I discovered the following reply from Angelwings under a different post. At the risk of it getting buried I thought I would create a new post. I think this is is very important. Is this something a Mother would share w/ her children? I have not made an issue of suggesting that they read up on what my life is like on a daily basics. They see me smile, laugh, flirt, play with the grand-children, dance, but they don't see any thing else. Three out of 4 of my kid's said they cut their phone calls short because they don't want to lesson to my answer when they ask me "How are You"...If that question was sincerer then why cut me off before I can finish answering their question. Is it fear or guilt, or maybe my answer is too long? A second reply from nyladyinga:
Tb, I think Angel's response about informing the "kids" is good too.
One of my kids thinks I am a total cripple, because whenever I suggest going/doing something with her she always says, Oh, you can't do that, it involves a lot of walking, or it will be a long day, yada yada yada, etc.
The other thinks I don't do enough. Can't understand why I don't exercise and get out and do more, yada, yada, yada, etc. He thinks all I do is sit around all day and watch tv and play on the computer.
Must be that maid that comes in and cleans and cooks and does the laundry and the shopping for me, and now goes to work for me at my job.
We can't win for losing here. Damned if you do and damned if you don't.
Are we all dammed??? Lets share some thoughts on this. Have you "fully disclosed" to your family and friends? Would we better off disclosing? This can be a deep thinker my fellow Fibromites..
Okay. I believe that anyone that asks me how I am either cares or doesn't. I can tell by their demeanor. Even those who want to know, prefer a one sentence answer. If someone cuts short my call, it means I have gone on too long. And you know we all have a tendency to ramble. So my usual answers range from "not bad" to "I've seen better" to "just peachy"--the last one is irony. When I am having a good day I say that I am good. My followup response is "o my muscles are tight" or "I'm a little tired" or "I can't move well today"--that means so don't ask me to do anything for you. People, even our children, are going to believe what they want to believe. I can't change it, I don't bother. In fact, it really isn't my business what other people think of me. I do demand to be treated with respect but that is all. I am reponsible for myself--no one else. I got that from the inspiration tb posted the other day. So, I am not a full disclosure person, I will tell you I have fibro if you ask. I am also not a "don't ask, don't tell" person. I am a "need to know basis" person. And my need is the only one that counts! :o) I have to go now and do some pre-emptive resting. Sparkles.
I was diagnosed many years ago with Fibro. My children were much younger and my husband was very involved and interested in my condition. With that being said..I think they have all gotten tired of the same old "stuff". From my viewpoint it borders on boredom. Intellectually I know they "get it". In my heart? I'm just not sure. As I have already mentioned my husband is of great help. However I got some underlying anger about having to work, grocery shop and do the laundry. I think the laundry was the final straw which he has just started doing in the last few months. Realize my problems aren't all Fibro but a bad back. So too make this long story even longer I tried to do the laundry. The contents were overflowing onto the bathroom floor and husband mentioned he had no more underwear. Well what the heck why didn't he do the laundry. He would be the last to complain and maybe I'm reading more into this. I took it as gee honey do you think you can get up and do a little something sometimes? The guilt I feel about my inadequate capabilities can become really overwhelming sometimes. Have I gotten off point? lol..Boy when I ramble I can really do the job right~
Here's the way I look at this. And this has just been my only observation in my life. I think no matter what I say that my family/friends can't really relate to what I'm going through. I'm beginning to think that in the same way I can't relate to a person who is blind? Deaf? I haven't "walked in their shoes"~
Ok kathy you beat me to it! lol. We must have been typing away at the same time and we already know your fingers fly over the keyboard while my kind of stumble over the keys~
I had thought about making a reply after what nyladyinga replied but thought better of it. This is where it belongs. I have one friend who gets it. She was diagnosed with Fibro before the final diagnosis of MS. Another friend who seems to accept it, but is always asking if I am doing too much or if I am hurting. Not sure he really understands.
I have told my son but am not sure he understands either. If he has noticed how I have had to slow down he has not said anything about it. Just this week I tried to explain to my sister. I know she does not get it. I asked her to watch the program we have been talking about so she can get some idea.
I have no family that sees me regularly,only my pets. I don't think they care as long as they are fed and loved. LOL
So as usual (most of my life)I have had to deal with the hard things in life on my own. I am not alone though, My Lord is always with me. I try to keep a positive attitude, but sometimes it just gets to me.
