Struggling with work megathread

Coping
#1

I wanted to create a thread that can be used to share experiences about how PFS patients cope with work. If you’re a more moderate to severe case, and particularly if you have neurological symptoms, holding down a job in this nightmare can be difficult, particularly the first couple of years. This thread can be a place where we share advice about how to deal with things when they get particularly rough.

I didn’t work an office job for 2 years after PFS, but if you are struggling with work, some of the things I recommend if you are able.

  1. The biggest piece of advice I can give is if you are able, work around your symptoms. What I mean is plan on getting shit done at the times of day when your symptoms are at their best, if possible. That’s not always possible if you work a service or field job, but if you work an office job, speak to your boss about having a more flexible schedule. For example, my brain is at its peak from about 10am - 1pm, then 4pm - 8pm. I would try and fit my most intense work into those periods, and try to find low effort tasks I can coast through, or meetings, in that afternoon time period. It doesn’t always work but the payoff is worth it.
  2. Fit as much as you can into your ok days, but try to do at least something every day. This is like planning for a rainy day. You know you’re going to have days with PFS where you can barely get out of bed, so I like to get ahead as much as possible so those bad days don’t pile up and put me behind.
  3. If you can, talk to your boss about your symptoms. This isn’t appropriate for everyone, and you may just have a toxic work environment and shit boss. But if your boss is ok, tell them that you have bad days every now and then, and that you’ve been suffering from a rare disease. If you’ve been there for a while and it hasn’t affected you too much, it shouldn’t matter. Not appropriate everywhere though.
  4. On your bad days, just coast. There’s nothing wrong with that. If you have enough ok days, your bad days shouldn’t be as noticeable. Sometimes I used to just read news all day, or do very light touch work like responding to easy emails.
  5. If you can’t maintain a job in your current field, there is nothing wrong with finding a job you can maintain.

Most importantly, be kind to yourself.

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OhMan's Story: EMERGENCY. Brand new severe PFS symptoms after brief use
#2

Thanks brother. Pray to GOD. HE will never turn blind eye on his people.

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#3

I find it hard to get through my workweeks. Ever since getting PFS my overall zest and energy is much lower. The weight of the loneliness and lack of physical relief because of this condition just makes it harder to recharge in my spare time. The inability to have intimacy robs me from perspective for the future and that certainly has an effect on my daily capacity for work.

I need to be planning my days off ahead of time because I simply know that I am just overworked every few months. That wasn’t the case before PFS for sure. I really don’t get that many days off in a year so it’s not convenient at all.

It also affects how comfortable I am interacting with colleagues and talking about my life outside of work. It’s draining to hear your colleagues talk about all the things they went and did with their kids, girlfriends and wives and all the adventures they have together when I feel any hope for a similar experience has been rendered impossible for me by this condition.

The housing market has gone completely insane and if I want to escape the endless and ever-increasing monthly rents I would basically need to find a girlfriend who also has a job and then together we might have enough income to ever get a mortgage.
But guess what… turns out it’s hard to build a relationship when your libido is zero and you are unable to have or give the sexual intimacy that a healthy relationship requires. So not only am I affected physically I am also affected financially.

Bottom line is PFS fucking sucks and even though I suffer from libido loss and sexual symptoms it reaches into every other aspect of my life one way or another.

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#4

That is one of the hardest things about PFS as well - the inability to recharge. I remember when I was working full-time at my previous job, it was so hard to explain to friends and family why I had to literally go home on a Friday afternoon and pretty much lay on the couch until Monday morning. You just need to get as much rest as possible to even remain half-human.

The loneliness also sucks.

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#5

Dear Mitch.

Thank you for creating this thread.

I find your pieces of advice as very valuable, especially for those who have neurological symptoms.
As I told you in our podcast series, in my case I can’t handle neither visual nor auditory impressions so
basically whenever I step of out of my house I feel there is an audiovisual tsunami that constantly comes over me, wherever it might be; on a bus, on the sidewalk, in a store, a library, basically any space in society.
I keep working as a teacher, and I am a wreck when I come home, every day from Monday to Friday.

