How many of us work either full or part time and work in pain all day?
This question popped in my mind while sitting here at work...in pain and pushing through the day. Saying to myself, SELF...you have got to be the craziest person in life. If other people had the pain you had all day everyday, they'd be in the bed, crying and moaning. Or so doped up on pain pills, it wouldn't matter!!!
WHY DO WE DO IT??????
I do it to pay bills!!!! I feel God has blessed me to keep my job and I work real hard at it...why quit. It gives me a sense of being normal even though my joints and body say SIT YOUR BUTT DOWN!!!
I do it because I have a son with a chronic illness and I want him to know you can do it, even if you have to take frequent breaks...WHICH I DON'T always do...SHHHHH, don't tell!!!LOL
Is it knowing we have to work to make ends meet or is it to keep some sense of normalcy in our lives?
Is it to prove to ourselves we maybe gumps, but we can still do the darn thing?
Or is it an ego trip to work through the pain, because we don't want this disease to take another thing from us?
Why do you work even when you are in pain?
I'll join the CRAZY list! I'm 38 years old and have worked since I was 11. Most of the time, working 2-3 jobs. My RA has taken its toll and now I am only able to work 3 days a week...still missing days here and there. I too have went to work and struggled through the day when I probably shouldn't of gone at all but the bills keep coming. I've gone from owning my own home and making good money to living in a small apartment in the back of someone's house barely getting by. Personally, I want to work...it gives me something to do. However, it would be nice not to have to drag myself in when I'm in pain but what can ya do? I guess that's the main reason I've decided to reapply for disability. It's more for peace of mind knowing that if that check is coming in and I'm in pain...I have the option of staying home and know that I won't be eating ramen noodles for a week beause I missed 1,2 or 3 days. I think we are all guilty of being a little hard headed as well...not wanting this disease take any more from us than it already has. I've always taken care of myself and done things on my own. It's hard to accept that you can no longer do everything on your own and that sometimes you do have to ask for help. I am my own worst enemy with this disease and although I try to stay positive and I try to educate myself on it as much as possible....It's one WILD disease and sometimes it really makes me feel like a failure.
Peace & Love....Neasy
Neasy , I hear on all of what you have said. It is more then a notion that this thing we have can get us down. I have been in a flare for over 4 months...now new symptoms have come...but work must go on.
I haven't applied for disabilty only because, I feel like I can still do my job okay...and two, I feel there are SOOOOOO many people out there who really need the help and deserve it...I won't take that from them. If and when my body says, that is it...then I will. Until then, I try to pace myself and push on till then.
Like everyone else that works when they don't really feel up to it....I have to have the salary.
Not everyday is bad; but there are plenty of days were I just make it thorugh because i really don't have much other choice.
I also think it's good for me and anyone else to work that can. Of course there are many who can't work and plenty who don't have to work. I just think there are many days that if it was left totally up to me as to what I WANTED to do.....I would just stay in bed or in the lounge chair all day and that's not always the best thing for folks with RA. The less active you are the worse off you'll be. Obviously not everyone can stay active; but I'm a firm believer that I'm going to keep doing as much as I can for as long as possible.
There may one day come a day when I can't leave the chair. I need to do what I can while I can. One day I may wish that I could get out and work verses wishing I could stay home and rest.
Ask anyone that's confined to a house all day and I'd bet almost anything they'd agree with that.
Willwin, I'm not crying and moaning, nor am I doped up on pills and staying in bed all day. I think you've written a distorted view of the individuals who have had to make a career choice that is different from yours. I retired because I became housebound due to a severe flare. If you've ever had a severe flare then you know what I'm talking about. A severe flare cripples you to the point that you're homebound because of the pain, inflammation and swelling. Ask Liz about a severe flare. She understands what I'm trying to say.
I remained at work until retirement was my only recourse. I did it because I had 3,000 people dependent on me being in my office and available to them each and every day. I was an advocate for the senior citizens in the county where I lived.
I sincerely hope the day doesn't come when you're forced to leave your profession or retire early because physically you can't do the job any longer.
Sometimes working aggravates the RA process and you need to be aware of those work conditions. Take those breaks and rest. Sometimes working doesn't help the disease process. I would never condemn those people who can't work because of a disease. Most times I applaud them because they've found alternative work or ways to survive without destroying their bodies by doing work that hinders the healing process.
