Aa
Do you hold a job and have MS?
How did you decide to stay home or to continue working when your symptoms get too overwhelming?
I'm looking at graduating in August and am hoping that I will be able to enter the work-force again and keep a steady job despite all my symptoms and cog fog. Please understand, I want to work, but the last month has been so rough trying to stay in school and that's only an 8-3, five day a week and studying the rest of the hours kind of job (I personally think it's tough- 16 credits hours can be too much some days) but right now I don't have to be in an office 8-5 everyday and I don't think I can handle that at this point.
Please let me know how it went for you and how you've decided to either stay home or continue in the work-force.
~Sunnytoday~
I'm looking at graduating in August and am hoping that I will be able to enter the work-force again and keep a steady job despite all my symptoms and cog fog. Please understand, I want to work, but the last month has been so rough trying to stay in school and that's only an 8-3, five day a week and studying the rest of the hours kind of job (I personally think it's tough- 16 credits hours can be too much some days) but right now I don't have to be in an office 8-5 everyday and I don't think I can handle that at this point.
Please let me know how it went for you and how you've decided to either stay home or continue in the work-force.
~Sunnytoday~
I should say that lots of people go into remission, not recover! There is no recovering. But many people go into remission for years and years, and practically forget there's anything wrong at all, until twenty years later, when SPMS sets in.
Sorry, I'm a bit of a downer today!
Sorry, I'm a bit of a downer today!
I was diagnosed in March 07. Fortunately I was able to use sick time for the worst of the flare, and worked through the rest. My work definitely suffered, but I managed. Since then, I've had a couple of small flares, but with plenty of sleep and a couple of sick days, I made it through.
Right now I'm in remission, and I'm not always at my best at work. Sometimes fatigue can really get to me. I'm very careful about not doing too much. It makes it impossible to consider raising a child, which I had been thinking about before being diagnosed. I barely have enough energy to work 8 hours, let alone raise a child.
However, everybody's experiences are different. Lots of people recover, and go on to lead practically normal lives.
Right now I'm in remission, and I'm not always at my best at work. Sometimes fatigue can really get to me. I'm very careful about not doing too much. It makes it impossible to consider raising a child, which I had been thinking about before being diagnosed. I barely have enough energy to work 8 hours, let alone raise a child.
However, everybody's experiences are different. Lots of people recover, and go on to lead practically normal lives.
Unfortunately, our beloved men with MS, who are typically and traditionally the main bread winners bear the burden when faced with disabling symptoms. Single moms, too!
We could get into a whole discussion about whether women make as much as men for the same jobs, and things such as that, but let's not, OK? The fact is when the main bread winner is stopped in his tracks with debilitating symptoms, it can be terrifying. For everyone involved, I'm sure.
My husband makes a good living after years of working hard and NOT making a very good living. We are finally able to afford little luxuries we weren't able to before....like the gas bill. But his company does not offer any medical benefits. That rests on me. I really don't HAVE to make much in the way of a paycheck, although it would help us with retirement, which we haven't even STARTED planning! (His new wage will be helpful, though.) So, I need to provide health and dental. That's all. Just benefits. But with my health and fatigue, it feels like a HUGE burden, I must say. I can't imagine what it must feel like for the men, the traditional bread-winners, and single moms!
Maybe some would like to share about that...
Zilla*
We could get into a whole discussion about whether women make as much as men for the same jobs, and things such as that, but let's not, OK? The fact is when the main bread winner is stopped in his tracks with debilitating symptoms, it can be terrifying. For everyone involved, I'm sure.
My husband makes a good living after years of working hard and NOT making a very good living. We are finally able to afford little luxuries we weren't able to before....like the gas bill. But his company does not offer any medical benefits. That rests on me. I really don't HAVE to make much in the way of a paycheck, although it would help us with retirement, which we haven't even STARTED planning! (His new wage will be helpful, though.) So, I need to provide health and dental. That's all. Just benefits. But with my health and fatigue, it feels like a HUGE burden, I must say. I can't imagine what it must feel like for the men, the traditional bread-winners, and single moms!
Maybe some would like to share about that...
Zilla*
Thanks so very much... never worry about writing too much when I ask questions, the more the better, I love to learn and listen!
Everyone answered with a a lot of great things that made me think... our insurance only runs until I graduate from college or unless I'm a full-time student and am ages 18-25. I'm looking into a job that will allow me to code from home online. I'm hoping that I will get work in that facility for my preceptorship (clinicals).