The irony of all this is that I get so much positive feedback from my students and my boss, that is the headmaster of the school where I work. They basically say that I am one of the best teacher they’ve ever had.

It’s so sad that I can’t enjoy this wonderful energy and appreciation that they are transmitting to me.

But once again, thank you Mitch for every piece of advice. I am sure many of us will benefit from them.

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#6

Feel free to share any advice you may have for others too :slight_smile:

#7

You are doing good in the world. You are useful and needed. Be glad for that.

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#8

I’m an engineer and work day and night. I work from home and PFS began for me at the start of the 2021 holiday season shortly before our break. My AR activity shut completely off and my body got right to work drying up and hemmorhaging soft tissue head to toe and has not let up. As work wound down I took a backseat and a low profile. I told my project lead that I was having health problems when she asked if I’d be willing to travel but didn’t elaborate.

I’d already scheduled the last two weeks of the year as vacation but since there was no more work I also stopped logging in the week prior. My life interests having ceased I spent those weeks driving around looking for a place to die. I found a good spot but was unable to go through with it. When work resumed in January I told my manager that I was having a serious health problem. I described it as a metabolic disruption that might cause me to act erratically but that I’d try not to let it interfere with work. He expressed understanding and support and offered leeway and options should I need them.

The problem I’m facing now is time. I’d told the manager I’d be seeing a doctor and the doctor visits have come and gone. My condition has worsened and I had to turn down a training class as I described it ‘health-wise I don’t have the attention span’ and suggested he give the spot to another engineer on my team who was on the chat. The other guy messaged me the next day and told me he thought my excuse was hilarious and made him LMAO. I was tempted to tell him it wasn’t meant to be funny but I didn’t want to bum him out. I don’t want to bum anyone out. The whole vibe on our team was always work hard and have fun. I’ve been at my company for seventeen years and suddenly I’m not me anymore…I can’t expect people to understand that. I think at some point my manager is going to ask how long this mystery illness is going to last but god willing I’ll be dead by then.

I guess I don’t really have any coping advice, I’m just a guy who used to be a hard worker and a problem solver that took on any challenge with good humor and now am completely lost and at the mercy of this merciless shit.

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#9

@mstone I had to finally leave work after many years of trying to keep it going colleagues from past and present noticed the changes in me as my abilities fell away. I could no longer function with them socially either and felt like a stranger on nights out. My 1nce high standing took a major hit . The old reputation kept me in the game for a longtime.I called in many favours. I lost my cognitive function from about 2008 and left 11 years later. Working from home a few days per week helped me for the last few years. So continue with that some of the time if u can and stay as long as you can but don’t do it if its taking u down. . Despite not missing the pressure, embarrassing moments, awkwardness and the feeling of dread from leaving the office on a Friday afternoon through to Monday. I do miss the camaraderie even though it was painful. Work became a major feeder for my pfs which wasn’t good. However It did distract at times especially when I pulled the odd rabbit out of the hat and recieved accolades. Were our own worst critics. I also dropped 1, day then 2 towards the end which also helped.
Show your boss the literature on pfs the same one devised to give to a Dr. It’s compelling and should hold u in good stead.
I have no doubt I could still be there as I wasn’t as bad as I thought but I chose to let it go to try to focus on my health. I’m not sure if it was the right decision. I’m certainly less irritable without it sitting on me and suffocating me.
I’m not strong enough to bring this to an end either. But I also have a little voice in my head which tells me what if things were just about to turn a corner and you killed yourself. There’s always a chance even though it feels as remote as Andrew becoming King . I actually think our odds are better.
Think of the life you had, you never know!!!.
I know how bad this is but keep going. Fuck this disease and the bastards that brought it to market.i don’t know if this helps at all as I don’t know what to say especially when one is severe

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#10

That really does encapsulate the destructiveness of PFS. What a torrid disease.

I really hope you can find the strength to see this through; much easier said than done but I hope you find resilience. Stay strong man.

