Yes, I have a goal
Yes, I have a goal and did feel quite good about setting one here. I have thought for a week to drop a note about this. I have something to share in relation to my goal of repairing relationships. I have planned to contact sister #2 by phone because last time we talked back in October she asked me to call her and keep in touch. We have been so very close all our lives but especially the last 14 years, she became my very best friend after my close, forever friend of 17 years walked out of my life and took her friendship away. That is another story for a later date. She is my music buddy and scrabble partner, I loved staying at her home just past Denali in Alaska. We would bust out the guitars and sing all day, then bust out the Scrabble and play till 3 in the morning, then get up with the kids put the coffee on and start on the Scrabble again while Od'ing on coffee with yummy creamer. Well, this sister came to visit the family in Arizona last February and I was thrilled to see her but only disappointed that I wouldn't be able to get up and go do things with her. She is a bit harsh on me about my health problems but better than the rest of them. She states my doctor is misdiagnosing me and I couldn't have ALL these different conditions/syndromes/diseases. I got angry with her once when she was here because she downplayed my suffering and that all of us have pain and blah, blah, blah. I told her clearly she does not understand and I'm done talking about it. So, when we talked on the phone last she uses this tough love kind of support and says, WELL WHAT ARE YOU DOING TO HELP YOURSELF?? with a firm, stern voice. I said, 'listen, I have tons of pain and the sweats right now, I gotta go'. My goal was to call her though there isn't any real repair needed in our relationship like with the other 2 sisters. I was pissed about her insensitive, tough love approach with me. I'm thinking that when I call her of telling her I have no interest in discussing my pain issues. A changed relationship is what we have because I got sick, I suffer, I cannot work and have almost no energy. Why would family react this way to those of us in conditions of severe, chronic pain and out of this world fatigue? I hope for some ideas, suggestions and any feedback here. Thanks, Sherry
Replies
I think you have the right idea to not talk about your health with your sister any more. Maybe you can steer the conversation onto pleasant memories of the past. I am so sorry you are not getting the support you deserve and need. Just know I am here for you and I understand as much as someone can who doesn\'t have your health issues. Hang in there!!
If they could only walk in our shoes for a day they\'d sympathize real quick. But I do think you have the right idea. To keep the peace just don\'t talk about your health when you\'re together. Not only will that keep things peaceful but also will keep your stress levels down. It\'s sad when we can\'t get the support we need from our family. Hang in there my friend!!
Much love & hugs, Donna
you like me have decided that people are generally good and doing what they need to do to make their lives good for them.we do suffer a great deal. People know that if Mention my pain that I am really hurting. I know people get tired of hearing about it so i just dont bring it up. which is hard for me however I guess if Im making them uncomfortable, Its my job to stop it. I lost my friend who I could tell about my pain. Someone asked me how badly it could hurt when i just go and go sometimes. I said Usually I feel as though someone has beat me up with a bat. they recoil like i wounded them. Well that is how it feels. Some weeks i do nothing but lay in bed and pee. I even have to have someone just come over and feed my pets. I love you and you can complain tome anytime you want and i will accept it and give you empathy.
Thank you all for your replies. I know I am not alone in this. Most people who suffer bad chronic pain have zero support from family, especially us with Fibro. We don\'t look sick, there\'s never been enough information out there on Fibro, I printed the \'letter to normals\' and info on Fibro but nobody wanted to read it. That was a couple years ago and I decided I will not try to help anyone understand anymore. I am gossiped about in the family and blamed for being sick. I rarely say anything about how I feel for at least the last 6 months. This sister brings it up like she can help me get motivated with this whatever kind of support she\'s trying to offer me. Donna I have often used that analogy about the bat. You must have Fibro too. I will complain to you when I need to and thanks so much for the offer. Thank you Steve and the other Donna for your comments. You all are so good to me. I appreciate it.
HONEY........I AM SO WITH YOU! ONCE A GOOD THERAPIST SAID TO ME, \"EVERYTHING IN THIS WORLD COMES DOWN TO CONTROL!\" WE FEEL, MYSELF INCLUDED, IF WE DO NOT HAVE CONTROL, WE ARE OUT OF CONTROL.......PEOPLE, AS YOU AND I WHO HAVE HAD OUR LIVES DRASTICALLY CHANGED, I FEEL HAVE PRETTY MUCH CAME TO THE CONCLUSION THAT WE HAVE \"NO CONTROL\" WHEN IT COMES TO THIS SEVERE PAIN...NO ONE HATES IT MORE THAN US. OTHERS DO NOT UNDERSTAND THIS AND HAVE NOT REACHED THIS POINT OF ACCEPTANCE! FOR EXAMPLE, MY FAMILY/FRIEND ONCE SAID TO ME, \"YOUR NOT THE SAME ANYMORE!\" THIS HURT ME SOOOOO DEEPLY.
MAYBE MY OUTER APPEARANCE ISN\'T THE SAME, BUT MY HEART IS AND HAS BECOME SOOOOO MUCH MORE KIND. CAN THEY NOT SEE THIS?
NOT ONLY DO WE HAVE TO DEAL WITH PHYSICAL CHALLENGES, WE HAVE TO DEAL WITH FAMILY/FRIENDSHIP CHALLENGES! I DO HAVE TO ADMIT, BEFORE I BECAME SICK, I\'M NOT SURE HOW MUCH \"TOLERANCE\" I WOULD OF HAD FOR SOMEONE IN MY SHOES....I\'M WORKING ON ACCEPTING PEOPLE WHERE THEY ARE (INCLUDING MYSELF) AND AT TIMES, IT IS VERY DIFFICULT WHEN IT SEEMS AS THOUGH NO ONE UNDERSTANDS OR CARES! THAT WHY YOU AND OTHERS LIKE YOU HAVE BECOME SO CLOSE TO MY HEART!