I recieved the possible MS dx about 3 weeks ago and a myriad of symptoms over the past two years. But i've been dealing with chronic illnesses from the time I was 12 or 13 years old and currently have six specialists and a PCP that handled my care even before I went to another 2 extra doctors in April for the MS symptoms that were becoming unbearable.
I'm used to doing without a lot of the fun things others can do or eat, but I've found that laughter is always the medicine when I feel down about the way life is for me.
When I started college I simply wanted to see if I could even do it. Now I can almost say I did. With all of your and my family's support I will do the same thing when I start a job. Just start and see if I can do it. And then after a while, I think I will be able to "hmm... I'm really am doing this."
I'll keep you updated, I'm here every day.
~Sunnytoday~
Everyone answered with a a lot of great things that made me think... our insurance only runs until I graduate from college or unless I'm a full-time student and am ages 18-25. I'm looking into a job that will allow me to code from home online. I'm hoping that I will get work in that facility for my preceptorship (clinicals).
I recieved the possible MS dx about 3 weeks ago and a myriad of symptoms over the past two years. But i've been dealing with chronic illnesses from the time I was 12 or 13 years old and currently have six specialists and a PCP that handled my care even before I went to another 2 extra doctors in April for the MS symptoms that were becoming unbearable.
I'm used to doing without a lot of the fun things others can do or eat, but I've found that laughter is always the medicine when I feel down about the way life is for me.
When I started college I simply wanted to see if I could even do it. Now I can almost say I did. With all of your and my family's support I will do the same thing when I start a job. Just start and see if I can do it. And then after a while, I think I will be able to "hmm... I'm really am doing this."
I'll keep you updated, I'm here every day.
~Sunnytoday~
Hi Sunny!
I understand why this is such an important issue for you, as you embark upon adulthood and assume all of the responsibilities that this entails. First off, I am impressed by your evident maturity and positive outlook as you deal with the fears, annoyances and uncertainties of being ill. That you continued in school through all of this would seem to be an indicator of a high degree of resilience; you will find this to be an invaluable quality as time goes on and you face other challenges in life.
To answer your question, I have been off work on short-term disability since Sept 2007, due to my MS symptoms (was dx’ed last Oct). I am a senior HR business advisor in a large oil company. Being off work has been very difficult for me; I enjoy my work and am (or should I say, was) somewhat of a workaholic. My work involves a lot of detailed research, analysis, and policy and program development. I miss the intellectual challenge that my job provides; the camaraderie and social aspects of work; to some extent, the sense of identity that is inevitably tied to being a professional in a particular field; not to mention, the financial rewards of work. Even just having a regular, predictable routine on a daily basis is something that I miss. A career can be very meaningful and satisfying; it is good to have something to use your brain on, other than thoughts of illness.
When I first went off work, I was in bad shape physically with symptoms, not to mention a bit of a basket case emotionally due to my new dx, so work was out of the question. Physically, what was most limiting was my double vision, fatigue and parasthesias. As these symptoms slowly improved, I was in the process of figuring out the best way to try to return to work, and bam! I had another relapse. I am slowly recovering from that episode.
I still have persistent double vision, frequently severe fatigue, and more recently, severe pain in my left hand, and I have come to accept that this may be my new baseline. If I keep waiting until I feel better before I try to return to work, I may be waiting forever. I have contacted my employer and they are looking for some meaningful work that I can do from home on a part-time basis, to start. This will give me a good idea of what I can handle, and when I may feel well enough to return to the office. If I do make it back to full-time again, I expect I will continue to work a couple of days per week or so from home. I’m lucky to have a position that is conducive to such an arrangement, and fortunate to work for a company that is very flexible and really a leader in accommodating employees with disabilities and other special needs.
As Ess points out, if you are good at your job, many employers are glad to be a accommodating, not to mention it’s the law, at least in the US and Canada. However I can speak from experience working in HR, that employers are certainly more willing to go above and beyond for the hard-working, valued employees than the low performers with poor attitudes. That is only human nature, not to mention good business sense.
I hope that you are able to enter the workforce and figure out a way to adapt to whatever challenges come your way. You have worked hard to get through school and it would be such a shame not to get a chance to use the skills and knowledge that you’ve worked so hard to achieve. Ess also makes a very good point about paying into Social Security as long as you can. Additionally, many employers offer both short and long term disability benefits, as well as drug coverage and other health benefits you may find yourself needing. Being chronically ill can be expensive, and having a regular salary and benefits can mean a huge difference in terms of staying out of debt or at least mitigating it.
