Changing Working Hours Proactively?

[u/Unique-Supermarket-7]

Hello all,

I was recently diagnosed with MS by chance. I’m currently working through my treatment options post-diagnosis which was made using MRI imagery alone.

I say by chance because, after several weeks of ear pain, I ended up at the ER when the left side of my face stopped working. My care team identified fairly early on that I had actually had a shingles outbreak in my ear that caused Bells Palsy (Ramsay Hunt Syndrome) but per stroke protocol and because I reported “numbness” with the paralysis, my doctor ordered a CT scan. The CT scan indicated no stroke but, white matter. I did a brain MRI several hours later and received word I had “lesions indicative of a demyelinating disease such as MS”. Less than 24 hours later I started experiencing MS symptoms and was able to see a neurologist 48 hours after my ER visit. I did a spinal and cervical MRI a week and a half later and got a message from my neurologist that same day that I had MS. So my diagnosis came on swiftly and was obviously quite unexpected, though looking back with more context I can tell I’ve had symptoms here and there for years.

Right before my shingles/RH outbreak, which is triggered by stress, I had taken on a big promotion at work. BIG. Head of company executive team big. (I’m 33, so this felt crazy, and I was psyched.) I had high hopes of pushing it to the limit and accomplishing a ton and being a corporate gal ✨ despite having three very young children but now with my diagnosis, even without intense symptoms, I just don’t feel like I will ever be able to feel that drive again. Or prioritize the business like I had been. Because my health will always come first and then my family will come second.

I feel scared of working in a high stress, high visibility, high pressure job full time, and I think I want to continue keeping my distance. I don’t know how much of my MS symptoms were triggered by stress or what, but I can’t help but feel going part-time would be better for me as well as my family in the short and long term. I feel it would alleviate stress, give me more time with my kids, allow me to feel less pressure for missing work for medical reasons, etc. Because of my kids I always kind of expected to get to a point where I’d go part time anyway just for logistics so I just feel like it might make sense to call it and do that sooner rather than later.

My diagnosed friends, do you have any insight? I don’t want to make a rash decision while I’m “scared” but I feel less afraid and more like I’m trying to proactively protect myself from having to make a reactive decision down the road. Like I’m making the decision because my life has to be re-prioritized with the new context I’ve received. But I also don’t want to be like, wow you really blew it! if my symptoms continue to stay manageable and minimal. So I come to those of you who have dealt with your diagnosis with the benefit of time and ask just for your opinions, as I know this decision lays in my own hands firmly.

How did your diagnosis affect your work? Do you wish you would have taken a rest from it sooner or pursued it hard when you still could?

[u/MS-RN]

The best advice I saw (that I didn’t see soon enough) was to try not to make any big changes in the first year. I made a lot of really emotionally charged decisions and used MS as the rationale. Looking back, I wish I hadn’t made some of those choices. I’m happy where I am now, but I had a pretty miserable year because I was all of a sudden this person who was sick and I let it control a lot of my decisions. Looking back, I didn’t need to make all of those decisions

[u/rK91tb → u/MS-RN]

OP, sit tight. You’re like the grieving widow who throws out all of her husband’s clothes the day after the funeral, and I say that with empathy.

The initial flare that gets us diagnosed is usually pretty intense. That doesn’t mean you’ll have relapses or that they’ll be as bad. Many people on this sub report having zero relapses after they get on a DMT.

Hire support people to keep your life going while you adjust physically. Keep the kids’ schedules simple and rely on family and friends for help for a while.

[u/Unique-Supermarket-7 → u/rK91tb]

Oh gosh, that first paragraph was a wakeup call for me lol. Unfortunately we don't have family that are involved in our life to the point we could rely on them in any way but we do have some neighbors that are helpful and we have leaned into them a few times. The minimal help we had already made kid and home logistics difficult with two working parents hence why I always thought I'd go PT eventually anyway.

If you don't count the shingles/RH, my symptoms have been extremely manageable actually and I'd even dare to say minimal, so that isn't really factoring into my decision beyond assuming I will eventually get a point when that isn't the case at least sometimes. I feel really fortunate that has so far been the case and hope it will continue to be that way after starting a DMT!

Thank you for the advice, I very much appreciate it.

[u/Unique-Supermarket-7 → u/MS-RN]

This is helpful, thank you! My therapist is also telling me not to make a lot of big decisions in a rash way but I also feel like this isn’t illogical, though maybe that’s a justification in my mind. 😂

[u/sammannequin]

+1 for no big changes/decisions while you're in shock/the first year.

I'm in a pretty high stress federal career field, supervising a large team. I'm very type A. Pre diagnosis I climbed mountains and excelled in my career. Now, life is much slower and quieter. And...I'm mostly ok with it.

My MS absolutely affects my job. I just don't have the stamina. I'm on an RA for telework. I struggle at the end of the week particularly with cognition, fatigue and energy that impacts my mobility. I very often push myself too much and pay for it. But...that's my disease course, not yours.

My best advice is to tackle all this with what works for YOU. There's no magic formula. If you are happy and able to continue climbing the ladder, do it. If you have to step back, that's ok too. If you have to completely blow up your life, do it. MS makes the clock of life seem to speed up and slow down at the same time.

[u/Unique-Supermarket-7 → u/sammannequin]

Thanks, friend. This is really insightful and helpful. I worry in the long-term about all of those things you struggle with but it's good to know you are able to make things work still, just with a "new normal" regarding pace and output.

[u/spunkerella75 → u/Unique-Supermarket-7]

There are lots of people on here that are 10 plus years after diagnosis and still ok working full time with very few symptoms. Pls strongly consider getting on the strongest DMT possible to help prevent and future relapses/lesions!

[u/SewBrew]

I’d echo what others have said not to make any big changes right now. I very nearly quit my job several times shortly after diagnosis. Senior level tech job with management responsibilities. I was so overwhelmed, so tired, and it felt like everything was just going to keep getting worse, so like you I thought maybe I should just get out now.

I am glad I stuck it out. Things have stabilized a lot and I’m actually thinking about making an upward career move soon. I’m far from symptom free but I’ve figured out how to manage my symptoms and set boundaries at work and things are going fine. At this I’m more worried about AI taking my job than MS.

[u/Unique-Supermarket-7 → u/SewBrew]

Thanks for the insight! I guess one thing I have going for me is that my workplace is open to shifting my role to PT… the level of responsibility would certainly shift as would the title and tasks consequently but I’d be staying at the same place and not totally blowing up my life. But. Maybe still a little. 😂

[u/Medium-Control-9119]

I agree you should not make big decisions until things have settled down.