I was fortunate that I could retire. I absolutely don't know what I would have done if I had been younger when a severe onset of RA hit me. If I had still been married we would have survived if I didn't work. But if the onset had hit after my divorce then I probably would have had to live with my parents. I was a newly wed when I was virtually crippled with RA. One day I could walk and the next I couldn't walk to the bathroom. My husband is one of the greatest human beings in my life. I'm blessed.
I am so in awe of each and everyone of you that work everyday with this disease. You have children, husbands, parents, and friends that depend on you.
Everyone has a different story and a different set of circumstances but few of us are laying around the house doped up. For the most part we're still an important part of our communities.
I have actually just gone back to work...i have been waiting for my son to start school, and in the mean time have been diagnosed with RA and AS. But i have worked since i left school. Only took time off to have my 3 children, and went straight back to work after ,maternity leave with first 2!
But i wanted to work, and i find it depressing staying home all day. I only work 6 hours a week at the moment, but its 2 hours mon wed fri morns...cleaning offices and toilets and kitchen at industrial unit! and its physical work and very hot in the factory.
But i am on steroids at gthe moment, down to 1 daily now, due to start methotrexate in a few weeks!
Hopefully i will continue to be ok on methotrexate as i am on steroids, they are fab!
Not being able to work has affected my self-esteem. There are lots of times I've felt utterly useless. I definitely miss the social aspect of working. It gets lonely being at home all day. Hopefully it won't be like this forever.
I have had to go on part-time disability. I was diagnosed 4 years ago and I have been part-time for a year now. I was lucky enough to have a long-term disability plan and I can still work 7 hrs on monday and Tuesday and 3 on WEd. But if I try to do anymore I go into flares.
I would not be able to afford not to work, but I certainly try not to sit around feeling sorry for myself. I do what I can, but I am usually in a lot of pain and I feel so badly for those that must damage their bodies to put food on the table.
I very much agree w/LinB's post. Most of us are not sitting home doped up, at least by choice.
I dont think you should make a nig deal out of it hun...if you feel like you cant work yet, then dont.
I have only been in this job for 4 weeks, but i dont know how i will be when i am off steroids and on methotrexate!
I know since i have reduced the prednisolone i have slowed down consdierably! and i am starting to feel stiff!
But i will do what i can, and if it gets too much then i may have to stop for a while!
I have a desk job that I manage quite well 40 to 50 hours a week.....but it's not physical at all.
I've worked for event planners and florist in the past part time and had to stop that because it became too hard for me.
I used to be a nursing auxilliary, but i couldnt go back to doing that....moving and handling patients would be too much for me...having to keep up with people etc...at least my cleaning job for all its physical i can go at my own pace really, and i dont have to keep up with anyone etc!
That's a pretty cute baby, all right. Okay, out with the old, in with the new!
That's true. Working at your own pace will be helpful.
I do not work out of the home and have not worked for almost 3 years now. I am fortunate that my husband makes enough money to support us. And I never ever take that for granted and show him respect for supporting us every single day.
I admire each and every person that goes out there everyday in pain and goes to work. You are providing some service that someone needs and without you, they may not get what they need.
If I was working I probably would have run out of short term disability by now and would have lost my job since I had such a hard time this winter. I am 3 weeks now out of the hospital from a flare and feeling better. I do not know if I will return to the working force or not. Everything has been so up and down lately with my ra. Grrrr!!!
There will always be the controversy of working mom vs. stay at home mom. Some women HAVE to work thru their ra because they need the income. Some women chose to work thru their ra for other reasons. Like social reasons, self esteem reasons, etc. I feel whatever the choices are that a person has made, they should be respected. I feel there is no right or wrong choice here. I feel it is whatever is best for the individual and their family.
Just because I do not work does not mean that either me or husband can not set an example of working with a chronic illness and pushing yourself to do your job to the best of your ability. I have seen my husband go to work sicker than a dog and drag thru 8 hours of welding heavy steel. My children have seen me barely able to move and still get up and at least do some dishes and pick up around the house. I do have a chronically ill child that pushes herself some days to go to school and stay there. She has vomited her meds in school, took a small break, and went right back to class. I have seen her come home and literally pass out from fatigue. But she will always tell me...I made it thru school mom. And I always tell her how proud I am of her for that.
