Typical Work for Folks w MS

[shamoneldy]

Hi msaa community and fam

what type of work do folks with MS typically do? I work as a data analyst but I feel with time my mental load gets heavy and the stress is killer. Id love to hear what you do and if it works for you.

[Xvettech]

I do nothing anymore, because I can’t. It sucks bad! I’d rather rather be working so my mind wouldn’t always be thinking of the MS and all that I’ve lost

[shamoneldy in reply to Xvettech]

Xvettech im so sorry thats where you are now. I fear the same. How do you support yourself?

[Xvettech in reply to shamoneldy]

I don’t. I can’t. Thank you government!

I am stuck depending on others. It sucks. Big time! It’s funny they claim we have disability benefits but why is it called a benefit when it can’t even support you? It’s all just a very messed up situation and majorly stinks to have no choice but to depend on others,especially since I loved supporting myself. But this unpredictable fun isn’t even our fault! But we’re the ones who get to enjoy this! :/

[shamoneldy in reply to Xvettech]

So true something has to change 😮‍💨

[NorasMom]

I'm not much help, either, because I also had to quit, but I used to feel that I had the best job. I was clerical support for a large warehouse, and my day was spent alternating between sitting at my desk and wandering through a drafty building. I basically set my own schedule during the day, so I could sit when I needed to sit and walked when I had the energy. It enabled me to pace myself through the course of the day, and I think that's what kept me going for so long. I was also Accounts Receivable, and that's eventually what did me in. When you're getting confused about 2 + 2, it's time to retire. 😢 On a good note, I was able to spend 30 years in that line of work, with another 5 dabbling at other things.

[Xvettech in reply to NorasMom]

I’m glad you liked your work! Too many don’t

I did love mine also! I do say you had best job for you! lol. I had the best one for me! lol! As my name on here I was a vet tech. I did get to hold and pet and calm a lot of animals. I think in turn they calmed me too I love them and am happy I got to work with them.

I do wish everyone enjoyed their work! After all, we have to do it for a long time

[shamoneldy in reply to NorasMom]

Thanks for sharing Norasmom Ive been in my field for 22 years when i was diagnosed I changed to data analyst and work from home. But it can be taxing with deadlines especially at the end of the year. Last year i had an episode and was overwhelmed. As a single mother with one income I get nervous for my future or lack thereof. 😓

[Robsmom]

Sorry, I can't help either. I was an early childhood special ed teacher, but it became too physically challenging. (I didn't know I had MS) Then I became an administrator, I was then diagnosed. Eventually, I couldn't keep up cognitively, fatigue was a big problem. I had to go out on disability.

[shamoneldy in reply to Robsmom]

Oh wow thanks for the reply robsmom in your experience are disability payments enough to live alone or did you have to live with other people to help financially?

[Robsmom in reply to shamoneldy]

Well, actually I had my job lay me off first, so I collected unemployment for a year because it was more money. But, I have been living on just my disability, then social security since 2013. I live in an income based senior apartment and that has helped a lot.

[shamoneldy in reply to Robsmom]

Thanks for sharing. I forgot about those apartments I’ll keep that in mind.

[Robsmom in reply to shamoneldy]

You're welcome. I moved to GA also because their senior apartments were for 55+ and PA was 62+. Also, senior buildings have a percentage of apartments allocated to younger persons with disabilities and MS qualifies.

[shamoneldy in reply to Robsmom]

ooh thanks for that detail. im in FL there are a lot of 55 + communities i will look into them even though im younger.

[Scout4x4]

I along with Xettech do nothing anymore. I also agree that it sucks bad!! I used to be a work acholic 60 hours a week as a distribution manager and am anger every morning when I wake up that I don't have anything to do each day other than taking care of my dog. Day time TV is just mind numbing and I so wish I could go back to work.

[RomCom87]

I worked as the director of a public library for 16 years. I loved my job and I accomplished so much. The Board of Trustees knew that I had MS when they hired me so that was fortunate. I didn’t have to worry about whether to hide my MS or not. So as a result, I had a very supportive board and staff. That was a huge reason why it worked so long for me. Dealing with stress meant spending Saturdays in bed and Sundays doing laundry, etc. I was able to take time off to recuperate. Of course, I was the “boss” so that was another advantage. I did have to resign and go on disability. That was from the stress of a construction project, my husband asking if I was enjoying my job, and my neurologist telling me that it might be time for me to stop working. Then having an MS attack and having to do most of my work from home and finding out I had a new lesion on my spinal cord.

I don’t know what your situation is or if you have any support. I wish you the best and hope that your symptoms subside.

[shamoneldy in reply to RomCom87]

Thank you Romcom. Last year i had to use fmla to take a break mot sure how often i can do it.

[RomCom87 in reply to shamoneldy]

That’s ridiculous! I’m sorry to hear that.

[shamoneldy in reply to RomCom87]

Thanks Romcom87

[Jer29-11]

Hi, I think answers will greatly vary since our progression and outcomes are all different. I became a RN when I was 24 years old and I still work. I work in the operating room. I’m fortunate to only work part time, as I homeschool and am primary caretaker of our daughter.

