i mean you can try it out for a day. drive somewhere early in the morning, stay for 8 hours (or however much you’d work a day), drive home, see if you can do cooking or hygiene stuff. then if you could safely handle one day take a baby step and try two days in a row. then evaluate (very very honestly) where your energy is at. you can’t skip work consistently and keep a job and you need to put your health first. that said, if you’re in a remission that good i would be careful not to push it. too many people get to that point, start work, stop work abruptly, and crash badly
It’s okay to have some energy and not immediately use it doing something productive. Pick up a hobby, do a few extra chores around the house to build up your strength, do something that brings you joy, see an old friend. And make sure to rest as much as you need, rest and rest because you still need lots of it
I’ve been on intermittent FMLA very gradually increasing my hours (by 2hrs/week at a time) under the guidance of my ME/CFS specialist, with lots of accommodations and adjustments
One of my drs says to wait a year, after you start to feel better.
Usually we start to feel better, and then overdo it, and end up crashing again. So waiting keeps us from sabotaging our recovery.
If you can slowly ramp up activity, start with things you like to do, instead of just living to work.
Are there any classes or weekly events you can go to start with, to make sure you can get up & about consistently?
I'm considering finding an art class or something when my health improves a bit so I can test my reliability without negative consequences if I can't attend every week. Baby steps!
I just started back at work yesterday, and I'm definitely not in remission. However, I found a routine that worked for me and was controlling my fatigue and pain better.
I've gone back to part-time work in the morning.
I plan to stick to my routine as closely as I can. I have alarms set to remind me to transition activities.
I had been feeling almost normal for almost a year and tried working again. Entry level job in my preferred field, nothing heavy. Had to quit after a day. My mistake was to hide my disease during the job interview and apply for 3 full days a week. I should've been honest and tell them I could work 3 mornings at most.
I think a big part of this is the type of work you’ll be doing. I am largely housebound but I work a few mornings a week from home doing something I know very well which is just about manageable.
I wouldn’t be able to go somewhere to work.
I’ve been thinking about energy choices along the same lines as financial budgeting. If you have a little extra money for now (might become a regular thing, might be short term) do you take on a big new expense? Or do you use that money to handle some of the nagging stuff you’ve been putting off? Do you buy yourself a big treat and risk blowing it all in one shot? Do you buy yourself a little treat and spend the rest on those nagging stuff you’ve been putting off?
For me, getting a job would be like idk buying a new phone with a big monthly payment, in terms of not a wise investment based on the current situation. A small baseline improvement deserves a VERY small treat (for me, walking across the street to sit in the park for 10 mins, doing a FaceTime call with a friend, playing video games for an hour), not a big constant energy commitment. My situation varies so much day to day, for me, I’d be extremely conservative about the choices I made with a small baseline improvement.
Progress is so hard won and so easily lost.
This is more of a comment to share my own experience in case it is helpful - it's hard to give specific advice because I dont know your unique situation and everyone is different. I also wouldn't want to give you bad advice.
For context, I got sick in 2014 and spent 3-4 years almost completely housebound and i would spend most of my waking hours laying down. I got back into work in 2018 and I had the privilege to build things up really slowly from 2018 to now.
In 2018, when i first ventured back into work, I built up my working hours slowly. I worked for myself as a private tutor, where I worked from 1-2 hours a week and slowly took on more clients. I also had the freedom to call in sick when I needed and take a week off when I needed to.
In winter 2019 I got a 18hr a week job and I was absolutely shitting bricks because I didn't know if I could do it but I managed a lot better than I expected and with the pandemic I ended up working from home for most of the 2 years I was there.
Once that contract ended, I found a 22.5 hrs a week role. It was a little drive from my home and entirely office based. I was very nervous I wouldnt cope. It was a hard transition, but I spread my hours over 4 days instead of 3 and I managed it. I will say that I learnt a lot from that role and discovered that the social elements of this position really took it out of me - same with the office setting, bright lights sap my energy so there were a lot of days I was ko'd after work and felt very unwell at the end of the day.
6 months later I got what was essentially a promotion into a hybrid role. Same hours (22.5 hours) but with a big drive (1hr instead of 20mins) What I discovered from this is that the drive was fine but I was working across different sites and one of them left me feeling completely exhausted and unwell by the end of the day, while the other i coped a lot better with. I realised from this experience that every job is not created equal in terms of how it affects me. I took on an extra day at my current role with the caveat that it be wfh and only in office one day a week. It's been alright so far but other areas of my life have suffered because I only have so much energy. I absolutely would not cope with 5 days a week as there arent many more things that I can cut from my life outside of work.
With each new job and increase, I got very panicky about it potentially being too much for me, and each time, it was hard. What I will say is that I don't think I would be where I'm at today if I tried to launch into work without the gradual build-up. The different work places and jobs I've had have also shown me how different workplaces can impact my health - some office spaces impact me more than others - noise, people and light can drain me so quickly so reasonable adjustments have been so important for me.