Who knows if I will go back to work? It is not only a decision for me to make, but my entire family has to weigh in on this since it would affect my entrie family. At this point in life, my work is confined to in home work of a stay at home mom. Let me tell ya, with a pre-teen, a teenager, a husband, a dog, and a few little furry girls around the house, I have enuf work that I can handle right now. I came to finally look at it this way. Maybe this is the plan for my life right now. To be at home and care for my family. Give back to them what they gave to me over the fall/winter and what they continue to give to me on those days I am having it not so good. Maybe I should be home now with the ages my girls are to guide them and help them make the right choices in life. Those teen years are difficult to say the least. I worked out of the home for many years. Now the scope of my work has changed.
I still have to get up at 6am M-F and face the day. I still have work around my house to do. I still wake my husband and send him off to work. I have work to do when my girls arrive home from school. I just don't do my work out of the home. But there are days I slog thru it in pain.
I also have not applied for disability yet. There are many more deserving of it people out there than me. When I get to the point where I think I need it, then I will apply for it. Right now, my goal is to try and get back to work part time this fall. But like I said before, who knows if I will get back to work. I have to wait and see and let my life plans for me unfold as they may.
I have long worked thru the self esteem issues of not working. It was not easy to do and it took me a bit, but I was finally able to do it. Miles, I promise you hunny, what you are going thru right now, you will get to the other side of it. Take your own time doing and do it at your own pace. And it is perfectly normal what you are feeling. Always remember that you are valued by someone in your life and they do not care whether or not you bring home a paycheck or not. They want you well. And if getting well means not working right now, then that is what it means. There may possibly come a time you can return to work. Until then, focus on getting well. If you ever feel the need to talk about it, send me a PM. I would be glad to talk with you about it.
In the end, I feel we all work thru pain in one capacity or another. Whether we are doing it outside the home or in the home, it is still work done in pain, fatigue, and the aggravation of having this stupid disease.
I would love to hear what the guys think about this. How do you guys that are the main income for your families do it?
Whoops, I accidentally posted that last post on the wrong thread...but you probably figured that out.
I worked part time while my kids were in school. Finally when they went off to college I started working full time in a job I love but which is demanding. It was at this time that I got sick and I still wonder if it was triggered by job stress. I am in a very bad flare right now that I know is from stress. But, I have a desk job which is engaging and not physically demanding so I have felt it is a good thing to get up every day and go to be with people doing something I like instead of home in an empty house. I am having to rethink though, because my health continues to deteriorate and my dr. is telling me I should work less. I do work on days I am really too sick because I feel like I am losing the battle if I stay home. Even my feelings about that are changing though, as it becomes more difficult to keep going.
Laker
I'm one of the lucky ones. I have a nice sedentary, desk job with flexible hours! I've also done pretty well on MTX and now Humira so the flares have been pretty far apart and not too bad. The fatigue has been the biggest struggle for me. I have made some compromises. I don't travel as much and take a break midday for some yoga and a long walk. I'm also fortunate in that we've saved consistently for 20 years with the company matching our contributions to our 401k plan so we have a substantial reserve when we need it.
Alan
Hey,I have lived my whole life in joint pain. I don't think I have ever been pain free.
I came down hard with chronic RA my jr year in college. I have worked/gone to school fulltime for 32 years. Mostly it has been good. I like programming, and I like working with business people and other programmers.
I supported my 1st husband, who just was too nuts to hold a job.
My 2nd husband would not accept money form me to pay even part of the household expenses for the first 9 years, then he lost his job and without a college degree in a tight economy he could not find another. He has started his own small business and it is generating some money. But I've supported us for the last 4 years. Next year he will be old enough to collect social security.
I am really tired. I'm in a fair amount of pain all the time. I have no choice about working. I really do not qualify for disability from my insurance or from the government because I am able to do some kind of work (like answer the phone). But it is getting harder and harder and I no longer like my job or the company I work for BUT I need my health insurance and my income so it is off to work I go. My work quantity and quality is way down mostly due to fatigue... it is really hard to be smart and fast when terribly tired and achey. I feel guilty a good bit of the time. The real me is a striver and a committed acheiver.
