Work, Stress, and Decisions (sorry, long post)

[malaholic]

As I start to write this, I'm not really sure if I am looking for advice, or more just to vent my personal musings and conflict. I guess we'll see where the thread goes...

I work in engineering management at a large corporation. I've been there for going on 15 years now and have done reasonably well for myself. Starting several years ago, my enjoyment of the job began a slow and steady decline, for typical reasons...stress, politics, long hours, etc. I've gotten disillusioned with working on new shiny stuff that I know will be obsolete in 2 years when the next new shiny stuff comes along.

I've also found it increasingly difficult to stay on top of the ever-changing landscape of technology - and in retrospect, I think much of that has to do with focus/memory/cognitive issues that I now believe are linked to the disease. It's taking me longer to do my work, which means I work more hours, which means I feel more stressed, which makes my symptoms worse. It's a vicious cycle.

Over the last 2 years, pre-Dx, I'd given some pretty serious thought to stepping away. Quitting for a year or two, doing some volunteer work, spending more time with family, making myself a better and happier person - and then deciding whether I wanted to ever go back, or find a new direction (more likely the latter). My husband was supportive of the idea. I'd definitely miss my salary, but we could get along fine on his. Last year I was almost ready to pull that trigger, and I was waiting for the end of our review cycle so as to still be eligible for an annual bonus...and then I got Dx'ed. And that changed everything.

My job pays a good salary and offers good health insurance. I'd be eligible for short-term or long-term disability should that become necessary. And now I also feel a need to try and stash away as much money as I can to deal with inevitable healthcare costs. So now a part of me feels I should just 'suck it up' and hang in there for as long as I am physically capable, even if I'm mentally miserable.

The other part of me is concerned that staying put is going to hasten my MS decline. The much more severe flare which ultimately led to my Dx hit me during an extremely stressful period at work - which is a regular occurrance. I have zero doubt that the stress is at least a partial contributor - and probably a major one - to the increasing severity and frequency of my issues.

This disease and the uncertainties of the future have really thrown me and have left me feeling a much greater conflict between my financial needs and my personal health/sanity needs. Should I stay or should I go?

Who has been in a similar situation? Any advice/experience to offer? Has anyone taken the big chance of just leaving and been happy they did? Or regretted that they did? Am I stupid for even still considering walking away from the job? I'm just feeling a bit lost right now.

[Waydwnsouth1]

Malaholic you certainly have a lot to consider. Bottom line is you have to do what you feel is best for and your family,IMHO. I struggle with the same issues but the difference in my situation is I can't afford to just walk away. At one time I could but thanks to MS that's no longer an option.

Stress can definitely cause problems with your MS. I know that first hand. That being said, if you can afford to walk away and that would make you happy and your spouse supports you than I would walk away. I know I would if I could. It sure would make my life less stressful.

It's bad enough having to deal with this dreadful disease and to be in a position you are not happy with. Take the leap and be happy. Again, that's exactly what I would do if I could.

[rdmc]

Just a thought about SSDI.

I don't know how old you are, so that would have a lot to do with this problem. But to receive SSDI, you need a certain amount of "credits" (so many working hours equal a credit)...but the problem is 1/2 of the credits needed have to be earned in the last 10 years. So if you drop out of the work force for more than 10 years, I think there might be a problem should you need SSDI.

When I was diagnosed, I had not been in the work force for 14 years. When our son was born, I became a SAHM.
I had worked 15 years before that time, but by being out of the work force for those 14 years, I would not have been eligible for SSDI. So I guess I did the opposite of most folks, when I was diagnosed, I found a job just in case I would have to apply for SSDI down the road.

I still have the job, but I work entirely from home, so it's easier to manage...and I've been at it for over 10 years, so I've earned back more than enough credits for SSDI, should I need it.

Just a consideration, and there may be a way around the credits in the last 10 years, but I didn't know about it...here's a link to the SS page explaining it.

http://www.ssa.gov/dibplan/dqualify2.htm

[Piper79]

Sounds like you work for a large company.

Could you work part-time? Can you retain your benefits at 30 hours per week?

Could you down-grade to a less stressful position to (a) retain some income, and (b) maintain your benefits, esp'ly ltd?

Is another middle ground possible? Instead of leaving and giving up income/benefits vs. staying and being stressed, perhaps there is a middle ground?

[MarkLavelle]

I've gotten disillusioned with working on new shiny stuff that I know will be obsolete in 2 years when the next new shiny stuff comes along.

I'm a 30-year veteran in the tech industry and I know exactly what you mean. These days I tend to be suspicious of co-workers my age who aren't burnt out...