My job is very demanding both mentally and physically. For now, I’m doing fine, but I went back to school after getting diagnosed so I’d be able to do something else (within the nursing field) if it becomes too much. Hoping to get a job from home eventually ☺️

[NorasMom in reply to Jer29-11]

I don't know about your area, but mine is in desperate need of RN's (as opposed to LPN's and so forth) for supervisory roles. My mother was an RN back in the day but hated it, so she went into the administrative end of it and made a lot more money while sitting at a desk.

[Jer29-11 in reply to NorasMom]

I’m definitely not manager material! On paper yes, but for my mental health no, lol! I have no patience for nonsense. I’m hoping to go in to teaching/education (patient or staff).

[shamoneldy in reply to Jer29-11]

Thanks for sharing Jen29-11

[Jer29-11 in reply to shamoneldy]

Also wanted to share that my neurologist really pushed for me to go back to work. I wanted more time off (first relapse/diagnosis was bad), but he really urged me to go back. He said I’d do better if I went back. I have to say, he was right! It took me a little bit to get back into things, but I did it and I’m so glad I was able to make it happen.

[CatsandCars]

I hope it's not too discouraging to hear that I, too, went on Social Security Disability, or SSDI. Not to be confused with SSI, or Supplemental Security Income, which is different. This is going to be the length of a novel, so I apologize in advance, but I think I can give you a good idea of what you need to know/consider. I was doing customer service/admin for the service/tech support division of a photocopier manufacturer. I had actually been working part time before that, so going full time wasn't an ideal situation. I had assets, though, so I didn't want to blow through all of them to qualify for Medicaid. The overriding concern for me was getting health insurance.

I had been diagnosed not too long before, and I was in my mid thirties, and it hadn't occurred to me that I wouldn't get better, or that I would have to stop working permanently. It never entered my mind. I used strategies like saving the mindless tasks for the end of the day ("data analyst" doesn't sound like a job with mindless tasks), when I simply couldn't think anymore if my life depended on it. It was a desk job, but the workload was insane, and the culture was not forgivingMy stress level was off the charts.

I had a relapse and took weeks off of work. Every time I went back to work, I felt worse. I tried to recover by taking off a Friday here or a Monday there to string together three days to rest, but then the geniuses in management interpreted that as me wanting a long weekend in which to have fun. Maybe my MS fatigue looked like a forever hangover to them, who knows?

I was naiive about how difficult it would be to get disability. All I knew was I was sick and I couldn't physically do my job anymore. So it was a rude awakening when I got all my medical records together, applied using fatigue as a criteria, and was promptly denied. They said my illness "was not medically supportable" even though I had lesions on my brain. I got a lawyer and appealed. Hiring a lawyer was fantastic because it took the burden of dealing with it off of me, which was an enormous relief.

Part of the problem was that they make it really hard to get SSDI on purpose, because there are so many people who try to take advantage. And if you're in your thirties, they're looking at a ton of payments over a long, long, time, so the odds are really against you. My late husband had recurrent cancer, and to their credit, they awarded him benefits right away, just as a comparison. I don't think it helped that I had only been diagnosed a few years prior to applying.

I will be honest. If my current husband hadn't supported me, I don't know what I would have done. I think a lot of people lose everything at this point, because you can't work if you're trying to show that you can't work. So it helps to have a plan - someone to stay with, savings to live off if, etc.

I did eventually get approved two and a half years later, for a reason that didn't make sense to me at the time. I didn't have the records from the university hospital where I was diagnosed, because you had to physically go there, it was far away, and I didn't think there was anything there that wasn't in my records already, including the fact that I had presented with optic neuritis. My lawyer insisted that we get those records, and having the records of being diagnosed with optic neuritis made the difference. So be sure to send all of your records if you apply. Looking back, I can't help but shudder because I don't think I would have been approved without that. I probably would have had to wait, potentially for years, for more lesions to appear, and apply again. And because SSDI lawyers work on a contingency basis (they work for free unless you win, then they get a percentage, which was 30% at the time), they may not take your case if the medical evidence isn't solid. Not that you shouldn't try, of course, and you don't need a lawyer to keep trying.

To see how much you would get if you applied for disability, you can call Social Security, go to one of their offices, or create an online account. There's a waiting period that you don't get benefits for; at the time I applied, it was six months that I didn't get benefits for. But they paid the remaining benefits retroactively (your attorney gets a percentage of this if you use one) for all of the other work that I missed.

I think it would be very difficult to live on disability, but people find a way when they don't have any choice. Luckily, your assets don't come into play like they would if you applied for some government benefits. You would also qualify for Medicare after a waiting period, which I think is two years.

I hope that you'll be able to work for a while yet, and that if you do apply, you'll have enough of a medical history with MS when you apply to increase your odds. It's a difficult enough situation to face not being able to support yourself without the additional stress and uncertainty of having to apply for disability. But you know yourself best, and if/when the time comes, I wish you the best.