So I guess I'll just plug along until my company fires me and replaces me with programmers from India. There are 3 absolutes in life - death, taxes and change! It could get better!
I work because I must and because I love what I do. I think I am lucky that I can work right now. I know there will come a day, probably way faster than I want, when I won't be able to work.
I also think that being a homemaker and parent is absolutely one of the hardest jobs in the world. I think that going to work everyday is one way to teach children about responsility and hard work. There are many other ways to do that. I know often times, I am more tired working at home than I am at work.
Phats Just a thought, but if you can hire a cleaner, do it whether you are working or not. I have one come every 2 weeks. Even if you feel good, you can then spend that energy doing something you really want to do instead of wearing yourself out taking care of the house. Its the best thing I've done to cope so far. Laker
For the first time in years, I don't need to work. We don't need the income and my doctor told me to cut back. I can't believe the "funk" that put me in today. But my house is a mess, I am exhausted all the time and in constant pain. To tell the truth, I don't know if it will help or not.
I guess this is a new and interesting stage in life. I am teaching full time this summer, but only a full load of 18 credits (instead of 27 like I am now). I will have to talk to my dean about the fall and may cut back to 15 which is a regular load. It is very scary.
I am on a 2 room a day schedule right now. I rotate the room I am going to clean everyday. I then do a general pick up in all the other rooms. My kitchen gets cleaned daily and then I do the other room I am going to clean. The girls also have their daily chores to do also. I am fortunate tho that we have a pretty small place. Just 2bdr 1 bath. Even when we had a bigger place I still rotated rooms like I do now. For me, it makes it not so despairing and depressing that my house may be messy because I have at least one area clean.
I work full time in full time pain. It is mainly a desk job, but has some aspects that are more physical, and the hours are not very flexible. I have a hard time getting myself together in the morning to be punctual, and I'm absent more than I'd like to be. My boss has been pretty understanding so far, but I don't know how long that will last, especially if I can't get the RA under control. And having so many medical appointments often makes my day even longer.
But I definitely need the salary and benefits, and I like some aspects of it...what I do, the routine, some of the people. I've been working basically full time for the last 20 years and I'm not sure I'd do so well if I had to stop. Last year I was out on short-term disability for my burst appendix (six weeks for the infection, back to work for a month, then another eight weeks for the surgery & recovery), and it was hard on me. But I'm sure if there comes a time when I do need to go out permanently, I would adjust somehow.
The reason I am on part-time disability is that it helps me to be on a schedule at least 3 days a week. I find it hard to motivate myself when I am home and in pain. My RD wanted me to go on total disability, but I am not ready for it yet.
My job is not too demanding, it is usually the pressure I put on myself to get everything done that made me sicker. Now that I hired someone to work the days I am not there and take care of all the filing and other things I can concentrate on the bookeeping, paying bills and banking and I am able to get it done in the time I have without putting so much pressure on myself.
Before I went on disability I was having to miss so much work I was stressed constantly about not being there (one person office) and things not getting done. So for me working part-time and having someone else to do half the work is making everything work, at least for now.
I worked from the time I was 9 years old. I started with running errands, progressed to babysitting, then worked as a waitress, and ran day care from my home til I became a teacher.
I WANT to work. I miss working. When I met mark I was working 3 jobs.
But when I developed cardiomyopahy I became unable to work. I couldnt walk 50 feet without pain and gasping. There was no way I could teach.. My voice even became thin and gaspy and reedy. Kids couldnt hear my instructions.
My heart has improved some, but while it was improving, my RA became severe.
I manage to take care of the babies, because I have to, but there are many days we spend all day in my room, while I stay in bed and they play and watch tv... I havent the strength to do more than that. I cant carry the baby downstairs, I couldnt feed him when he needed baby food..etc.
for some it isnt a choice. If I were in a classroom, I would end up hospitalized in short order. At one point they wanted to do a heart transplant.. I geuss I'm disabled enough to not work.
