When is enough, ENOUGH!? I was diagnosed with fibro in 2010, after several years of wondering what was making my body hurt so bad. Then, of course, came the condescending, disbelieving, etc remarks, some even came from friends & family members. I always thought these were the people who loved me & were supposed to support me in hard times. But I’m sure anyone suffering with fibro knows this story all too well, right?
To shorten my story, the other layers & frosting on my “cake” turned out to be osteoarthritis in my knees, breast cancer, & now I’m facing total knee replacement surgery.
There is much stress on my marriage, hurtful things being said, my 16-year-old daughter wishing for a mom who can be more active in her life, etc.
I am just really weary of hurting & being emotionally hurt from day to day to day. I’m just really tired!
Hi Elaine, I am glad you found this site where we offer support to each other. I am sorry you are having such a difficult time. Have you talked to your doctor about pain control? What are you currently using to control the Fibro symptoms? I know for me, I try to take a whole body approach and use a variety of things. I take warm / hot baths with Epsom salt which helps soothe the muscles. I do physical therapy exercises which helps overall and I try to take slow walks at least 4 days a week. I do a lot of deep breathing and work on keeping my stress level as low as I can as that also seems to help reduce the symptoms. I also do a lot of visualization which helps with pain and also keeps the fog from getting too bad I think. It is tough when others around us don't understand - I try hard to focus on myself when that happens and let the hurtful things go as holding onto anger just makes my Fibro worse. There was a recent article on here on that explained chronic illness to love ones, I will post it on the front page again for you. It might help your family and friends understand. Anyway, I am glad you are here and I look forward to getting to know you more. Hugs!!!!!!
I am glad that Auburnm is posting "the letter" for you. The letter is very helpful for yourself and others. I hope you have a good rheumatologist. If you don't, find one. Remember that you are in control of your own health care and if you don't like your doctor or things your doctor is doing, you need to speak up or find a new one. I am very sorry that you have so much on your plate. Are you still dealing with the breast cancer, too? Did you get a second opinion on the knee replacement? There are very good medicines for osteoarthritis.
Teenagers are a different breed of people, all together(lol). I have a 17 year old, daughter. Maybe, the two of you can find something that the both of you enjoy. It could be just "your thing". Something only the two of you share. If you explain to her and let her read the letter, I am sure she will be more understanding.
As far as your marriage goes, I got nothing. I have been divorced twice (lol). Good luck in that department.
Everyone on this web site is very understanding, compassionate, helpful, and here for you. I feel very fortunate to have found friends here. I wish you well and send warm hugs your way.
I'm sorry you are tired, weary and hurting Elaine. It sounds like you have a lot going on physically, emotionally and at home with your personal relationships. I had to address a family member of mine the other day that said something hurtful, but didn't even realize they said it. I was talking about how I'm having a difficult time work and concentrating, and the family member replied, "Well, you can't let it affect your work Sara". Um, don't you think if I could help it I would? It really helps to have an honest conversation with family/friends if they say something hurtful to you and to let them know why it was hurtful; alteast from my experience. I have also found that making this more "relatable" or putting experiences into perspective using something that person can relate to is helpful. When I first explained to my husband about CFS, I told him it's like having a cell phone battery, that never fully recharges, or you only send 2 text messages and the phone dies. It takes very little to "use up our battery with what little we have". This really helped him understand the CFS. Is there something your husband or daughter are passionate about or they can relate to that you can use metaphors or symbols to explain how you are feeling to them? When we get weary and worn down, we need to take extra special care of ourselves. I know it can be hard though because when "feeling better" involves mending relationships with other people that have hurt us, it isn't completely in our control. I'm here if you want to chat or need support.
Sara
Hi Elaine, I am sorry to hear the difficult time you having right now. Sometimes it does feel overwhelming. I send you hugs. I think most of us struggled with fibro symptoms long before we got the diagnosis but personally I felt some relief for at least I knew what it was that plagued me. And yes, some people believe that this is a real disease and others don’t, but we can’t control others. Hopefully with some sharing of documents and education family and close friends may become more supportive. At least you will find lots and lots of support here. I am glad that the chronic pain article was reposted. It is very good.
We even have groups that focus on specific topics, such as arthritis and fibro, you will find them under the groups tab above. I too have osteoarthritis, severe in my hands and moderate in my knees and feet. the trick for me is finding the right balance of meds for my arthritis, fibro, and lifestyle practices that allow me to still lead a full and happy life. I hope you find support and understanding here to help you as you deal with your health issues. I am really glad you found us. Hugs!
It sounds overwhelming, and you have gotten some good info already. I just want to talk to you about the whole “what others think” thing. It has to be really hard to not feel supported when you have a chronic illness. We have to find our own strength for times like that, and be our own best advocate. We can do our best to educate our family and friends, but there is a limit: either they care or they don’t, either they’re willing to try or they’re not. It’s really up to them to make that choice, and if they don’t make the right one we have to be strong enough to stand on our own until we meet people who care about us unconditionally. Believe me, early on I felt the same way that you are right now. I wanted people to understand and to be kind, but I kept finding myself disappointed. So I made a rule that I try to educate, but if that didn’t work I had to let it go. I had to stop worrying about what others thought or said about me. I am who I am. Take it or leave it. It was hard to let go of all that worry, but I am so glad I did.
I hope that you start feeling better and that things start to look up for you soon. Until then, we are here for you.