I’m with Zilla and Ess, work if/when/as long as you reasonably can. The freedom one gains from working sure beats the lack of it when drawing on disability benefits. I know within my own LTD plan at work, one cannot relocate or even travel out of province for an extended period without permission from the insurance carrier. Frankly that is an arrangement I wish to avoid for as long as possible. The financial rewards from working allow me the freedom and independence that I value so much. When/if one can no longer work, then of course the next best scenario is to have that safety net of disability benefits in place, and not to feel badly about using it when you need to.
Wow, sorry this turned out to be so long and wordy. I do that sometimes! Clearly this is a hot topic for me. Congratulations on your pending graduation and good luck with your job search. You are a young woman with a great attitude, a supportive family, an education and a bright future. I wish you the best. I hope you keep us informed as to your plans and successes.
db
I understand why this is such an important issue for you, as you embark upon adulthood and assume all of the responsibilities that this entails. First off, I am impressed by your evident maturity and positive outlook as you deal with the fears, annoyances and uncertainties of being ill. That you continued in school through all of this would seem to be an indicator of a high degree of resilience; you will find this to be an invaluable quality as time goes on and you face other challenges in life.
To answer your question, I have been off work on short-term disability since Sept 2007, due to my MS symptoms (was dx’ed last Oct). I am a senior HR business advisor in a large oil company. Being off work has been very difficult for me; I enjoy my work and am (or should I say, was) somewhat of a workaholic. My work involves a lot of detailed research, analysis, and policy and program development. I miss the intellectual challenge that my job provides; the camaraderie and social aspects of work; to some extent, the sense of identity that is inevitably tied to being a professional in a particular field; not to mention, the financial rewards of work. Even just having a regular, predictable routine on a daily basis is something that I miss. A career can be very meaningful and satisfying; it is good to have something to use your brain on, other than thoughts of illness.
When I first went off work, I was in bad shape physically with symptoms, not to mention a bit of a basket case emotionally due to my new dx, so work was out of the question. Physically, what was most limiting was my double vision, fatigue and parasthesias. As these symptoms slowly improved, I was in the process of figuring out the best way to try to return to work, and bam! I had another relapse. I am slowly recovering from that episode.
I still have persistent double vision, frequently severe fatigue, and more recently, severe pain in my left hand, and I have come to accept that this may be my new baseline. If I keep waiting until I feel better before I try to return to work, I may be waiting forever. I have contacted my employer and they are looking for some meaningful work that I can do from home on a part-time basis, to start. This will give me a good idea of what I can handle, and when I may feel well enough to return to the office. If I do make it back to full-time again, I expect I will continue to work a couple of days per week or so from home. I’m lucky to have a position that is conducive to such an arrangement, and fortunate to work for a company that is very flexible and really a leader in accommodating employees with disabilities and other special needs.
As Ess points out, if you are good at your job, many employers are glad to be a accommodating, not to mention it’s the law, at least in the US and Canada. However I can speak from experience working in HR, that employers are certainly more willing to go above and beyond for the hard-working, valued employees than the low performers with poor attitudes. That is only human nature, not to mention good business sense.
I hope that you are able to enter the workforce and figure out a way to adapt to whatever challenges come your way. You have worked hard to get through school and it would be such a shame not to get a chance to use the skills and knowledge that you’ve worked so hard to achieve. Ess also makes a very good point about paying into Social Security as long as you can. Additionally, many employers offer both short and long term disability benefits, as well as drug coverage and other health benefits you may find yourself needing. Being chronically ill can be expensive, and having a regular salary and benefits can mean a huge difference in terms of staying out of debt or at least mitigating it.
I’m with Zilla and Ess, work if/when/as long as you reasonably can. The freedom one gains from working sure beats the lack of it when drawing on disability benefits. I know within my own LTD plan at work, one cannot relocate or even travel out of province for an extended period without permission from the insurance carrier. Frankly that is an arrangement I wish to avoid for as long as possible. The financial rewards from working allow me the freedom and independence that I value so much. When/if one can no longer work, then of course the next best scenario is to have that safety net of disability benefits in place, and not to feel badly about using it when you need to.
Wow, sorry this turned out to be so long and wordy. I do that sometimes! Clearly this is a hot topic for me. Congratulations on your pending graduation and good luck with your job search. You are a young woman with a great attitude, a supportive family, an education and a bright future. I wish you the best. I hope you keep us informed as to your plans and successes.
db
Thank you for your nice reply!
I have to say, I agree with ess, as I usually do. Great information!
I also wanted to add, that most of the people on the forum who are not working right now do seem to have an additional diagnosis which adds to their disability.
