi, Sara, I just wanted to send along some further encouragement. Working uphill towards acceptance is really great! I found acceptance to be the hardest part of my diagnosis. Once I got that settled with myself, I shifted focus towards coping and thriving! :)
