I agree. For the most part I have quit trying to help anyone beyond my immediate family understand it. They just don't get it. Most have not heard of it, don't understand it, think...well, she looks ok...just acts sick all the time, hmmmm. The only one who I think truly gets it, thank goodness, is my husband. He sees what I go through and is very empathetic and supportive. However, in the beginning, he was trying to be supportive, but didn't truly understand it. I had him start going with me to my doctor appointments where he learned directly from the doctor. And, that brought about a wonderful change and support beyond belief from him....he now gets it FULLY. Now, that he handles dealing with his family about it for me. My sister also has FM so my side of family at least better understands it. But, it has been a problem with his parents. They had never heard of it, don't understand it, were so used to me being so active and capable for so many years when I was still able to work and had life functioning strength/ability. His parents are planners/timers...if they plan a family event and I get sick and can't make it they unravel. Of course I lived in fear of that and stress and a billion other things can trigger difficult flare periods which always seem to happen when his family decide to plan an event. With my husband's support we now just make it clear when originally invited that we hope to be able to attend, but please remember that we frequently never know until that day how I am going to be able to function. Small things such as how much sleep I got the night before can determine whether I can even get out of bed and shower on some days. So, we tell them if that might be a problem then perhaps we should decline the invitation now as a courtesy to them. That process has seemed to work out better for us. I am sure they are still unhappy if I am unable to make it, but at least we know they were told and given the option at the time of the invitation, so I no longer torture myself with as much guilt over having to bail out if I am just not well enough to make it..............but, it is still a problem....just less of one.
I am thinking that surely this must be an issue for many of us, and I am curious how others cope with things like this??
I understand how you feel, i actually took my husband to the neuro apt so that he could ask some questions and understand how I was feeling, Unfourtunatly I had never seen this nuero before and he specifically told my husband that "fibromayagia is just a name doctors give their patients so they will feel better but isnt really anything more" so now I am going to take my husband with me to see my PCP because she is the one who has been very adimate and straight forward about the disease, and maybe he will believe it once he talks to her, unfourtunatly I cant take everyone to my doctor apt, so I guess you just have to say I am not feeling up to it today and dont give them any explanation. You just have to be ok with yourself and not care what they think. I think that is the only way.
Hi World, ya know I have read a few posts here and elsewhere on Neuros being hit/miss.......for that matter same is true about some Rheumys......such a struggle to find a specialist who is knowledgeable and accepting....keep trying!!!
I really worried that might happen the first time I took hubby with me to my PC doc---that my doc would say something dismissive about FM not being real, but in my head kindathing. It was a gamble, but one I had no choice in at that time because I was in such a horrid flare period I could not drive myself....could not articulate myself....and, I was more afraid that I would discredit myself if I went alone, because at that time this was a new PC doc for me. So, in that situation I thought if my hubby was there that the new PC doc would take it/me more seriously. Fortunately for me it worked out...my PC knew enough about FM to understand it, explain it, and the debilitating hardships---- but he is challenged with being advanced enough to treat stubborn cases that don't respond to general FM treatment options. So, he is now referring me out for consultation with 2 specialists (UCSF & Standford). Now, I have the same worry again ----*what* might these high level specialist guys with hubby there. I am hoping that hubby has heard enough and read enough to stay balanced, but I still worry because his support is so critical since he has to do everything. Sooooo, I can somewhat relate to your situation.
One thing you might consider doing if you haven't yet....is printing out credible easy to read information for hubby from online information sources....the Mayo Clinic, John Hopkins Hospital, the Cleveland Clinic....all are among the top 10 if not top 5 medical institutions in the country, and all have short FM overviews. For me, I had hubby read those and things I printed out through various online FM support sites.
Dr. Devin J. Startlanyl's: A Guide for Relatives & Companions A 2 page easy to read excerpt online from her book Fibromyalgia & Chronic Myofascial Pain Synrome.
Hello all - I am new to this board, but this thread of conversation is very interesting to me. I was diagnosed with fibromyalgia after a very thorough medical workup seven years ago. At that time, I was off work for 3-1/2 weeks. I have been able to work full-time since then, although I take an average of 1-2 days off work during a good month, and have a variety of techniques for handling the bad months. Recently I was off work for 4 weeks, and during that time I decided to retire (at age 53) and collect my monthly pension, and supplement it by part-time contract work. I have marketable skills that will enable me to do this - I could have done it earlier, but I never stopped to think through my options until I got a really bad flare. I know in the full range of fibromyalgia cases, I am very fortunate.
My current boss doesn't get it, and I came to the conclusion some time ago that she never will. She is a hard-charging gung-ho type of person, who prides herself on working on a project until 4:00 a.m. When I need time off I just present the doctor's note with no explanation, or I tell her I'm not feeling well today. That's it, end of story. I actually think I will be feeling much better when I have less contact with her. HR at my workplace is very punitive - good riddance.
