Hubbys constant comment is that we "can't" plan anything as he never knows what 'person' he will come home to!! But IF he were to tell me ahead of time what he would like to do after work or on the weekend, I am forewarned and prepared to take that shower, apply my makeup and dress in something other than my raggy sweatpants and long big tshirt! I dress for comfort, not the latest fashion statement!!

'Words" are not always spoken, but you can 'feel' what they feel....disappointment, dispare, and frustration. I try to keep up with the housework as best I can, but I feel it is never enough! He is the one that bring home the bacon, but I am too tired to fry it up!!!

JLCarter...I give you ALOT of credit to hold your tounge when your DH comes home and acts like HIS day is the most stressful and trying day a person can have! He'd have a sore face if he were my DH!! Do we have to constantly 'cry' when we are having a really bad day? Tears are effective on males, but come on...it creates more stree for us, unless we have that really good heart renching cry from the bottom of our soul. That can be so healing in itself!

I'm ranting on, so will end this post with the fact of...I just wish they could spend a day in our bodies and get the full effect of Fibro. That would silence alot of the comments us fibbies get on a daily basis! Good night to all....

Anyway after I was a bit better after my flareup and returned to work part time I told him I was doing fairly well.

Then he said " Well that's good to hear- wish more people with fibro were like you ... I just went to a conference and they talked about fibro. They said people with fibro don't just HAVE fibro- they ARE FIBRO!"

Even though I wasn't feeling that bad physically at the time I was so offended. I thought "Just because you see people with conditions that are breaking down the body more like Lupus and RA- we don't FEEL any better than they do- In fact we FEEL just as bad except our bodies aren't breaking down like theirs.

I often say "Ok I know now this isn't KILLING me- so- now I'm left to realize I'm going to have to LIVE LONGER FEELING THIS WAY???? This is suppose to COMFORT ME?????? Needless to say- I never went back to see him.

Then he says if I am in bed when he gets home from school, "I can't believe you are in bed AGAIN! All you ever do is SLEEP or REST!

If you would just get up and and PUSH YOURSELF to do more and you would build yourself up so you could get better."

It breaks my heart, because I know how hard it is for him, and there's not much I can do about it. He doesn't understand a sickness he cannot see, and he thinks that I am deliberately spending all my time in bed because I don't care about him. I guess I can understand why some people might think that "pushing yourself" and "get up and exercise more" would make us feel better, because some illnesses are like that where you gradually build up your strength by increasing activitiy a little at a time until you are healthy again, like when rehabbing an injury or getting over a bad virus. My 10 year old is like most of the normals: they think this is something that will get better and just go away, AND that we could control our symptoms if we really wanted to and worked hard enough at "getting better" and "doing more."

My 12 year old son told me yesterday, " I am ashamed of the way this house looks and I am ashamed of YOU! I can't have any of my friends over because the house looks like crap. You are just lazy!"

No amount of trying to explain would appease him or make him back down. He is ashamed of his mom and thinks I am lazy and just don't care about how the house looks. He doesn't understand that I lack the physical energy to clean it or how tiring cleaning can be and how it can hurt muscles, exhaust me for days afterwards, and trigger a flare if I do more than a tiny bit of housework. Even the basics are an effort. Spring cleaning or deep cleaning? Forget it! I am so depressed and so overwhelmed about my house and how bad I let it get that I don't even know where to begin. Doing " a little bit at a time" doesn't seem to make much of a dent in it, and it exhausts me. I want to hire a little spring cleaning done, but I have to get the house "clean enough" to be cleaned, if you know what I mean...totally decluttered and no stuff sitting around everywhere.

Of all of the insensitive or clueless comments from normals, hearing them from my boys -- I'm a single mom who's sacrificed her life for them so far basically -- makes me want to cry. But if I started crying, I am afraid I'd never stop, and I have to hold it together or I won't have any strength left to fight this condition and keep on going.

I think "why don't you PUSH YOURSELF?" is the cruelest thing I hear, knowing that pushing myself when I'm in a flare will land me in bed for days. no matter how many times I explain that, my kids just don't or won't get it. The only place I receive any words of support and encouragement are on this forum, because I certainly don't ever hear them from my family. I feel so guilty and inadequate that I've let them all down, but at the same time ANGRY that they judge me so harshly and they will never understand the small daily triumph it is when I get through a long, painful day, nor appreciate that I rarely complain about it in front of them. I wish they could learn to accept me as I am and learn to help out more instead of complaining and putting me down. So far it's a losing battle and I lack the strength and energy to MAKE them do more chores -- and they KNOW it! Sorry to ramble on but it was a really bad weekend and I am very depressed and sad.

Post edited by: hipmama42, at: 04/14/2008 01:12

Post edited by: hipmama42, at: 04/14/2008 01:16

My mom is good to me. She ic coming down to help me today. She has been spring cleaning my house. It is really dirty. I used to be an expert cleaner. I used to help her. I feel so useless.

My husband is calling the congressman's office about the SSD denial today. The person that has been handling our case was off last week. I hope he can co something. I cannot believe that I have 2 degress and that I spent all that time in college away from my kids and now I have no income. I am povery stricken. If my husband were to leave me I would have no income and no where to go. For the first time since I was 19 I have no money and no way to make any. I e-mailed an application for food stamps and help with utility bills on Friday. I think we will qualify. I am going anywhere for help.

THe stress is killing me. It is time for people to wake up about fibro. One person has caused all of this anguish. The JUDGE--BECAUSE HE DIDN'T LIKE HE. He had an attitude during the whole hearing and had me so scared I forgot what I did know. With his screaming and ranting about stuff that happened 2 years ago instead of stuff that was important. Fibro is progressive--he should have been concerned with last month. I had lots of new information for him, Medically all my bases we covered, becaused people were helping me. When I show people like the lady at he social security office my paperwork from my hearing --SHE CAN NOT BELIEVE IT. SHE SAID SHE HAS HEVE SEEN STUFF LIKE THE STUFF IN MINE---I hope that means the Congressman can help me.

Please know you are STILL worth something. If you have defined yourself a lot around your job it is hard to feel useful otherwise. It might take some time but you WILL find a way to see that in yourself. I'm still struggling.

You've helped me. Your posts are very informative. You are helping others too!

Your transmitions out in your car, get a job.

Your refrigerator is broke, get a job.

Go back to work you'll feel better.

You had lung surgery 1 year ago your well, go back to work.HAHAHA.

Then he offered me his change jar. I reminded him that one time when I came there he told me of this lady he treated that was really bad off and there was nothing he could do for her so her offered her his change jar. I said to him, "Gee, thanks. Do I really look that bad that you are offering my your change jar. What an insult. He didn't know what to say.

My dad is 69 years old and he has had the hardest time adjusting to me being sick. He is always used to me working and being busy and it is so hard on him to watch me have troble walking up the stairs or get out of the car. Sometimes I have even seen him cry. My mother is the opposite. She is looking for the fix it all. She thinks everytime I try something new I will be fixed. She helps me with everything. Go easy on your parents. It is hard when one of your kids is in pain. Especially when you can't do anything to help them. Maybe they think if they can get you up doing things, you won't really be sick. I have six kids and I know it would break my heart if I had to watch one of them suffer with fibro. Sometimes parents just need some time to catch up. I hope I helped a little