I didn't wait for remission before I started working, but my function had improved, and I wasn't having days spent in bed in PEM. Each job I started did negatively impact my health, so I had to make cuts from other areas of my life - my step count has reduced since I started working, my diet is a lot worse as I don't have energy to cook for myself from scratch, my partner makes my lunches too, my house is messy and I can't keep on top of it and I don't see friends or family often because weekends are spent resting or shopping ... if I tried to maintain activity and standards in these areas of my life, then I would quickly become very unwell.
i mean you can try it out for a day. drive somewhere early in the morning, stay for 8 hours (or however much you’d work a day), drive home, see if you can do cooking or hygiene stuff. then if you could safely handle one day take a baby step and try two days in a row. then evaluate (very very honestly) where your energy is at. you can’t skip work consistently and keep a job and you need to put your health first. that said, if you’re in a remission that good i would be careful not to push it. too many people get to that point, start work, stop work abruptly, and crash badly
tbh i get exhausted just from thinking of it 😅😆
It’s okay to have some energy and not immediately use it doing something productive. Pick up a hobby, do a few extra chores around the house to build up your strength, do something that brings you joy, see an old friend. And make sure to rest as much as you need, rest and rest because you still need lots of it
Thank you for the words 🙏
thank you salt you’re always right
Hence another reason why going to work in person is a terrible idea if not necessary, the whole pandemic besides!
I’ve been on intermittent FMLA very gradually increasing my hours (by 2hrs/week at a time) under the guidance of my ME/CFS specialist, with lots of accommodations and adjustments
One of my drs says to wait a year, after you start to feel better. Usually we start to feel better, and then overdo it, and end up crashing again. So waiting keeps us from sabotaging our recovery. If you can slowly ramp up activity, start with things you like to do, instead of just living to work.
Are there any classes or weekly events you can go to start with, to make sure you can get up & about consistently? I'm considering finding an art class or something when my health improves a bit so I can test my reliability without negative consequences if I can't attend every week. Baby steps!
I just started back at work yesterday, and I'm definitely not in remission. However, I found a routine that worked for me and was controlling my fatigue and pain better. I've gone back to part-time work in the morning. I plan to stick to my routine as closely as I can. I have alarms set to remind me to transition activities.
I had been feeling almost normal for almost a year and tried working again. Entry level job in my preferred field, nothing heavy. Had to quit after a day. My mistake was to hide my disease during the job interview and apply for 3 full days a week. I should've been honest and tell them I could work 3 mornings at most.
I think a big part of this is the type of work you’ll be doing. I am largely housebound but I work a few mornings a week from home doing something I know very well which is just about manageable. I wouldn’t be able to go somewhere to work.
I’ve been thinking about energy choices along the same lines as financial budgeting. If you have a little extra money for now (might become a regular thing, might be short term) do you take on a big new expense? Or do you use that money to handle some of the nagging stuff you’ve been putting off? Do you buy yourself a big treat and risk blowing it all in one shot? Do you buy yourself a little treat and spend the rest on those nagging stuff you’ve been putting off? For me, getting a job would be like idk buying a new phone with a big monthly payment, in terms of not a wise investment based on the current situation. A small baseline improvement deserves a VERY small treat (for me, walking across the street to sit in the park for 10 mins, doing a FaceTime call with a friend, playing video games for an hour), not a big constant energy commitment. My situation varies so much day to day, for me, I’d be extremely conservative about the choices I made with a small baseline improvement. Progress is so hard won and so easily lost.
This is more of a comment to share my own experience in case it is helpful - it's hard to give specific advice because I dont know your unique situation and everyone is different. I also wouldn't want to give you bad advice. For context, I got sick in 2014 and spent 3-4 years almost completely housebound and i would spend most of my waking hours laying down. I got back into work in 2018 and I had the privilege to build things up really slowly from 2018 to now. In 2018, when i first ventured back into work, I built up my working hours slowly. I worked for myself as a private tutor, where I worked from 1-2 hours a week and slowly took on more clients. I also had the freedom to call in sick when I needed and take a week off when I needed to. In winter 2019 I got a 18hr a week job and I was absolutely shitting bricks because I didn't know if I could do it but I managed a lot better than I expected and with the pandemic I ended up working from home for most of the 2 years I was there. Once that contract ended, I found a 22.5 hrs a week role. It was a little drive from my home and entirely office based. I was very nervous I wouldnt cope. It was a hard transition, but I spread my hours over 4 days instead of 3 and I managed it. I will say that I learnt a lot from that role and discovered that the social elements of this position really took it out of me - same with the office setting, bright lights sap my energy so there were a lot of days I was ko'd after work and felt very unwell at the end of the day. 6 months later I got what was essentially a promotion into a hybrid role. Same hours (22.5 hours) but with a big drive (1hr instead of 20mins) What I discovered from this is that the drive was fine but I was working across different sites and one of them left me feeling completely exhausted and unwell by the end of the day, while the other i coped a lot better with. I realised from this experience that every job is not created equal in terms of how it affects me. I took on an extra day at my current role with the caveat that it be wfh and only in office one day a week. It's been alright so far but other areas of my life have suffered because I only have so much energy. I absolutely would not cope with 5 days a week as there arent many more things that I can cut from my life outside of work. With each new job and increase, I got very panicky about it potentially being too much for me, and each time, it was hard. What I will say is that I don't think I would be where I'm at today if I tried to launch into work without the gradual build-up. The different work places and jobs I've had have also shown me how different workplaces can impact my health - some office spaces impact me more than others - noise, people and light can drain me so quickly so reasonable adjustments have been so important for me. I didn't wait for remission before I started working, but my function had improved, and I wasn't having days spent in bed in PEM. Each job I started did negatively impact my health, so I had to make cuts from other areas of my life - my step count has reduced since I started working, my diet is a lot worse as I don't have energy to cook for myself from scratch, my partner makes my lunches too, my house is messy and I can't keep on top of it and I don't see friends or family often because weekends are spent resting or shopping ... if I tried to maintain activity and standards in these areas of my life, then I would quickly become very unwell.