I CAN REMEMBER SOOOOO MANY STATEMENTS MADE BY OTHERS: MY FAMILY MEMBERS, MY M.D., MY CO-WORKER\'S......THEY ALL KNEW WHAT I SHOULD DO AND WHAT WAS BEST FOR ME......WELL, GUESS WHAT, THEY DON\'T! YOU, MY DEAR SHERRY WILL FIND YOUR WAY AND I AM HERE TO SUPPORT YOU 100%. IT\'S NOT ABOUT TURNING OUR BACK ON OTHER PEOPLE IT\'S ABOUT LOVING OURSELF ENOUGH TO TAKE CARE OF OURSELF. I JUST HAD A WONDERFUL \"CRY\" THIS MORNING AS I ONCE AGAIN, AM FEELING A LITTLE SORRY FOR MYSELF...EVERYONE IS GOING AND DOING (AS I WOULD LIKE TO) BUT, THEN I STOP AND REMEMBER \"CHRIST-MAS\" IS IN MY HEART! ALONE AND IN ALL THIS PAIN, ISN\'T IT A GIFT TO HAVE THIS AWARENESS!
I LOVE YOU AND HAVE NO IDEA IF THIS MAKES SENSE......BUT I AM SENDING IT ANYWAY! YOU ARE \"ENOUGH\" SHERBEAR JUST AS YOU ARE.
YOU ARE FILLED WITH HOPE MY DEAR!
VICKI
Vicki thank you for your \'letter\' ; ) , I finally accepted my life as it is and got realistic about my limitations from the pain and fatigue. I finally accepted that this has caused me to lose everything. At this point my family members still do not accept it but mom tries sometimes, stepdad tries and my daughter is learning about these pain conditions in massage therapy school and finally tries to be physically helpful to me and talks about the Fibro, ddd, djd, nerve pain and Arthritis with me, she brings it up in conversation. Thank God she decided to be a massage therapist as it is helping our relationship immensely. I appreciate your support my friend. Let us have hopeful hearts. : )
I\'ve been on both sides of that myself. Being so down and out and trying to tell people of my misery and then feeling like they either didn\'t care, were to busy enjoying a normal life that they just didn\'t have time to listen to me. I wanted sympathy I guess, maybe even a little love. I thought I was going to die, wanted to make them feel like I was going to die too so I would know what their last words to me would be, if they really cared or not. But they never were able to relate to what felt like terminal suffering and trying to talk them only made me feel lonely and unloved on top of feeling so deathly sick and weak.
Then when I was better and somehow survived it all my Grandmother at 86 was in the nursing home. She suffered terribly many days, they kept her on pain pills but it wasn\'t enough. She told me everytime I talked with her how badly she felt. Many times I did not really know how to respond. I tried to give her sympathy and told her over and over how much I loved her. But no matter what I said it didn\'t change what she was going through. I look back on it now and think that when I was suffering so much would it have really helped me that much if people had said what I wanted them to say? If we are suffering, we continue to do so no matter what anyone else does or doesn\'t say. If we find a sensitive person to talk to that will feel our pain and give us sympathy it still doesn\'t take our pain away. It only makes someone else suffer also.
My Grandmother told me that I was the only one that she could talk to about what she was going through because no one else seemed to understand. Maybe I did help her, as least she new someone cared. Although I never felt like my words were able to releve any of her suffering and I just felt really really bad for her, she at least knew I cared.
It\'s a hard thing if you are the person suffering or the person caring about someone who is suffering, you worry about them all the time, you don\'t really know what to say sometimes. My Grandmother knew her time was almost over, she was saying goodbye to me. But for the rest of us who are younger there is always a chance we could recover so now I realize that most of the time people just won\'t be able to \"feel it\" unless we are 90yrs. old they won\'t believe you are that bad off most of the time. So I would just tell God about it instead of talking about it to people. He\'s the only one that can really do anything about it anyway.
Personally, I don\'t want sympathy nor expect anyone to do anything about my suffering. I just don\'t care to be rejected by family members because my health went downhill and I am not the strong Sherry everyone knew before. I just don\'t care to hear the mean words that blame me for developing DDD, DJD, bulging and herniated discs, stenosis, sciatica, neuralgia and Fibromyalgia. I would like to be treated with some respect whether I am strong or weak. When my mother got RA severely I tried to listen and help. There are people like that such as my 2 real life friends. I don\'t seek anything from them but they try so hard to understand and help me and for that I see them as angel friends. Thanks for your comment Annie.
Geeze anyone that would treat you like that with such disrespect and coldness while you are feeling so bad has problems. I can realate to that though, I had family that treated me that way, they were enjoying life and my troubles were just an irratation for them to listen to. But they continued to ask me how was I doing, it\'s funny thinking back about it now. I think they just asked me how I was doing because they wanted to know when I would shut up about it. These were the same people that when they got sick I ran to help them, gave them money, got their groceries, took them to doctors etc. I never asked for help back just wanted, like you said to be treated with respect instead of being treated as an irratation or something. I\'m glad that your daughter and you Mom are sensitive you what you are going through.
did you ever get the flector patches?