Full disclosure - well some may just not want to know for what ever reason. I could go on but I think this is enough.
Glad you asked. I only recently started telling people about my fibro. I get blank looks, no questions, rolled eyes. My family sees me once a year when we go north. I will take every drug I can & struggle to keep up so they don't see the symptoms or hear me complain. I danced at the recent wedding up there. How can there be anything wrong with me, if I can dance? Everywhere we went I was on the second floor, even though they know I have a partially ruptured achilles tendon & fibro. But I can walk so I walked. I am paying for it now & only my husband sees it. He knows, he understands as best as he can. He helps me with all I need help with. But there are times I know he doesn't want to "hear it" either. When he asks me how I am, I tell him but to tell the truth, I am sick of my own voice! I want to stop complaining. Seems that is all he hears from me. How long will he be able to take that? Then again, if he wants something (ie: sex) I do what I can, even if it hurts. I no longer volunteer though. I talked with Nana today on the phone & my husband was home & I think he must have thought "Here we go again, yada, yada, yada." But we had a nice talk and next time I call her, we can move on to other topics. Sometimes I don't like myself---want to shut-up, but just cannot. Thanks to you all---you save my sanity & my dignity.
To add to my previous reply, I don't tell people about my fibro. As someone said, it is on a need to know basis and most people don't need to know. If I am not moving as fast as some, I simply say my back hurts (which it does).
I don't complain to my kids when I talk to them. If they ask, I tell them I am getting by and just a little tired.
My son did tell me last night when he called that he was proud of me for getting and sticking with this job and he knows that I will do more when I can. That was a good thing to hear from him.
Since I live alone, I have to do everything myself. If I don't it piles up and then it is a worse job. I just do a little at a time and rest in between. And hey, it will still be here tomorrow, so if I don't get to it, so be it.
My friends are good about my fibro, since they all have their own aches and pains and health problems. So they understand good and bad days.
Disclosure is overrated and not needed by all. Pick and choose who you disclose too.
I did not say it before, but only a few people have I told I have Fibro. The few I told you about and 4 of my nearest neighbors. As someone one already said " on a need to know basis". By nature I am a quiet person and keep things to myself. EXCEPT With my friends here. LOL I get pretty talkative. I have Told you more about me than any one other person knows. Why --- because you understand.
Well, I now have something different to tell people. Instead of this aches, that hurt etc. I say I have cmps and fms. Amazingly almost every one knows what it is (sort of) or knows someone with it. They don't quite get "IT" but they appear to be trying. as for my kids. My daughter knew very little but some and asked questions. Still is. My son, i think, is relived, as I am, that he can tell people what is wrong with me. A name, two names for what is wrong. I think it makes sense to him now. Knowing him he looked info up and reassured himself I would be ok. Able to take care of my self I mean. He called me while on his way home from a job (about 90 minutes away) and said he was in a used book store and found a book on fibro etc. did i want it? he will do that, often now, that he knows what to say to people and look for. He has always asked questions. He has always accepted that I didn't feel well, when I would say something, it was hard because I didn't look sick, might have acted it but I looked ok. He could tell something was wrong but what?
And anyone else that asks will get all the info they want and then some. If they don't want to hear don't ask. I'll be kind to them and see the mood. I've had more people ask questions than not. I am not surprised anymore when someone says they have it or know about it. that's a good thing .
I have 2 friends who haven't seen me, one in 5 yrs and the other hasn't seen me in 6 or 7 months, since I got really sick and got better, lost weight. My other friend doesn't get it I don't think. I have seen her a lot so she has had to listen to my whining. I have given her some info and will lend her a book.
I've always passed along info and such to people. If I know it, I'll share it. If I don't know it, I'll go find out.
I'm a "need to know" person. People I associate with regularly have been told once that I have Fibro. I explained that at times I was very tired and at other times very forgetful. I just say that my doctor is helping me find a combination of medications that will help me feel better and that I'm not terminal! I don't discuss it with people I seldomly see. Early on I tried explaining how I was feeling when asked but found it too exhausting to listen to other people's input about all the things they thought I should do about it. If they don't have it, they don't get it. Just that simple. I recently had a friend we were vacationing with say that if I didn't take naps I would sleep better at night. I just said, "Of course you would think that" and just let it drop.