Since when is taking care of little kids not work? Homemaking used to be a full time honorable job.I work full time, with days off to study for the degree that comes as part of my training for my new job. Most weekends I do one day extra work to try to make up for the low trainee's salary I have right now. I do all this in pain, sometimes lots of pain, sometimes less pain, but always in pain... I am hoping that I can get a bit more relief from pain with meds and then it won't be so much of an issue - until then I push myself and do little else. I do it because I love my work, changing career and re-training was something I wanted to do for ages and I didn't really know too much about what was wrong with me when I started it. Now I'm just too stubborn not to finish - the training finishes in October and I'm going to have a 2 week holiday to sleep before I start my first role after qualifying. I work because I want a nice house and someday a nice lifestyle - one of the first things I'll do when I qualify and get a bigger salary is get a cleaner! One who will do my ironing too... In the last 2 years I have had time off when I was in hospital (3 days) and 1 day when I had a wisdom tooth infection. That's less than most of my colleagues who aren't dealing with a chronic illness. It becomes a matter of pride - I'll do anything to go to work - when I took the day off for my tooth infection it was after I spent 2 days at work totally spaced out on painkillers and just couldn't face another day of it... I do sometimes get frustrated when people in my office take 2 days off for a cold or whatever when I am there all day every day in pain but I realise that they may have their own stuff to cope with and I might not be able to see it just like they can't see my arthritis (most of the time).
I have thought lots about the fact that one day I might not be able to work as much and I'm planning for it, I took on alot buying my house and taking a pay cut to do my training but I won't do that again. I suppose I'm lucky that my employers do all they can to help me and are very understanding, also that here in the UK medical treatment is free to an extent so I don't have to worry about that. My battle with arthritis has made me think about lots of things - I no longer have the same kind of ambitions I used to and I've revised some of my plans fr the future. I can't imagine how tough it is not to be able to work and I only hope that those of you who have managed it are around to help others if we have to cope with it someday...
USED TO BE!!! Sorry, I feel very strongly about this as I was a stay at home mom when the girls were little and then we arranged our schedules so that my husband worked first shift and I worked part time evenings for many years. My main job was still being a homemaker. It is work. Physical work evey single day to care for kids no matter how old they are. Even as they get older as mine finally are, it is still physical work. Picking up, cleaning up, driving them here and there until they can drive themselves (then the worry when they have YOUR car lol), going to assorted concerts etc., and the list goes on.
I would get funny looks when I would tell people I do not work. I got sick of that so I started to tell people when they asked me what I do for a living that I am a Domestic Engineer. I have even had a guy ask me how long I went to school for that lol. The dude was serious too lol. I told him I have spent a lifetime in school and will never be done with it.
I really think the bottom line here is no matter whether we work out of the house or are domestic engineers, we have to do it in pain at times or in some cases..all the time. Either way it sucks. Yeah, I am primarily a stay at home mom. I have worked part time off and on since my youngest turned 3, but I worked at a day care and an elementary school where he was enrolled, so we were actually together for all of those years. He was surprised that I wasn't moving up to the middle school with him, LOL! I really do not regret staying home, or only working in part-time jobs and not placing an emphasis on being a career woman. My life has been extremely fulfilling, and my kids are great sources of pride - they have turned out to be pretty amazing human beings! My time with them has been well spent. Currently I am unemployed and trying to find a job that I can handle physically. I have many things going against me, so I am having a hard time finding a position. I can no longer work at the school or day care because of the amount of walking, standing and in the case of the day care, lifting children and bending over to take care of their needs. So those jobs are out. I am applying for receptionist or clerical positions, but let's face it, I'm not young and pretty, and when I come in with my big fat butt, dragging one leg, potential employers don't say "Wow, I want her sitting out front representing our company".
But now at age 48 here I am, with physical limitations, no job, and not enough work in the last 20 years to really impress anyone. I don't have the option of applying for disability, because the limited amount I worked while raising my children wasn't enough to give me the necessary "credits". So it's clear the government hasn't found any value in the time I spent raising my kids, instead of having someone else do it!
When it comes to others and their prejudice toward women who are stay at home moms, oh it's definitely out there. And you know who treats us the worst? Other women! Nope, I don't find a lot of negativity from the men, but career women can be downright rude. When I would go to my husband's company Christmas parties, the working women treated me as though I was from another planet. They couldn't comprehend how I could possibly enjoy staying at home and being a wife and mother. Or they would say things like, "Oh gee, I wish I could stay home in my PJ's all day and sit on the couch watching TV!!!!" But those were the same types of women who I got to know at the day care center, who would bring their children in pumped full of tylenol and clearly sick, just because they have a really important meeting at work today they can't miss. Of course two hours after the kid arrives it's screaming in pain from an ear infection, and Mom and Dad can't seem to be reached by phone! I don't mean to make generalizations - most career women, or simply working women are not like that. But there are enough of them out there that you do get insulted and feel somewhat of a failure at times.