T-Lynn, for one has had myriad problems with spine surgery complications, and now has the added diagnosis of AA. I daftly forget the first 'A.' THe secocond is Arachnoiditis. Could it be 'Autoimmune?' I do know it is VERY painful and limiting.
Quix was diagnosed with Autoimmune Inner Ear Disease(?). It in itself is very debilitating with its effects of vertigo. She is a pediatrician. She always says she WAS a pediatrician, but I feel ONCE a pediatrician, ALWAYS a pediatrician. Can't wriggle out of THAT diagnosis! She was diagnosed later with MS, which compounds her disability, as you can imagine.
There are others here who have Primary Progressive MS who find it impossible to work, or those who have never worked before. They do their best to pace themselves with their activites to enjoy their lives as they did before the effects of their disease robbed them of the luxuries of control of their own bodies and the feeling of restful sleep.
I'm sure this diagnosis has hit you hard. You're just on the cusp of discovering what you can make of yourself, and it must seem as if someone has put an anchor around your neck (and plugged it into a wall socket!). I know that many MS patients in fact CAN work and very productively. You've proven that you can get through the grueling process of that last year of school and exams, and flourish. That says a lot! Be proud of yourself!
Take some time and consider what you want to do, but please don't let this insipid disease quash any dreams you had when you enrolled in school. In the wise words of one of my dear friends, "Keep on keepin' on, Sister!" while you can.
Good luck!
Hugs,
Zilla*
I have to say, I agree with ess, as I usually do. Great information!
I also wanted to add, that most of the people on the forum who are not working right now do seem to have an additional diagnosis which adds to their disability.
T-Lynn, for one has had myriad problems with spine surgery complications, and now has the added diagnosis of AA. I daftly forget the first 'A.' THe secocond is Arachnoiditis. Could it be 'Autoimmune?' I do know it is VERY painful and limiting.
Quix was diagnosed with Autoimmune Inner Ear Disease(?). It in itself is very debilitating with its effects of vertigo. She is a pediatrician. She always says she WAS a pediatrician, but I feel ONCE a pediatrician, ALWAYS a pediatrician. Can't wriggle out of THAT diagnosis! She was diagnosed later with MS, which compounds her disability, as you can imagine.
There are others here who have Primary Progressive MS who find it impossible to work, or those who have never worked before. They do their best to pace themselves with their activites to enjoy their lives as they did before the effects of their disease robbed them of the luxuries of control of their own bodies and the feeling of restful sleep.
I'm sure this diagnosis has hit you hard. You're just on the cusp of discovering what you can make of yourself, and it must seem as if someone has put an anchor around your neck (and plugged it into a wall socket!). I know that many MS patients in fact CAN work and very productively. You've proven that you can get through the grueling process of that last year of school and exams, and flourish. That says a lot! Be proud of yourself!
Take some time and consider what you want to do, but please don't let this insipid disease quash any dreams you had when you enrolled in school. In the wise words of one of my dear friends, "Keep on keepin' on, Sister!" while you can.
Good luck!
Hugs,
Zilla*
Hi. I sent you a note but want to add to that.
My advice is to work if you possibly can. At some point that may require some accommodations by your employer, but that's nothing new, and particularly if you're good at your job they'll be glad to do it.
I advise this from two perspectives---You will be much happier and feel like a part of the human community if you're in the workaday world, despite all its hassles. You will be using the skills that you've worked so hard to obtain in college.
But secondly, and just as important, the longer you work and paarticipate in Social Security, the better your benefits will be if you need to apply for Social Security Disability at some future point. This is a serious financial consideration for sure. If you
never pay in, you will be eligible for nothing.
That sounds grim for a young girl like you, and I don't mean to depress you at all. I'm betting that you have a big and happy future coming up soon, regardless of health problems. But just keep all this in mind as you plan things.
Best of luck,
ess
My advice is to work if you possibly can. At some point that may require some accommodations by your employer, but that's nothing new, and particularly if you're good at your job they'll be glad to do it.
I advise this from two perspectives---You will be much happier and feel like a part of the human community if you're in the workaday world, despite all its hassles. You will be using the skills that you've worked so hard to obtain in college.
But secondly, and just as important, the longer you work and paarticipate in Social Security, the better your benefits will be if you need to apply for Social Security Disability at some future point. This is a serious financial consideration for sure. If you
never pay in, you will be eligible for nothing.
That sounds grim for a young girl like you, and I don't mean to depress you at all. I'm betting that you have a big and happy future coming up soon, regardless of health problems. But just keep all this in mind as you plan things.