I can't comment on the cognitive angle directly, but I firmly believe that brains need exercise. Unfortunately, most sufficiently challenging/engaging jobs tend to bring the stress with the 'exercise'. I think the part time suggestion is the way to go if you can pull it off (but I also assume that's difficult for a manager).

Stepping out for a year or two sounds great, but I suspect that the industry pace would make it hard to get back to where you are now when you return.

I don't worry much about hastening my MS decline, but I do worry about losing mobility before I get a chance to enjoy it. I'm almost 59, and my job provides the insurance, so we have been thinking in terms of how much we need to save to cover the hole between quitting and hitting 67 (SS, 401k & IRAs should cover the rest pretty well).

[RGI]

Hello. this is my first post.
In fact, this is the first time I have ever joined any health related forum!
OP - I cannot answer this for you. Why might you ask? Because it is as if I wrote this.
I showed to my GF and she said that she thought I was the author.
This inspired me to join this forum.

I was diagnosed some years ago. I collapsed and was not able to walk or talk. After a few nights in the hospital and their standard treatment of solu-medrol I recovered and reviewed my MRIs. I had taken any meds post diagnosis for about 1.5 years. Had only one minor relapsing occurrence which I cleared up with a few shots...60MG of Kenalog (triamcinelone acetonide aka nasocort!!!) and I believe 60mg of Toradol...but would have to double check the dosage on the later. I started taking Copaxone and it tore me apart. Post MRI I had twice as many holes in my brain. Neuro told me to stop taking. Had about 13 relapses while on copaxone! Started Tecfidera and almost 4 months in and had 2 relapses. I'm not taking these poisons any longer. I still have a month's supply of Copaxone and 3 months of Tecfidera. Can't deal with it.

OP - Point is, we are the same actually. Same boat. Except my GF doesn't work. She could, has a Masters degree and is extremely intelligent. I have supported us both but that time is coming to an end. I'm 34 and have been extremely blessed with success. I often think about retiring now but just can't sit still. I will tell you this. STRESS is a killer for those of us with this auto-immune complication.
I can tell you this. I'm onto the road to recovery. 2 days ago I was not able to walk or even lift a jug of milk. I just lost 25 lbs in the past 3 weeks because of the poison's affects and my nervous system was just shot. Pretty rough when you go from hero to zero. I used to be about 190 lbs very solid and now i look like skeletor. Do what you can and do what makes you happiest. Because stress is the killer. I am now seeing a new pain managment/wellness specialist and I will try to use HGH for the next year along with some natural stuff (TBD) to see if it repairs and helps. I have nothing to lose at this point except my life....
I have been working non-stop since I was of age so I have enough credits for SSDI and I have put quite a bit in.
Sleep on it. Give yourself a realistic goal like 6 mo. to a year. You can always opt out before then.
Didn't mean to hijack a thread...Just wanted to let you know that you're not alone and you have a twin.
take care.

[Jules A]

When MS came a calling I amped up my career and although I am exhausted every second that I'm not working my butt off I don't regret it.

My net worth has increased significantly since my diagnosis and for me the stress of not being able to make and save money would be far worse than the stress I feel working so much.

We are all different but for me there is no question. I plan to either work until I'm 62 years old or no longer able either physically or because I have lost my mental edge. I hate this disease.

[RGI]

I forgot to add...

Think about the health insurance part.
I'm not sure what meds you are on, if any. But I do know that they (or most) cost as much as one would earn per year provided he did not eat, drive or have dwelling! Ridonkulous!
I don't know ANYTHING about SSID...like I said, I'm 34. Heck even at 18 y/o I didn't know you had to pay taxes until I was about 21. Needless to say our "uncle" and his wife Iris didn't treat me too well.........
The point is, make sure you get that end covered. I know it's hard to know the future of things especially when it comes to healthcare, but we no longer have to worry about the "pre-existing conditions" condition. However, with the way these fake political party rivals fight and overturn what the other has done etc. we REALLY CANNOT be certain of anything. Don't take it for granted. I CAN tell you that SS will go away probably before I'm 60ish....if I were to live that long.
So be prepared and start this preparation while you are sleeping on it like I previously suggested.
AND...it could always be worse. A co-worker was diagnosed with throat cancer. Went through Chemo. During chemo his 2nd wife diagnosed with a terminal stage cancer. She died weeks later. His first wife died 8 years prior from cancer. Today I learned he on his second round of chemo because the cancer had spread after first round. He only his dog. I dislike dogs. To me they're obnoxious and too high maintenance. I like cats. But when I read the line in one poster's signature above I started having tears. Because THE ONLY thing that got me through this past monday was thinking about this guy and his dog. It's hard to put into words....although it's my lord's doing and his test that I'm going through and the strength comes from him, I feel like I owe my co-worker so much because this is the 2nd time that I thought about just being complete done with this disease in the past month and the 2nd time he's come through. SO, IT COULD ALWAYS BE WORSE

That signature quote was:

"He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
Anonymous"

[OTT3339]

I won't give you any recommendation...but I can relate.