I really appreciate women who stayed at home with their children. I so wish I could have found a way to be with my kids until they were in school. When my kids were born in the middle 70's people really did come down on you hard for staying home with kids. We were all told we could "have it all". As someone who lived thru those times, I say what a load of crap that was. I was divorced when my kids were 1 and 3 and remarried after 5 years. It was a real struggle, but my kids have turned out to be great people as well, thank God. But I do regret not being home with them. Some of the things the women's movement did to women in my age group (55) was make us feel guilty if we were not working and caused men to WANT us to work and felt as if we were not fullfilling our part of the partnership if we were not bringing home the bacon. At least that is what my 2nd husband thought and he made more than enough to support us, he just thought I should work as well. I think todays young people are figureing out ways to work from home or somehow working out their schedules so that one of them can be with their kids. Also, I believe employers are much more understanding of employees w/families than they were when my kids were little. I had to call in sick in order to take care of a sick child. I could hardly ever attend their games cause it was not ok to take off work. Anyway, didn't mean to go off on a rant.
I am probably more fortunate that most working women, because my husband does the cleaning, shopping and cooking (he's semi-retired and works 2 part-time jobs, his route is made up of mainly grocery stores). It may not be done the way I would do it (ok, it's definitely not done the way I would do it
Hillhoney, even though you don't have enough credits for SSDI disability, you should be able to file for SSI disability, which doesn't require working credits. If you think you will qualify, you should look into it! I am thinking about going back to work. We really need the extra income right now, because we have yet to sell the trailer and we are paying 2 mortgages now. SUCKS! But it has to be done. I am going to try to find a job... wonder if anyone would hire me? I have just wanted to know... can you die from the pain that is caused by working when you are not really able to work to begin with? I mean I can take some pain, but not new pain, when I have new pain I feel like I am going to die, until I get use to the new pain. Innerglow, I don't qualify for SSI because of my husband's salary. On paper we look like we're doing really well, until I start paying the bills! My husband is a consultant, so he is considered self-employed and doesn't have benefits. His life insurance and our health insurance costs are all up to us. That hurts a lot. His solution is for me to go to work full time and carry the health insurance benefits. Well I don't know if I can physically handle working full-time, especially if I have to walk very much, even from a parking lot into a building
I just called and left my name and number for a newspaper carrier position. I know picking up the bundles of papers and sorting them will be tough, but at least once that's done each day I can just sit in my car and drive around to deliver them. Who knows, we'll see if I get a call back! At least he's gotta admit that I'm trying, right? Now if I could just get him to try to find a permanent position with paid benefits. . . Hillhoney, I thought that might be the case, but I figured why not throw it out there. It's amazing how much a family can make and still not have life easy. It's especially true here in NJ...a starter home can run you 0K if you're lucky. But there are some PT jobs that have benefits...my mother works in the floral department of a Shop-Rite supermarket (they may be local) and she got benefits for years as a part-timer (now her boss retired and she's the FT manager of the dept). Even some agencies will provide benefits after a certain amount of time working on their assignments. Hopefully you can find something without heavy lifting! I don't work as such - not in the paid employment sense anyway - I'm a full time student. RA hit at the very beginning of my first year at uni and my doctor wanted me to drop out and reapply in the next academic year. I didn't because I felt I had to carry on to prove to myself that RA wouldn't rule my life. I didn't have to prove it to anyone else, not my doctors, my parents, my friends, my tutors but just to me. I'm proud of the fact that over the last academic year I have only missed one seminar, one lecture and got all my assignments completed on time. I also work as an editior for the university magazine because I love what I do, and I don't want RA to take that away from me. Like Lovie said, while I still can, I will. I think we all work in our own way: Work, like Grammaskittles stated, doesn't always mean paid employment. We all do our bit regardless.
I am in pain everyday. Some days more than others. The fatigue is awful, I do sometimes node off at my desk. I do believe I am doing more damage by working but my husband does not make enough to pay all the bills without my check, so, here I sit.
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