Best of luck,
ess
Thanks so much for the wonderful post... my family (parents) will be there for me if I'm unable to work... but you know that I'm going to try. I'm glad that your family pitches in and helps so well, that must make your days go so much smoother!
I hope that you are able to get the job you are applying for! I'm also looking at one in a large hospital! :)
I understand about the insurance thing, I'll be old enough (20) that the student insurance I had under my parents will lapse so it's important that I find a job pronto after grad.
Hugs,
~Sunnytoday~
I hope that you are able to get the job you are applying for! I'm also looking at one in a large hospital! :)
I understand about the insurance thing, I'll be old enough (20) that the student insurance I had under my parents will lapse so it's important that I find a job pronto after grad.
Hugs,
~Sunnytoday~
Hi, Sunny~
First, congratulations are in order! Good for you, for getting through school! I know you haven't felt well, and that it's been difficult with your cog fog. So, big pat your back, Sweet Thing! Great accomplishment!
Second, I don't have MS according to any doctor that counts, so this may mean nothing to you. I DON'T feel well a lot of the time lately and fatigue can get the best of me most days. I have five children who count on me when my hubby's out of town and I'm ready for bed when I get home from work.
BUT ~ I do have teenagers who help with the younger ones, and I'd never want to miss out on baseball games, basketball games, helping with homework, plays at school.... My situation is a little different. I do the things I need to, want to and then crash at the end of the night. Sometimes I don't get everything done that I think I 'should,' but then hubby comes home on the weekend and helps. Or he comes home and we relax, and don't worry about it until the next weekend...
Right now my family depends on me for health and dental insurance. So, I feel pressure to work. My work situation at present is not good. My boss doesn't 'get' that I'm sick, especially with no real diagnosis. So, I'm interviewing for a new job next week. At a huge hospital, where they would be more understanding if I couldn't walk. Oy.
I'm glad to do this, to show my kids that you work while you can. To contribute for my family. For my husband. Until there is a change in our situation where I can stay home and be an active church and school and community volunteer.
It seems a shame that you've put so much effort into your education to let it go without seeing what you can do with it. To test your mettle. I completely understand the cog fog thing. I went through a terrible time with it for several months. I couldn't even think what to say when I answered the phone at work (the name of the doc I work for, who's been a family friend for over a decade). Maybe that will get better now that the pressures of exams are over. Maybe not.
Give yourself some time to think about what you will do. THis decision does not have to be a permanent one. It may take you a while to decide. Think about how you are feeling -- physically and emotionally. Be proud of yourself for your accomplishment, no matter what. You've been through a lot. Done a lot, with the obstacles in your way.
Feel well,
Zilla*
First, congratulations are in order! Good for you, for getting through school! I know you haven't felt well, and that it's been difficult with your cog fog. So, big pat your back, Sweet Thing! Great accomplishment!
Second, I don't have MS according to any doctor that counts, so this may mean nothing to you. I DON'T feel well a lot of the time lately and fatigue can get the best of me most days. I have five children who count on me when my hubby's out of town and I'm ready for bed when I get home from work.
BUT ~ I do have teenagers who help with the younger ones, and I'd never want to miss out on baseball games, basketball games, helping with homework, plays at school.... My situation is a little different. I do the things I need to, want to and then crash at the end of the night. Sometimes I don't get everything done that I think I 'should,' but then hubby comes home on the weekend and helps. Or he comes home and we relax, and don't worry about it until the next weekend...
Right now my family depends on me for health and dental insurance. So, I feel pressure to work. My work situation at present is not good. My boss doesn't 'get' that I'm sick, especially with no real diagnosis. So, I'm interviewing for a new job next week. At a huge hospital, where they would be more understanding if I couldn't walk. Oy.
I'm glad to do this, to show my kids that you work while you can. To contribute for my family. For my husband. Until there is a change in our situation where I can stay home and be an active church and school and community volunteer.
It seems a shame that you've put so much effort into your education to let it go without seeing what you can do with it. To test your mettle. I completely understand the cog fog thing. I went through a terrible time with it for several months. I couldn't even think what to say when I answered the phone at work (the name of the doc I work for, who's been a family friend for over a decade). Maybe that will get better now that the pressures of exams are over. Maybe not.
Give yourself some time to think about what you will do. THis decision does not have to be a permanent one. It may take you a while to decide. Think about how you are feeling -- physically and emotionally. Be proud of yourself for your accomplishment, no matter what. You've been through a lot. Done a lot, with the obstacles in your way.
Feel well,
Zilla*
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