What's Next Chapter?

Feeling ok after getting over six weeks of being pretty sick. I have Pustular Psoriasis, Nail Psoriasis, Plaque Psoriasis, Fibromyalgia, Hypothyroidism, and Crohn’s. These autoimmune diseases never like to travel alone. I have always worked full-time in a high-stress job, am completing my second Masters’ program, and I serve on a couple of nonprofit organization boards. This has been my norm for 20+ years. After getting very sick six weeks ago and ending up in ICU for four days, I think it is sinking in that this pace will not be sustainable in the near future. I am distressed trying to figure out what life will look like. When I got sick, it was devastating. Not enough energy to even make my bed in the AM or take a shower, I collapsed, and it was sudden. I am scared about the unpredictability. I have always been an employee/student that exceeds expectations and puts forth 100%, even taking on extra assignments. Now my medical team, friends, and husband are all questioning if I should continue working and going to school. I don’t expect a magic bullet of an answer; just hoping to find my way on this one without giving up everything I have worked so hard towards.

I hit that wall the first time pretty soon (5 years) after PsA diagnosis (age about 42). At that stage I only had PsA, Crohn’s, Raynauds, psoriasis and mild secondary Sjogrens.

The key for me was to not view it as all-or-nothing. I was in a senior management role in a mining company, but I’ve always been good at and enjoyed the technical side too, so I made it my goal to get into consulting and work my way sideways to a job in the same career that I could have complete flexibility in the hours I do, and still really fulfilling work and participation in the industry. That way I wasn’t giving up the things I had worked so hard for, just shifting in focus and logistics. A key component of this was setting up working for myself (own company) and accepting substantially lower pay for the first couple of years until I got my reputation and client base established.

That has worked really well for another 7 years, when in the last couple of years my Crohn’s flared and couldn’t be medically controlled so I had to have another resection, then my immune system added added recurring myocarditis, small vessel vasculitis, OFG, and high-risk smouldering myeloma. A couple of months ago it seems the pneumonia I got twice from too many steroids has started off emphysema. I’m 47. To top it off, this week, I have COVID. With all of that, I’ve been unable to work since December last year and am on income insurance. So I would highly recommend if you don’t have a portable income insurance policy, you look at getting one, because it has certainly made a difference.

We still don’t seem to be getting things under control in my heart, so I may have to consider a claim for TPD, even though that’s not what I want. A client asked me on Sunday to do what should have been 4 hours worth of work by Thursday - I warned them I wasn’t sure I could get it done. I tried my hardest but just could not solve the problem till Friday, so failed. I must admit that level of unpredictability and unreliability is probably just too big for any job to be able to provide flexibility for.

Still though, I won’t make that decision before I’m sure I’m there. And I would point out I’ve tried every TNF blocker, all the traditional DMARDs, Stelara and Anakinra, but I’m still not sure I’m there, and it sounds like you don’t think you are either.

There are lots of options to give yourself breathing space - 3 months unpaid leave (or you might even have sick leave or long service), dropping just one commitment that is the least important to you, going part time on a trial for 3 months. If you’ve got a supportive boss, don’t be afraid to talk it through with them too.

It is a really hard spot to be in, but my experience of hearing people on this board, it is often temporary and passes, either as the person gets better treatment, or a major life stress is removed. But if you’re feeling this one won’t pass, don’t rush it, and remember it is never all or nothing - there are always lots of options.

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I stepped into part time work many years ago. I’m a teacher by trade. When my first daughter was born I tried teaching online instead of in a middle school classroom, and found that it worked quite well. After my second was born I was hit hard with PsA. I had always thought that I would go back to full time teaching at some point, but that wasn’t to be. My kids are now 20 and nearly 16 years old. I’m working close to twenty hours a week tutoring, and doing a combination of working for a school district with fragile kids, and private. I also do pet sitting, primarily cats.

Honestly, it’s working. I’m able to volunteer with a cat rescue and with my Temple, but also can generally step out when needed. I’ve also had the accumulation of autoimmune conditions and loads of surgeries. I manage.