I work for a (very) large company and have good benefits. I had no idea what was coming (I had had symptoms that I had sought treatment for before I was diagnosed). I did a week of steroid infusions. I felt like I had been run over by a truck but I spent the week sitting on my cell phone in the infusion center negotiating with lawyers, banks and partners. I even asked for a room at one point and the center manager gave me her office.

Six weeks later I felt almost as good as new and was promoted soon after (more work than the last role). Fast forward 6 months and I got hit with a flare and the fatigue was back. The fatigue was crushing. No steroids this time and the fatigue dragged on for months. It got to the point where I felt much the same as you do. I was having difficulty keeping pace, things were slipping and I could not maintain interest or focus on my job, to the point it began impacting my performance.

I had already told my employer earlier (in my case I trust my manager and my company) that I had been diagnosed. My manager came to me and asked me what was going on. I explained the situation to him and he was surprised. We had talked on and off since I was diagnosed. He would ask me how I was doing and I would generally respond "OK". The adage says - there is nothing more boring than a man who when asked how he is actually tells you LOL...and I really just did not want to get into long discussions about everything going on with me every time he asked (although he would have been genuinely interested and concerned).

Once my current situation all came out we agreed to engage HR. It all went relatively smoothly. They asked me what I wanted from a career perspective. They let me step out of my roll into one less stressful with less required OT. I kept my salary and they kept me reporting in to my same manager. Stress levels have gone down and flare has subsided. I do still have residual effects which are likely permanent and I have ongoing cog and focus issues.

In the end I am relatively happy with the way things unfolded. I am happier with my employer than I would be at home but I also recognize the toll my prior roll was taking on me. I have better work/life balance and more time to enjoy with my family which helps with the stress.

There have been moments that are tougher than others, where I worry about the future...but I am developing a completely new perspective on what is important to me.

Side note: HR and my manager agreed to not let my diagnosis become general knowledge (and to date I am sure only a limited number of people know). I did tell my direct reports why I was stepping out of the role. I told them I felt it was right to tell them but I would appreciate if they kept it to themselves (I am confident they have).

[pennstater]

I know exactly y how you feel, having worked in technology. I am now 51 and stopped working just shy of 50. A lot of stress, project planning, changing technology, and extra hours to try to keep up.

Prior to making that decision, I had asked my employer for a few accommodations. I was able to work from home as often as needed, even if 5 days and able to take longer lunch breaks, working later to rest some during the day. But even with this, my symptoms were too active. So I made the decision to stop. Some things to consider:

1. Can you think of any accommodations that could make your job workable? You can work with an occupational therapist to see.

2. Since you have said cognition may be a problem, have you had a neuropsych aviation? It can ID problem areas, and again, strategies and accommodations to help.

3. You should become very familiar with your firms FMLA, STD, and LTD policies. There is an emoyment folder where many threads related to issues exist. If you do get LTD, any SSDI collected is usually offset, meaning the LTD insurance carrier pays difference between LTD benefit And SSDI. Additionally, if you change employer, many LTD policies have a clause that would deny you benefit if you claim disability in 1st 2 years for pre existing condition. Likewise, if you have option to buy more coverage, often pre existing condition denies the extra coverage .

4. If you consider change in jobs, is it realistic. My boss and I discussed it, but by nature, he was concerned I would do more than required, not really alleviating stress.

5. If part time, you may lose your health benefits as well as STD and LTD and if more than certain amount, can not collect SSDI. Your future SSDI and retirement earnings will be lower since your wage is lower. I wanted to go part time and employer was willing, but too much financial risk if I couldn't work at least another 10 years.

6. Staying home an be stressful and isolating, so you need to have plans to keep yourself out of emotional trouble.

I would discuss with your neuro, as anything you do, may need their support. They can also help guide you as I am sure they have had many patients go thru this. I do think neuropsych is good to get, even if you decide to keep working. I had a baseline done after diagnosis, so changes were evident later.

Good luck to you.

[Mamabug]

Venting is fine.

SSDI, although choosing to apply was a very difficult decision for me, has been a blessing.

I no longer have the stressors of being employed. And, the government pays me for doing what I choose to.

If SSDI is an option for you, I encourage you to consider it.

[malaholic]

Many thanks to everyone for the thoughtful responses and empathy.