[shamoneldy in reply to CatsandCars]

Thank you for sharing Catsandcars what a journey. Its a good tome to develop a plan for if the time comes.

[Tazmanian]

I had to retire from the best job in the world I was a firefighter when I couldn't do the job anymore I retired on disability I now collect disability you can check what your money options are collect what you can and do what you can just keep moving

[CV97]

I transitioned from a teacher's assistant to a remote job 2.5 years ago. That was a lifesaver!

I worked in tech support for 1.5 yrs and now back in customer escalations. The tech support position was definitely more restrictive (30 min lunch, scheduled breaks). The escalations job is a lot more self-managed and has an hour lunch. I'm glad to have that back because I can nap if needed.

It's a little crazy during the busy seasons, but otherwise very manageable.

[shamoneldy in reply to CV97]

i do agree that a remote job is friendlier for disease management. i also take rest time during lunch hour.

[Anais_Hunter]

I work as a marketing executive for a tech company. It's very demanding. What saves me is that I've done the job for so many years that I can take shortcuts and I work from home.

Since the ms diagnotic, I have decided that I cannot have any stress, it's a question of survival. So I either disengage. I carefully decide to ask for more work or not. In many ways, this has reshaped my ambition but I find solace in that my life is more balanced.

[CV97 in reply to Anais_Hunter]

I was just trying to explain this to my boss yesterday. He is encouraging us to consider management positions. Although it pays more, the trade off is potentially longer hours (salary, not hourly) & more stress.

I want to consider that path, but I'm certain the stress alone would be detrimental to my physical health. I've worked hard to recover what I was losing before changing careers. I am scared to go backwards & let stress destroy my body again.

It's just so damn hard to put that into words for someone who doesn't live with MS.

[AquaZumbaFan]

I was in healthcare (X-ray tech 7 years ,CT Tech and special procedures tech for 10 years , then went part time for a good 20 years just doing CT. I still had to take call every Wednesday night the whole time I did CT so that was 30 years. I would have to take Wednesday night and periodic weekend call..I would also have to take or special procedures call for that 10 years that I was doing that every week every Thursday and then the weekend that I was on call I would have to do CT and special procedures.. I was able to keep up with my husband’s help. He would literally drive me to the emergency room and I would try to take a shortcut which was right off The ER . I was only working three days there at the end. it was really really hard depending on what my job was that week some days I would like literally get over 10,000 steps. At the end we were running. Three scanner side-by-side and 24 seven it was so intense.. I totally loved what I did.. I worked in the area where there was very little turnover became your extended family. We raised two kids in the midst of all this and got my youngest to her senior year in college until I was forced to retire on disability. I just couldn’t keep up cognitively with all Procedures, equipment.. broke my heart. Luckily, as I was at the same facility over 34 years. Had a little retirement I had to go out on disability… I was in the workforce since I was a teen so I have a decent disability payment. I have been married for 30 years and he is hoping to retire next year. I retired in ‘21. Now my new job is taking 3 to 4 water classes a week at the gym. I’ve been doing that since December 2021… it is keeping me out of a wheelchair for the most part so far.. oh yeah I got diagnosed and 2001 but it had my first symptoms as a senior in high school

[GodIsAliveAlways]

I was a research nurse but had to go out on soc sec disability. Got it my first application. That was 24 years ago. Hard to remember what it was like to actually earn a living. I miss it so much. Times are getting harder to make ends meet. Unfortunately disability income doesn’t keep up with the prices. I’m blessed though because I have my husband. However he is 16 years older than I and if he goes before me I fear I will end up in the streets!

[shamoneldy in reply to GodIsAliveAlways]

Thanks for sharing GorIsAliveAlways

[shamoneldy in reply to shamoneldy]

*GodisAliveAlways

[GreatDanekids]

I was fortunate to be approved for disability on my first try. The man who made the decision had a mother with MS so he was very aware of the effects of the disease.

I was in outside sales for a large construction subcontractor for over 35 years I loved my job and they continuously made accommodations for me. I worked from home for almost 5 years before they installed a new computer program and I couldn’t retain the new information.

My health did improve without the stress of trying to maintain my level of productivity and I don’t miss it as much as I anticipated.

[shamoneldy in reply to GreatDanekids]

Thanks for sharing GreatDanekids

[MSCoach50]

I'm a High School Football Coach and grass mower. I love working with the kids they help keep my attitude good. I work with people who understand my limitations and care about me. I am just coming off a horrible relapse and missed 9 days...... The only thing my boss told me was to take care of myself so I can get back and do my job and inspire others. I come to work at 5:30 and leave late but the consistent duties keep my mind occupied. Before I was in a mobile scooter and could not stand up.....I got pissed and through intense PT and Water exercise I was able to regain my ability to stand and walk. The overcoming that changed my mindset and I got back into my calling.

[shamoneldy in reply to MSCoach50]

Thanks for sharing MSCoach your story gives me hope ☺️