I feel the same way. I’m 29, and I feel like I’m already an old woman because I’m very limited on energy and being social. It is a very isolating feeling. What I’ve figured out through my twenties is that I’m much better off to just keep in touch with a few close supportive friends and not worry about anyone else. If my friends are really my friends they will at least try to understand and they won’t judge me for being boring. It’s taken a while but I’ve found some friends like that. Also, the article someone put up on here a month or two ago about the spoon analogy is really helpful for explaining your situation to friends who don’t know what it’s like to have fibro or CFS
What Petunia girl says '' It seems that fibro really does interfere with our ability to work. I am going to suggest something to you: I think you should contact a good SSDI lawyer now and talk about your situation. I think you are going to need to apply for it in the not-too-distant future" I had to go for it eventually and i won my ssdi in late 2003. Then you can work on yourself and not be stressed that your not performing well as an employee...Expect to be turned down but a good attorney will win,he only gets paid if he wins..God bless wayne
Very good point, Wayne, the attorney usually wins the case by the 3rd attempt (80 percent of the time with the lawfirm I used, Allsup.) I'm sure there is a TON of pressure put on them to make sure to get things right so your case will be approved.
And Wayne is also right that once you get the disability, you can work on yourself without the stress of performing well at work. By the time I was approved, I was past the point of being able to work. I couldn't concentrate on the road anymore (was a Meals on Wheels driver), which became scary. My son came to visit for the summer a month later, and helped me do my route. HE did most of it (I gave him all of the money) while I drove. He told me what streets to turn down, although I had known the route well prior to getting so much worse. He delivered the lunches. I just put them together. And by the end of that point, he was aghast that I couldn't concentrate on the road anymore from the fatigue, nor could I do the deliveries. Yet I'd started out being able to do all of it and really enjoyed the walking during the good weather. But just the fear of doing my job was terrible, until I finally was approved for disability. It really does make a difference.
Ahava31, I really understand everything you said, because I have the same life. But maybe there is hope that you can find a job more suitable for you. I know how important it is to work. I was working six days a week for many years, then my fibro took me and I’m not working. I miss it. But through the entire time I worked that much, I have had no time to have a life either. I’m 46, been married at 17, divorced at 27, by then my fibro seemed to have diminished enough that I thought it was not there at all. I found another partner and that lasted for 13 years, now I am free and have no life. It is very hard to enjoy in those places others can play, it is a shame for us to see life in the way we do. We work much harder than others do just because the pain is overwhelming. I just finally talked to my X husband and told him my diseases, what can he say? He really doesn’t, what can he say, he can’t do anything for me about it. But I lost two relationships and fibro was there and present both times. Either I’m to tired or I’m out of cash. No gas to drive my little out dated second hand car. So I use the internet and still don’t go anywhere. I have guys that would probably fly across the country to see me and for what, me to say I’m tired lets go to the movies? LOL, I’m trying to be funny. But it is the truth. But I am upfront with most people I just meet. Not everyone understands why we have our limits. And I can’t keep up with those who don’t want to wait up. So I snub a lot of guys, I can tell who will be patient and who wont. But even the patient men are still to hard to keep up with. And I can’t do all the activities they do. For get skiing, or rock climbing, or long hiking trips.
Keep your head up and look for the things that will free you up a little more.
I’m so glad I found this web site, I want to cry for you and me. I never knew there was some one else out there suffering as I have. I still feel like something is wrong with me. Everyday. And everyday I know why now. Before I was in mental darkness and now I’m in a brighter light.
I like that idea of having pj parties online. That would be cool, and I've heard many times before that you should not drink alone, so maybe we shoud say that we should not be bored alone. Since we can't get to a meeting place, we bring the meeting place to our computers. Wonderful. I can work skype and i'm in the skype community. It is free to those who belong.
Wow. First off let me just say that ALL OF YOU are SO amazing and inspiring! I thought I was the only one who was suffering this much, maybe that there was something specifically wrong with me and I just had to tough it out. All of your stories touch my heart and my deepest prayers go out to you all. I pray that we will all receive a complete healing one day very soon, but in the mean time it is a comfort to know that we all have each other, and there is always someone who totally understands the pain, fatigue, etc to turn to. I appreciate all of the amazing advice as well, and Petunia Girl, unfortunately I do think that I may have to file for disability soon. That thought is always on the back burner in my brain, and I have been fighting it for years, but the reality is that the quality of life for anyone who suffers from fibro or any other horrible disease is just so limited. Even more so when you work a million hours a week and friends and family start to disown or dislike you because they don't understand what it's like to feel like your whole body is filled with cement and all you want to do is crawl into your bed and sleep for a year.
I really like the idea that several of you were throwing around as well about somehow connecting on here and having our mini get togethers/parties. Everyone can be in the comfort of their own homes, on their computers and even in their pajamas if they so desire (which is pretty much my go to outfit when I am not working). I am not sure how to make something like that happen, but I am definitely in favor of the idea.
I am SO grateful for you all, for your kind words and hearts and I feel like there is always a listening, non-judgmental ear on here that I can ramble to when I need it most. You all have no idea how much I value and love this group of incredibly strong fighters. I apologize I can't get on more often, but I am trying to change that so that I can hopefully hear more of you and God willing offer you all some wonderful advice in return for the amazing ones you have blessed me with. A very rare but lovely update is starting today, I have three whole days off in a row! I am praying this will be enough to recharge my batteries, even if only for a little while. I am constantly running on empty.
Love, blessings and prayers to you all! <3
Hi there all I am amazed at the reply's to this . I am tucked up in bed after a dayat my not so local hospital. I was in so much pain a different type of pain yesterday that I called 111. The paramedics to me into hospital and I was there for many hours after which I was given oral morphine and sent home. This mid morning finds me propped up in bed with my lap top. I have seen how just writing about our life's on this page is a general lift. Some of the replies are heartfelt uplifting honest and something we all can relate to as we travel this journey of Chronic Pain .. Chronic fatigue .feeling boring helpless and dysfunctional many thanks you all
I'm sorry to hear about your pain and troubles, Madmaria!
I hope you are feeling better today. I know it is so hard to live with this chronic pain and fatigue all the time, but it definitely helps to be able to come on here, vent and swap advice with others who truly understand.
blessings and prayers