The point is, I agree wholeheartedly with @Jen75 . There are ways to continue working AND excel in your field. But you may want to consider doing it from a different direction.

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Welcome @Ra21barnett, I hope you find good and helpful counsel while plugged in to Living with PsA. You’ll find that the heart behind those who respond to your obviously pretty intense condition, share ideas and thoughts with pure intentions…I sensed that right away and it really helped build trust while gleaning from those who have walked this road much longer than me. I have found that my best decisions are made from a platform of rest rather than while physical manifestations of all things PsA related are raging AND being very busy/stressed, We might not be able to control those flares but in removing whatever “triggers” we can allow the physical/mental being time to reset. So, a sabbatical, time off that is long enough to let the smoke clear could give new direction and hope. While so engaged in responding to life, (the tail wagging the dog) the urgent tends to crowd out the necessary and we tend to loose perspective. Because I too am high energy (was) and high achieving (was), it took a lot of discipline to find that “off switch” that just lets us rest and rest fosters good decisions and fresh perspective. Medically…I was fast tracked through 3 failed biologics and on to Rinvoq and it has been a game changer giving me a good 75% remission and acceptable mobility between mostly self induced flares…and really, no side effects, yet. That was longer than intended…welcome here!

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Twenty years going at that pace would have consequences for anyone really. You’ve the job, the study for extra Masters and serving on varying boards. So what was the goal? What was the goal of achieving all you have?

I’m a lawyer and now a legal decision maker. My goal was to make a difference to others. Yes really. I’m doing that every day thankfully but from home, with a reduced target because I have PsA and Crohn’s.

Infact I’ve spent the last three days off sick due to a Crohn’s flare. My Crohn’s tends to be on the mild side and is basically left untreated presently because my excellent PsA med works so well and I don’t want to go back to possibly untreated PsA whilst still frequenting my bathroom too much. I’m therefore kind of waiting for my PsA biologic to run its course really. Thankfully it’s not looking like it presently and is still going strong three years on. So I continue to try and manage the Crohn’s usually fairly successfully looking at it long term.

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Opps something went wrong and it decided to post my comment when I hadn’t finished.

Developing a cluster of autoimmune conditions like you have and several of us have, changes things whether we like it or not. Most of us react just like you are doing, with complete panic and horror. But we do find our way through once we attend to that goal for doing everything in the first place. @Amos is 100% right about the best decisions coming from a place of rest. Our medical conditions force that place of rest, again whether we like it or not. Use it wisely.

With everything you’ve achieved to date there is probably a myriad of ways to continue on but not at the same pace, but with the same psychological reward if nothing else, whilst still taking care of the monetary reward too. Don’t fall into the trap that without you continuing to achieve at pace, you’re failing. That’s just the goal of the neverending hamster wheel which serves neither you or indeed anyone else any purpose.

So back to the question of what was the goal of achieving all you have to date?

For me I manage both PsA and Crohn’s because I use pacing. I pace everything I do with periods of simple rest. Because if I don’t do that I hit a wall of exhaustion, tears and temper tantrums. And feel dreadfully ill whilst spending far too much time in my bathroom too, when I’d rather be lying on the sofa.

Pacing is deadly boring and deadly dull but it works. It dials down an exciting life too for sure. But it really works too. It permits me to do all the things I want to do but not all at the same time. It does make life less exciting but so what? It gives me more time with the people I care about and my gorgeous dog and that brings me smiles and laughter.

Google the Spoon Theory to learn more about pacing. Because of your medical conditions you now have too few spoons. Obviously none of us want too few spoons but if we learn to use the ones we have wisely then things can still be achieved. And actually achieving with too few spoons makes the achievements consequently far more treasured.

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I’m in the process of reading “when the body says no The hidden cost of stress” by Gabor Mate. Pretty eye opening. It’s tough to back off. I’ve had to do a lot of it lately too.