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#11

I feel like I’m at that crossroads myself, I just go to work to pass the days, months etc. It doesn’t really feel like I’m living it just feels like I’m skipping time. If I didn’t work I’d probably sit in my room all day and become more isolated, so it’s a bit of a mix of emotions for me.
Getting energy to do things is very hard and I can definitely understand why people some people just can’t work.

I have that question in my head constantly, what if I did something stupid and a few months or years later we could be living a better life, we just don’t know what’s around the corner or what future we’ll have, but if we end things we certainly have no future.

I do have feelings of dread and anxiety myself many times going to work, I usually feel awful in the morning like really bad after waking, then near the end of the day I feel less anxious, I don’t know why but it’s been constant, I’ve no idea if it’s to do with hormones after waking.

But as of now all we can do is hang on in as best we can and hope medical technology becomes cheaper and easier to implement, good enough to were we can actually fix things instead of playing Russian roulette with drugs we don’t fully understand.

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#12

I moved recently from the North East to Southern East Coast.
So I don’t even have a job at the moment. Which is really getting to me big time BUT this condition at the very least dampens every good experience and at worst makes something like work EVEN A GREAT JOB a burden.

When I was teaching back up north this condition made the job almost unbearable. Yea there were pockets of the day/week where I wouldn’t be thinking about it and I might have a normal or somewhat pleasant moment but by and large I didn’t wanna get out of bed and go. I dreaded it but at the same time was releived I had a purpose/place to go during the day.
Under normal circumstances I would’ve just went to work and adapted and just found happiness as I was a very resilient kid/guy. I always was.
Even if I was having a terrible moment I would always think of the good things that make me happy and it would just role off my back. I found many things as comforts that would get me through pretty much anything.

Since all of this??? That old quality in me has become less and less easy. I HATE how this has poisoned every well for me.

But anyway looking for a new job sucks because I have to work obviously but it’s only going to add more stress into my life because at the root of everything is you know what.

I’m just venting idk if I even make any sense.

But when I was teaching I definitely couldn’t deal some days and my students got the bad end of it. NOT in a sadistic way or anything I mean I wasn’t at my best and just left them with a lot of independent work with a small amount of instruction if I knew they could navigate through it. I just couldn’t deal but I had to. I couldn’t even muster the enthusiasm to speak much some days. While EVERYONE else has zero clue and living their normal lives.

Ppl would always ask “What’s wrong? You’re not yourself” You know how much that killed me?
Having to lie and hide. Awful just awful.

But I managed my day according to what I could take and how I was feeling. On top of dealing with parents and administrators omg. Some days were truly a war zone internally for me.
And I would be snippier and short with some students that were truly trying behavior wise.
I’m only human. But they were always in good care plus I had an assistant so if I really couldn’t deal like on the verge of having to go home she would take over but that was rare.
I know I sound awful but we actually managed to have fun in that class and they learned well albeit I could’ve been much much better but I didn’t have the strength.

Now idk what the hell im doing. It hasn’t been a good couple of weeks.

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#13

I can’t imagine being a teacher with PFS. I imagine the audiovisual sensory overload would be extremely difficult, plus the stress of managing a classroom. Normal teachers find that hard, let alone someone without a stress response.

You guys are heroes.

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#14

I’m a data protection officer for which I need to be sharp in order to formulate correct legal advice. It’s been a challenge to say the least. I struggle where I did not before. Most of my day, PFS is all I think about and my work suffers because of it. Obviously this is the depression speaking, but I couldn’t care less.

Luckily, I have been put on partial disability (because of depression, not PFS obviously since no one recognizes it), so I can manage financially. Until they no longer believe me I suppose.

Working a couple of days in the week has proved better than not working at all. So I’m grateful that’s still possible. But can’t think too much about how I will keep doing this for, maybe, the rest of my life? It’s gonna be a short life then.

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#15

Thanks for your support and kind words, Mitch.

