So in addition to all the pain, sleeplessness, weight gain, and loneliness, I have been experiencing severe Fibro fog. This is super odd for me bc before this diagnosis, those close to me would comment on the sharpness of my memory, now I can barely remember anything & sometimes that includes my wedding date, if I ate, did I take my meds, why did I get out of bed!!! It drives me crazy. Anyway, today my best friend (who is in medical school) told me that she has more reason than I do to forget stuff because she’s in school and so busy. I’ve tried to remind her that it’s part of Fibro but her not having it doesn’t make it as real for her everyday as it is for me. I was upset and offending by her comment and even more upset that she still didn’t seem to get it, after I explained it to her…AGAIN. I know she tries to be supportive and she has a lot on her mind, but so do I and I don’t want to keep explaining myself over and over again just to be further dismissed. Anybody been here before and have advice? I’d really appreciate it! Thanks!
Sorry about being offended by someone saying in her busy life she has more things than you do to remember. I don’t care for the comparison of a healthy person to a sick person. Perhaps you can get some good literature from a very credible site that your friend may get it as a medical person. Maybe from WebMD , The Mayo clinic, for example… Additionally ,as I also had a great memory and I dont now, I use a calendar, daily planner, post its,and note documents on my phone and reminders set . best of luck
HUGGGGGGGGS,
Suzie
Thanks Suzie for the encouragement and the suggestions. Those are very helpful and I have been finding ways to remind myself (setting phone reminders, and plenty of colorful post it notes)! As for my friend, I have given her literature and she has gotten some from the school she is currently at as well. So I have chosen to try to educate w/o snapping because it doesn’t help either one of us. That being said it hurts like hell but I’m grateful and so glad to have this site of wonderful and beautiful spoonies, like yourself, that can lend words of wisdom and support! Thanks by the way for responding bc it was really bothering me and I wasn’t sure if I should use this venue to get it off my chest but you have helped me to become that much braver by even just talking about it! Thanks a bunch. Hope to return the favor!
You absolutely can use this site to get it off your chest! Saves your loved ones always bearing the brunt, I think. For me, even with my own children, who I have talked to at length, and encouraged to do research on the Web, they still don't get it. That is hard for all of us, but something I have accepted now, people without just can't understand. You sound like such a lovely young lady, with a great attitude. I look forward to hearing more from you.
Thanks so much Anne for both the support and the beautiful words! I have to admit, I chuckled a little because my attitude isn’t always so good/positive. Today for instance, is a high pain day and so I’ve been mostly to my self. I’ve learned that me getting upset with the people I love for not understanding is harmful to all of us bc there are things that they go through that I can’t understand too! I’d rather keep them as the support system I need them to be and stay connected to this site and beautiful and encouraging people, like yourself, who truly know the struggle so that I’m not angry and disappointed and lonely all the time. Although short, it’s still been a trying time on myself, my hubby, and other friends and family members. I’m just so excited that I finally found you guys and reached out. I was in denial and fearful of not being understood or beings even as a “baby” bc I’m rather newly diagnosed, but in the last 2 days that I’ve been connected my spirits have been lifted and I’ve been able to release a burden from myself and my loved ones. I no longer feel o have to keep it together bc if I don’t my family won’t understand and it just feels great to finally feel accepted into something as opposed to having to prove how sick I really am. Thanks for being a part of that and I’m looking forward to continuing to recieve that support but also being that support to others that are truly in need.
Hi again Queenie,
I am glad you are a member of this site that I am grateful for making a new and lovely friend .I can feel and sense your sweet vibration. This is the best place to share, support, get info and to be friends with people who share these similiar illnesses. I often pop in and out of the chat room. Feel free to join the conversation there as well . you will feel and are very welcome. Just say hi. If you see to the left side of that page, ‘members online’ and you don’t get a response just know you are not being ignored. It may be that those members may be perusing the site and not necessarily in the chatroom .all the best.
HUGGGGGGGGS
Suzie
Thanks so much Suzie! Everyday, I am meeting new and wonderful people that support me and that I can offer my support to. Today, I learned the value of the chat room as I had a high pain day and it was my first since joining. Usually I don’t have anyone to talk to so I retreat but instead I logged in and saw some people in the chat! Although, my pain was still terrible, my spirits were lifted for the first time in a while bc I felt understood w/o having to “prove” how sick I am, applying for SSI, or explain my symptoms and why I’m not just at home vacationing. Thanks again for your kind words, warm welcome, & just for being awesomely you and helping me feel like it’s ok for me to just be me! Looking forward to much growth & friendship.
This drives me crazy too. I once couldn't find my cell phone and then my keys when I was out shopping and I had to back track for both of them because I didn't have them. I was in so much pain. I sometimes feel like I going crazy. I was riding in the car with my husband he said why did text me. I said I didn't he had the text on his phone but I have no memory of ever sending the text. It was crazy because he was in the car with me. Sometimes I wish they had a specialist for just these illnesses like fibro and others. Because I have had questions that a lot of my doctors can't answer. I wish I could find one. I was a very smart person and was not like this.
I sorry that you are having this problem with your friend. I wish I had some great advice for you to help you. I don't know if you could give her a short book to read about this and maybe that would help. IF you felt comfortable take her to one of your appointments. IF you hears things from another dr or both of you talking maybe that would help. Gentle hug to you. Take care
Wow Tina, I certainly know what you’re talking about because I myself have had instances like that myself. Nevertheless, they don’t get any easier to deal with or talk about so thanks for sharing! I know it’s bad but i don’t think my friend is ready to hear any more info, I think she truly believes that she has too much on her right now and I know it doesn’t mean that she loves me any less but she can’t handle it right now. Instead of me spending my spoons/time/energy trying to re-educate her now, I think I should take a step back to try to take care of me. Since the diagnosis, I’ve spent so much time trying to make everybody else understand and comfy, that I’ve been neglecting myself. One reason why it took me so long to reach out to a support group on the first place. Still love my friend and maybe in a different time and place she can be ready and willing to be the support I need but until then, I think I will back off. It’s so taxing trying to juggle my own stuff and pain and everybody’s feelings about my diagnosis and how I should be dealing. So I just won’t. I refuse to, it just stresses me out and makes the pain worse. Thanks so much for being the support that I was in such desperate need of!