Several of you have mentioned SSDI and with the provided links, this is the first time I've looked into those requirements. It is helpful to know a little more about the credit system. I am currently 36 years old, RRMS, and when not in a flare, my symptoms would be considered mild compared to what many on this board experience; I'd not qualify for SSDI disabled criteria. And I hope not to, for as long as possible. But it's a good reality check to realize I'd need to have more recent work history at the time that I would; and also that SSDI benefits would be greater if I were somehow able to keep higher salary.

[malaholic]

hit post on accident...

...so, continuing where I left off:

Piper79, you and others have mentioned the possibility of a part-time or otherwise reduced position. I have been wondering about whether I could do that and still retain benefits. It's not completely clear to me when I read our company policy; I'd need to confer with HR about that. I suppose it could be a possibility, but it would be very much the exception rather than the rule. I have been reluctant to approach either HR or my management with these questions, as it would mean disclosing my condition; I've not been sure whether that would be advisable or not - in a different thread on this site I saw most people advised not to disclose. OTT3399 - it sounds like you've had a very beneficial experience going this route; and that is pretty encouraging. Perhaps I should give this middle ground option some more thought.

I should also mention that if I were to lose my employer-provided health insurance either because I quit or went part-time, that I could then be covered under my husband's plan. His plan would be financially about the same, just a slightly smaller physician network and I'd have to switch neuros, or pay more to stick with my current one out-of-network. So insurance wise there is a "plan B", but losing the STD/LTD pay should I someday require it would be a loss.

PennStater - your point about emotional impacts of being isolated at home is well-taken. Were I to leave, even as I'd thought about doing pre-Dx, I'd planned on doing some part-time volunteer work at a nearby wildlife rehab center (I adore animals), and also on occasion doing some photography work, which I find fulfilling (I've been doing occasional weekend photography gigs for a couple of years now). I'd spend a bit of time daily on exercise for both me and the dogs, and I'd spend a bit more time getting the rest I need. Right now by the end of the work week I'm so totally and completely drained that I end up sleeping about 15-16 hours a day on the weekends. JulesA, it sounds like you are in that boat as well, voluntarily. I agree that building up the financial nestegg provides some good peace of mind - that's the reason my Dx altered my original plan to step away - but after a few years of this I'm not sure it's sustainable for me. (At least now that I have the Dx I know more about *why* I'm so exhausted all the time...)

RGI, thank you for your empathy! While I wouldn't wish anyone to be my "twin" because of the illness, I am glad that the post may have encouraged you to join this wonderful forum, and I hope you'll come back often. You are 100% right that it can always be worse. I hate having this disease, but I try to stay positive and grateful that I am still generally still doing quite well. I myself am acutely aware of all the things about my body that are not quite working right, but no one else would be able to notice yet. I hope that your change in treatment is very successful. I have been on Copaxone for 3 months now. Too early to tell if it's working but I have adapted and the drug doesn't bother me anymore. I also started LDN 2 months ago; it seems to help with energy a bit. Just not enough. I'd prefer not to have to take too many other drugs to deal with symptoms unless/until I have to.

MarkLavelle, I hope that you will have mobility to enjoy for a good long time! In the past I've not taken as much vacation time as I've earned, so I lose it. This year I fully intend to take my vacation time and visit some bucket-list places while I am able to do so and enjoy it.

Waydwnsouth1, I'm sorry you are also feeling this type of stress. There are no easy answers, huh?

Well, time to go sleep on this. Tomorrow perhaps I'll try to do a little more research into part-time benefits, before I'd even consider asking HR for a new role/reduction in hours. I expect it will be some time before I reach a decision here, but of course I will keep you all posted!

Again I appreciate all the input here. This board is really fantastic and I'm so glad I joined!

[Piper79]

...so, continuing where I left off:

Piper79, you and others have mentioned the possibility of a part-time or otherwise reduced position. I have been wondering about whether I could do that and still retain benefits. It's not completely clear to me when I read our company policy; I'd need to confer with HR about that. I suppose it could be a possibility, but it would be very much the exception rather than the rule. I have been reluctant to approach either HR or my management with these questions, as it would mean disclosing my condition; I've not been sure whether that would be advisable or not - in a different thread on this site I saw most people advised not to disclose. OTT3399 - it sounds like you've had a very beneficial experience going this route; and that is pretty encouraging. Perhaps I should give this middle ground option some more thought.

I agree with the advice not to mention your condition. I do not think you have to disclose. You could indicate any number of reasons why you want to work less: extended family commitments, volunteer pursuits, need to reduce stress for general well-being. At my company, benefits are retained at 30 hours per week. Another consideration, mentioned above, is working from home even part of the time. Not sure how long your commute is, but that could potentially save you some stress right there.

[Jules A]

Please keep us posted!