As for constructive advice for anyone out there trying to work, I would say sleep and diet are keywords in my case:
If you can sleep between 6-8 hours per night, do. Don’t go to bed late and wake up the next day and go to work, I can’t handle anything, neurologically speaking, if I sleep less than 6 hours.

When it comes to diet, I normally skip breakfast on a workday since I crash cognitively for some hours after eating. So my best work hours are before lunch.

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#16

I am going to echo what others have said here. I had my first “real” job out of college at a large bank in an office. I started going through PFS after about 2 years. What was already a stressful, mostly unenjoyable job became nearly impossible. Somehow, I managed to keep it together. I had a few meetings with managers trying to explain my situation while also breaking down in tears a few times. I kept it vague, but let them know it had to do with my health.

I managed to suck it up for another 2+ years, miraculously. Looking back, I really am not sure how I even did it. I guess I just didn’t see an alternative. Once covid hit, we began working remote. It was a great change considering I, like many others, no longer had to spend nearly as much time doing things like getting ready, commuting, ect. As of November of 2021, I put in my two weeks notice with no other jobs lined up. Despite the benefits of being remote, having more time alone with my thoughts, isolation, and of course focusing on the shittiness of PFS I think put me over the deep end. I was also pursuing a leadership role on my team, which I kind of regret, as it only amplified the stress of my work.

I’m currently trying to figure out my new trajectory, whether I want to pursue an advanced degree, or simply find a better job. I am still experimenting with HCG injections as well, which have their pros and cons. I think HCG provides a bit of relief, particularly in the physical department, but also I sometimes feel a bit more inconsistent.

I feel Mitch’s breakdown is about as realistic as I can get. Basically, do the best you can the parts of the day you feel your best. The problem with my job(and probably many jobs) is that I worked with time-sensitive deadline and didn’t have the option to just put it off until later. My ideal job would have much more flexibility for bad days and even the ups and downs of same day fluctuations.

I’ve been working a bit on learning some programming languages on the side, as it seems like a reasonable career field that should definitely allow for remote work and maybe even a flexible schedule, but my background is in finance, so it’s definitely not in my wheelhouse.

While I feel HCG can be hit or miss, exercise, to be specific, resistance training with weights, is the one thing that consistently provides me an overall benefit mentally and physically. Having the motivation and energy to actually do it is a whole other beast.

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#17

I’ve gotten so used to PFS that I think that the problems I suffer, I suffer alone. Hearing people say things that I’ve been saying for years like “skipping meals because it causes a cognitive crash” is something that is so profound to me. I know we’re not the only ones but sometimes I am in full on denial about having a chronic illness. So bizarre. For the record, I do this as well, because it is very obvious there is a connection with eating and cognitive impairment.

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#18

Yeah, it’s another reason I get my best work done in the morning or late afternoon. The period after lunch is always terrible.

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#19

I’m a full time teacher with PFS and newly diagnosed inflammatory bowel disease. Is it easy? No. Is it better than sitting at home and musing about how hard life is? Absolutely.

I do as much as I can, and will continue to do so. No point moping and feeling sorry for oneself, it doesn’t benefit me nor anybody else.

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#20

My impression is that many of us do fight on a every day basis, and very much so.
Maybe this forum sometimes is a space, one of the few places, where we can actually vent
our frustration and despair. Hence it may seem that people here just feel sorry for themselves and moan, but I believe the majority here are putting in an incredible amount of effort in order to live a life that somehow resembles the one we had before being affected by this condition.

Also, some people can’t actually work anymore, they are, for example, so overwhelmed by their neurological symptoms or cognitively impaired to the extent that they had to quit working.

I for one as a teacher have just terrible days, like yesterday, where audiovisual impressions get so unbearable that I am just completely dazed and dizzy and go and hide somewhere between classes. Sometimes I can’t barely stand up or walk straight because of sounds and visual impressions.

Then there are some days, like today, that are bearable and I feel proud of myself because of the work I do and the progress the students make because of me.

I don’t know if people should be staying at home or go to work, it’s not a either-or-thing.
Not the way I see it, anyway,

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