My closest family and friends understand, but they sometimes forget. I have to keep my guard up, to make sure that I get enough sleep, eat right, don't over-exert. Over 4th of July, I found myself in a situation where I was driving over 300 miles in 36 hours, sitting in the sun for 3 hours, walking several miles, surrounded by crowds and noise, not eating anything but what I could grab quickly. Any guesses re/ how I felt at the end of the day?
For some reason, I find myself surrounded by people in my family, social circles and work circles who are very high achievers and push themselves beyond reasonable limits. Ha! I suspect that I was the same way before I was diagnosed, so fibro has been a blessing. It has forced me to prioritize and pace myself. I have not been married since my fibro was diagnosed, and I don't know how it could work if your spouse is not understanding and supportive.
I look forward to reading and sharing more on this message board in the future. We need all the mutual support we can get!
For me, the hardest thing was explaining to my daughter why I can't run around and play with her like I used to, why our walks are shorter and slower and why some days I can barely get out of bed. She had just turned 7 when I received my dx but I had been battling with it for years, according to my rheumy.
I was chatting on another message board one day and asking for advice on how to explain fibro to a kid. Another member posted a story they found somewhere about "The Spoon Theory". I don't remember all of the story now but I used the story to explain to my daughter.
Basically, take a huge handful of spoons and give them to whoever you are trying to educate. Explain that the spoons represent your energy and ability to do certain things. Then ask them to tell you about what they normally do in a day and you take away spoons to represent the effort it would take you to do the same thing. Like with my daughter, she mentioned washing her hair. At that time my hair was very long and it took longer to wash my hair than all of the rest of me. So I took several spoons for that activity. Before she got down to what she did after school, she was almost out of spoons. And then I told her that she has to keep some for backup, in case of emergency. And then I explained that you don't start with the same spoons every day, and that when you are haivng a bad day, you have less spoons. It was a real eye-opener for her, although I am surprised she understood as well as she did. It gets funny sometimes because she will ask me things like "If we walk to the park, will you have spoons left to walk home?"
Also after she started to understand, she began to do little things to help me. Like when I am exhausted, she will fix me a cold drink and bring it to me, or she might make PB sandwiches for a snack and bring me some, or even help clean up the house without asking her to help. She figured out on her own that if I don't have to use "spoons" to clean, then I have more "spoons" for playing with her. And she understands that some days are just for reading and relaxing together, especially when it is wintertime.
I think if people can't see your disability that they just don't get it. Almost my entire body hurts with post op back fusion and extreme sleepiness from Narcolepsy. No one gets it. They say I look good and can't believe I'm in so much pain. When I was using a cane after the fusion surgery people bent over backwards with understanding. They assumed I was in horrible pain because I used the cane.
For years I tried to hide my pain from the world, I didn't want the people who depended on me to know how hard it was for me to do things sometimes. After my mom passed away in 2002, I had a long talk with my dad. He had surgery on both arms and I had to take care of him. He felt guilty about not being able to do things for himself, like get dressed and he had trouble feeding himself. Under both arms was swollen really bad (Cushing's Syndrome) and the dr cut out huge fat pockets and then had to leave them open some to drain, which I took care of that as well. My dad broke down crying one night because he felt so helpless, and not just physically. We talked for a while about missing my mom because she had only been gone a couple months. And my dad told me about things he never expected to have to do, like manage his money and schedule dr appts, because my mom always did that for them.
Before I went back to bed that night, my dad told me I didn't have to hide my pain from everyone. He told me that my family could learn to adjust and we needed to make changes before it was too late to learn how to change. I couldn't sleep that night, thinking about what my dad said. And from then on, when I was in pain and unable to help do something, I told my family. I thought everyone would treat me different, like I was weak but after we all saw what our mom went through, it changed the way my family sees people. They don't see me as weak and they help me when I need it. When my nephews were babies, I could only hold them a few minutes unless sitting down so someone was always around to take them when I got tired. And my nieces and nephews are learning that although I can't do physical activities with them, I'm great for storytelling and similar things.
So now, when I am out and the pain starts, I don't hide it from the public anymore. When my knee wants to give way, I walk slower and I am more careful to watch where I am going. I let my body tell me what it is capable of and I don't push it for more because I know what happens then, I pay for it the next few days.
Hey my fellow fibros, interesting thread, yep had the same problem with the planning of outings and invites from family and friends. Family not too bad as I've explained, my mum very supportative and understanding, we speak every day, she has o/a and sooo relates to the limitations the pain produces, my sis has severe r/a but is still trying to come to terms with that, but recently spoke to a fellow fibro at the benefit office and has read info on my condition so is getting there rapidly. Close Friends took the thime to read up too, others, I just say I'll try to be there, but can't promise, I'm learning to say NO it isn't easy, but its worth it for your own sake, people that truely care about you, get it in the end if they take the trouble, sorry if I sound harsh, but I've had this problem just tonight and really just getting it off my chest, been a long day. Thank you for listening, I've also picked up a few tips from your good selves take care keep well SnoozyowlPs Tweiler you are a strong and caring lady keep posting hugs Snooze