so frustrated and spiraling!

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Q&A | Fibromyalgia Support Groups | so frustrated and spiraling!

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Name: lmb2 Title of Question: so frustrated and spiraling!

Question: I don't have a specific question, just more like needing to vent a little and hope for some miracle advice lol. I was diagnosed with fibro just a few month ago. I was sure that's what it was before i even saw the pain specialist, and i was right. My problem is that I thought things might get better after getting the actual diagnosis and I thought maybe it would be easier to deal with after knowing for sure what was causing all my problems. boy was i way wrong....... I'm not sure what makes it worse, the fact that noone in my life understands or really accepts it (including my husband), or the fact that now AFTER the diagnosis, now I am having a hard time accepting it and dealing with it. I find myself thinking that one day it will just all go away like i never had fibro (not hoping.... like actually thinking maybe it's all a mistake and i'll wake up one day fine). So why was I fine with it before and now I don't know what to do or how to take it?? I feel like I'm also in a downward spiral that I can't get out of. I am 25 and a mother of 2. My husband is military and when we got to our new unit a year ago, we decided I should get a part time job. I took a later shift so the kids didn't have to go to daycare, and I thought that since my insomnia keeps me up past midnight most nights anyway, that it would be fine for me to work until midnight. I was wrong there too.... My fatigue is out of control lately and I sleep in until 11am way too often and I don't like it. but i try to change my sleep schedule so i can get up earlier, but then i work and have no choice but to be up really late, so it messes my whole plan up. Seems like I am having more and more bad days and getting more tired and I don't know what to do, I can't quit my job right now, and I have to do something about the fatigue for my kids' sake.... And I really need to figure out how to accept everything myself whether my husband can or not (he likes to think I use my pain as an excuse for things and that makes me more angry than ANYTHING). I have tried to make him more knowledgable on the subject, but only seems to help temporarily.... but how can i get rid of his doubts if i'm struggling with my own.... even though when i really think about every aspect of it and think about my symptoms, i KNOW that the diagnosis is correct..... any advice?? wow, this ended up really long, thanks for listening to anyone who reads this :) (p.s... if any of you "miracle cure" ppl replies to this by saying that i don't have fibro and i have limes or it is all in my head i will Screeeeeaaaam! ) ?

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Name: marwal | Date: January 14, 2008, 2:17

Answer: I'm so sorry you are going through this without support from your husband. I thought I was a hypochondriac at first because something new was hurting every day, and I would tell my husband about it. I'm sure he must have thought I was overdoing it, the thing is, on a good day, I certainly wouldn't complain. After a long enough time, we both started to see a pattern. And even though I'm diagnosed now, I don't really say much unless I need to take care of myself. Such as I'm not doing anything today sweetheart, I feel like I've been hit by a truck. So he doesn't necessarily take over my duties, he just lets me do what I have to do, if it's sleeping, or whatever. He knows that when I have the energy, I will and have no problem running around town and being supermom. I worried at times that he thought I was being lazy, but we've been married seventeen years, and knows me well, and that I would never fake an illness just to not do dishes or have him take my daughter to soccer in the evenings, because I can't move by that hour. In fact, I have to say that this man has taken over a colleague's night shift, so that he can sleep during the day and be up to cart the kiddie to her sports, which is at least three evenings a week. As far as I"d be concerned is not making extra money right now, but taking care of yourself, and what energy you have left over, for your family. It's time to stand up for you, and seek help if necessary to help yourself adjust to the diagnosis. Fortunately, it's not a death sentencde, but if something is hurting that never lets up, then treat it like any other injury and see a doctor to rule out anything serious. Depending on the age of your children, at some point talking to them in a way they can understand-let them know why their mommy isn't jumping all over the jungle gym, like someone else's mommy. Trust me, they get it, and a very early age. It should reduce some of the expectations and tension that may arise with you and the kids. One more thing I've found, that as you begin to accept your illness, your need to make excuses to others and esp. to yourself. You know there's pain, chronic icky pain, and there's fatigue, a lot of it in some people. You've been given a challenge in life, and ultimately it's up to you, not your husband or pressure from friends or work, to decide how you are going to live with it. Good luck, Just a quick tidbit, taking a mild antidepressant could help in coping with what ever comes your way. Bye. =

Name: marwal | Date: January 14, 2008, 20:32

Answer: sorry, I meant to say that as you begin to really accept your illness, you won't feel the need to have your illness accepted by others. =

Name: chloe3 | Date: March 27, 2008, 1:47

Answer: Imb2: This whole thing is so difficult to deal with any way you look at it. I know how hard it is when your husband is not supportive. Try to remember that even you are having a hard time coming to terms with this and you are the one who is actually suffering. He is unable to physically "feel" your pain and, what's worse, he sees no actual physical signs that make this illness undeniably "real" to him. Unfortunately, so many of us don't believe in anything that we can't actually see, touch or feel. My husband reacted the same way and I finally decided to include him more in my everyday needs by asking him to help me with difficult tasks, etc. He always wanted me to be less "independent" and allow him to take care of me--it actually helped him accept things when I finally swallowed my pride and let him do some things for me. However, when I saw that he was still struggling, I began making my doctor appointments at convenient times when he was available to join me. Actually hearing the doctors talk about the problems associated with fibromyalgia, as well as seeing the test results in black and white, began to wake him up. It also allowed him to take an active role in my treatment plan. He was able to ask the doctors questions and point out things I didn't realize. He has a much better understanding of my health now--ten years later. However, we definitely experienced a long and not always pleasant "learning curve." My best advice is to take it one day at a time. it is very difficult for those who love us to watch as we come down with an illness. They feel frustrated that they can't help us recover--they want to make everything better. When they can't, they sometimes become frustrated and angry. Don't be too hard on yourself. A friend of mine asked me what I would do for someone else that came down with fibromyalgia--then she told me to feel that same compassion for myself and treat myself as good as I would anyone else with the same illness. One last thing...know that you are not alone. =