Everyone is affected differently, right??

I went to see my mom today. And I was talking about getting on SSI, which, in the past, she has supported. But, today, she told me that I didn't want to spend the rest of my life on disability, and that she knew a lot of people with Fibro who work and do just fine. I felt a little angry. I mean, other people who can deal with this illness and work is great, but even the tiniest bit of housework puts me out. I feel like even though she is learning about the illness that she is expecting me to be like the other people she knows with Fibro. I feel like she thinks that I am using my illness as an excuse to be lazy. I wish I could work. I would love to work. But I can't. And any time I mention the possibility of me getting some kind of job to my husband, he tells me that he won't let me because he knows that when I would get home from work, I would collapse. When I had my last job, that is exactly what I did. I would get home from work, and usually, my husband would have to go and pick up our son from the babysitter because I would walk to the couch and collapse. Literally. I would crash out on the couch because I was so exhausted and in so much pain. I only worked 4 hours a day at max because it was a part-time job. That little bit of work made it so I couldn't help out much at home afterwards. Plus, I would have to rest BEFORE I went in to work so that I could actually do my job. But, then, I ended up calling in more and more because I just was so miserable that I couldn't funtion well enough to do my job.
Everyone is affected differently, aren't they? I mean, not everyone can cope well enough to be able to work. And those of us that do work usually have the same problems that I did when I had a job, don't they? Why doesn't some of my family understand this? My mom knows that I am in pain, but I feel like she thinks that I use it as an excuse to be lazy, and I don't. This just really upsets me. I need to know if there are others out there who deal with the same kind of thing that I do. I need to know that I am not alone. I need to know that everyone is affected by this illness differently.

I'm sorry you're getting this flack from your Mom. It's good that your husband sees what working outside the home does to you and supports your staying home. I worked just 4 hours a day, 4 days a week and pretty much collapsed on the couch when I got home, like you. I often went to bed at 7:00 in the evening and slept 12 hours, and it still wasn't enough to get me through my 4-hour work day. I left my job in November. My husband agreed to that, but only for 6 months. He believes after a 6 month rest I should be able to go back to work again. Well my 6 months is about up and I just can't see it happening.

I was thinking about going to a temp agency. Maybe I can do short-term temp work, and I can work when I feel up to it and decline when I don't. I don't know. I would like to be a productive member of society, and I would also like to contribute some cash to the household. I don't know if I'm ready for disability.

And yes, I am sure it is different for everyone. And I think it is different for each of us over time. I worked with fibro for 20+ years. Full-time at first, then part-time for about 15 years. But now, it's different. Now, I don't feel that I am up to it.

My Mom worked in a dress factory with the horrendous pain of RA for many years. She was too proud to "take a handout from the governement" and couldn't afford to not bring in anything, so she worked. She forced herself and she was miserable. She pushed her body to its limits and she suffered terribly for it. We shouldn't have to do that to ourselves.

Anyway, I don't know if any of this helps you, but I do understand that the decision is a difficult one, and each person must decide for his/herself when the time is right.

hugs,
Donna

Hi Sassy! Yes, like the posts above, everyone is affected differently. I've been on SSI for a long time now. I still hate not being able to teach, but my fibro just wipes me out. I'm raising a grandchild, and that is getting more and more difficult -- but she's old enough now that she understands most of my problems. Bottom line: I echo the above posts -- you are the only one who knows how severe your symptoms are. Be honest with yourself -- take on only what you know you can, and try not to take on any guilt for what you can't do. It's not easy, but it can be done. In the meantime you can always come here to vent or share or whatever you need. We are here for you and we care.......
Luv ya
Shash

I really appreciate all the replies and support. I am going through a ver difficult time right now. I found out today that my entire family may be dismissed from the doctor's office we have been going to for almost two years now because of something that happened with my husband that I don't really understand. I don't know what is going to happen. I am really worried. I have a doctor that I really like. He is understanding and really seems to understand and care about what I am going through. I don't know what will happen if I am moved to another office. Will I still be able to get the meds I need, especially my pain meds? I don't know what will happen. If I can't get the meds that I need, I know that I will end up in the hospital. I am so stressed right now, and so scared. I don't know what is going to happen. I keep crying because I don't know what is going on. I just want to stay at this office, with this doctor. He understands me, and he knows that I need all my meds in order to cope. He believes in my condition and cares. It is hard to find doctors like that, especially on medicaid. I don't know what is going to happen, but I could really use prayers here.

My husband contacted medicaid directly and asked them if an entire family could be dismissed just because of one person, and they told him that no, and entire family could not be dismissed. If my son and I are dismissed along with my husband, then we have a potential lawsuit on our hands. So, I should be able to see my doc for my next appointment, and if they tell me that I can't, then we are to call a certain number that the person gave us and file a complaint.

That's some good news for ya!!! I am hoping that this is taking some stress off your mind. I don't think you need to worry about anything more. You have enough stress from the sounds of your posts so this should ease your mind at least a little...((((hugs)))))

Heather

Yes, I think everyone is affected differently with fibro. My son has a woman on his fire department that has fibro and was an active firewoman til a year ago and now works in the office. If he and my DIL compare me to her than they don't get how I feel cause there is no way I could carry the gear around they have to wear that alone fight fires or work in the office as far as that goes. Fatigue has always been my biggest issue and even though the pain is getting worse all the time it is still the biggest issue most of the time. I know for some the pain is the biggest issue. It's hard enough trying to get people to understand fibro in general so trying to get them to understand the different degrees and problems with it is next to impossible. But you know what you can and can't do and it sounds like your DH knows too so don't worry about what others think, do what you can do. You know I do all I can do most days, I do give myself a free day sometimes everyone needs one, and that is all that matters to me. As long as I'm moving forward and feeling good about what I accomplish that is all that matters. My DH doesn't even have to ask how I feel cause it is like writing on a chalkboard everyday around here, if I'm up doing things he knows I'm having a good day and if I'm on the couch with heat he knows I'm having a bad day.

 

luv and hugs

Marlee