As someone living with #MECFS and a multitude of other chronic health *situations*, it’s the oddest things that put me into a PEM cycle.
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As someone living with #MECFS and a multitude of other chronic health *situations*, it’s the oddest things that put me into a PEM cycle.
1) photography for my small business. The cognitive process of thinking of how to place the items, and the physical fatigue of doing so, plus the act of taking photos in bright light… it’s the hardest part of my job and takes *weeks* for 2-4 new listings to get posted.
2) Cooking. Again, both physical and cognitive processes that, if I’m not careful and pace myself, will put me into bed recovering for 2-5 days afterward.
Also, before anyone says they get tired “doing life”, too, please don’t. It’s dismissive. PEM (post-exertional malaise) is a clinically significant worsening of symptoms like fatigue, pain, and cognitive function following minor physical or mental exertion in people with ME/CFS and can be delayed 12-72 hours, but can last weeks or days - so pacing myself is key. ME/CFS patients also have worse quality of life than virtually all others with chronic illness, its critically low.
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As someone living with #MECFS and a multitude of other chronic health *situations*, it’s the oddest things that put me into a PEM cycle.
1) photography for my small business. The cognitive process of thinking of how to place the items, and the physical fatigue of doing so, plus the act of taking photos in bright light… it’s the hardest part of my job and takes *weeks* for 2-4 new listings to get posted.
2) Cooking. Again, both physical and cognitive processes that, if I’m not careful and pace myself, will put me into bed recovering for 2-5 days afterward.
Also, before anyone says they get tired “doing life”, too, please don’t. It’s dismissive. PEM (post-exertional malaise) is a clinically significant worsening of symptoms like fatigue, pain, and cognitive function following minor physical or mental exertion in people with ME/CFS and can be delayed 12-72 hours, but can last weeks or days - so pacing myself is key. ME/CFS patients also have worse quality of life than virtually all others with chronic illness, its critically low.
Specific examples you give I think make a great deal of sense. I don't have your specific condition, but certainly experience milder versions of exactly the same things from any activity that requires the same kinds of combinations of mental and physical exertion.
I am sorry that some of the things that you need to do and are non-optional in your life and business are also triggers for this issue.
️ I hope you are usually able to balance the action with the required rest afterwards! 
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Specific examples you give I think make a great deal of sense. I don't have your specific condition, but certainly experience milder versions of exactly the same things from any activity that requires the same kinds of combinations of mental and physical exertion.
I am sorry that some of the things that you need to do and are non-optional in your life and business are also triggers for this issue.
️ I hope you are usually able to balance the action with the required rest afterwards! ️@likelyjanlukas hey, thank you for replying and for your kindness. I’m very sorry to hear that you can relate, even if in a milder way. That’s still valid, and it matters, too.
I used to be similar… maybe only a 20% reduction in functioning but over the last 2 years it’s closer to 50-60% drop when it happens.
I hope very much that you do not have MECFS, too. It’s quite a battle and does tend to occur alongside other chronic conditions.
Wishing you wellness. 🫶
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As someone living with #MECFS and a multitude of other chronic health *situations*, it’s the oddest things that put me into a PEM cycle.
1) photography for my small business. The cognitive process of thinking of how to place the items, and the physical fatigue of doing so, plus the act of taking photos in bright light… it’s the hardest part of my job and takes *weeks* for 2-4 new listings to get posted.
2) Cooking. Again, both physical and cognitive processes that, if I’m not careful and pace myself, will put me into bed recovering for 2-5 days afterward.
Also, before anyone says they get tired “doing life”, too, please don’t. It’s dismissive. PEM (post-exertional malaise) is a clinically significant worsening of symptoms like fatigue, pain, and cognitive function following minor physical or mental exertion in people with ME/CFS and can be delayed 12-72 hours, but can last weeks or days - so pacing myself is key. ME/CFS patients also have worse quality of life than virtually all others with chronic illness, its critically low.
@britt Thank you for explaining what PEM means.
That sounds horrible, I'm really sorry
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As someone living with #MECFS and a multitude of other chronic health *situations*, it’s the oddest things that put me into a PEM cycle.
1) photography for my small business. The cognitive process of thinking of how to place the items, and the physical fatigue of doing so, plus the act of taking photos in bright light… it’s the hardest part of my job and takes *weeks* for 2-4 new listings to get posted.
2) Cooking. Again, both physical and cognitive processes that, if I’m not careful and pace myself, will put me into bed recovering for 2-5 days afterward.
Also, before anyone says they get tired “doing life”, too, please don’t. It’s dismissive. PEM (post-exertional malaise) is a clinically significant worsening of symptoms like fatigue, pain, and cognitive function following minor physical or mental exertion in people with ME/CFS and can be delayed 12-72 hours, but can last weeks or days - so pacing myself is key. ME/CFS patients also have worse quality of life than virtually all others with chronic illness, its critically low.
@britt Hey I have been meaning to say for some time that your product photography is STELLAR. I love photography but good product photos are a whole skill I don’t have - you have to really know what you’re doing and be super consistent and detailed. Truly I’m very impressed - you seem to crank out new designs quickly AND post them with excellent photos. I’m like uhhhhh how did that happen so fast??? I could never do that.
So yeah, that’s all.
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@britt Hey I have been meaning to say for some time that your product photography is STELLAR. I love photography but good product photos are a whole skill I don’t have - you have to really know what you’re doing and be super consistent and detailed. Truly I’m very impressed - you seem to crank out new designs quickly AND post them with excellent photos. I’m like uhhhhh how did that happen so fast??? I could never do that.
So yeah, that’s all.
@scott Wow, thank you so so much for this. It means a lot to me. I take 100% of my photos, and don’t use any AI.
In my 20’s in SF, I was a contract photographer and had such a great time doing that when my body allowed. Now, things are simpler and I don’t have a full studio (just an iPhone and a light box!), but I still put the same love into my work.
It really means so much for you to say something. Thank you.
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As someone living with #MECFS and a multitude of other chronic health *situations*, it’s the oddest things that put me into a PEM cycle.
1) photography for my small business. The cognitive process of thinking of how to place the items, and the physical fatigue of doing so, plus the act of taking photos in bright light… it’s the hardest part of my job and takes *weeks* for 2-4 new listings to get posted.
2) Cooking. Again, both physical and cognitive processes that, if I’m not careful and pace myself, will put me into bed recovering for 2-5 days afterward.
Also, before anyone says they get tired “doing life”, too, please don’t. It’s dismissive. PEM (post-exertional malaise) is a clinically significant worsening of symptoms like fatigue, pain, and cognitive function following minor physical or mental exertion in people with ME/CFS and can be delayed 12-72 hours, but can last weeks or days - so pacing myself is key. ME/CFS patients also have worse quality of life than virtually all others with chronic illness, its critically low.
@britt I finally had to quit working then thinking too hard for a couple hours incapacitated me for days.
Solidarity.
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@britt I finally had to quit working then thinking too hard for a couple hours incapacitated me for days.
Solidarity.
@naga solidarity right back at you. I quit my corporate job years back, tried to go to Uni again but had to do the medical leave thing, and now I’m hoping my ‘lil side business will sustain me because I can work at my own pace. So far, so good.
I hope you have something you can pour yourself into when you are feeling well. You deserve that.
