If you have a friend with Chronic Fatigue Syndrome you’ve, no doubt, heard about how she’ll crash after an eventful day. But hearing about such a thing and understanding it are two very different things. What amount of activity is ok and what isn’t? Does she crash all the time or only every once in a while? How can you make sure that you aren’t the cause of one of her crashes?
The answers aren’t always simple, but it can help to understand a little more of what’s going on. I created the following image to explain what it feels like. It’s not based on science (though there are studies showing what’s going on, but they are way harder to understand than my cute little pictures!), just based on my life. For those of you who ever wondered what my life is like- here it is as best as I know how to describe it. I do these calculations every single day.
***UPDATE June 2019*** Have you seen the new movie Unrest? It’s an amazing insight to the every day life of someone with ME/CFS! You can see these calculations in real life as you watch it:
Awesome explanation!!! Thanks
Thank you for checking it out!
That is the best explanation I’ve ever seen!
Thanks Brenda- I’m so glad you read it!
What an excellent illustration, sums it up beautifully! i went shopping with my friend yesterday, half a day and only 4 shops and I’m having a crash day!
Thanks Joan. Shopping is really one of the worst things! It’s amazing how much energy it takes. I’m glad you got to go shopping with a friend though, even if it was only 4 shops. 🙂
Thank you thank you thank you! What a great explanation 🙂
Wow….you are amazing!!!! I just found your site (thanks to pinterest…btw thanks for the awesome baptism art!!!!). I am so impressed with your positive attitude and your willingness to share with all of us your challenges. I have a strange question regarding your health. I wondered if you have ever experienced strange hot sensations radiating from various parts of your body. For example….you know how all of us get a hot sensation on our ear once in a while but it goes away really quickly? Well I would get that hot sensation but it would last a long time and spread to one side of my face or head. I would get hot sensations coming from my armpit just on one side at a time or my foot or my side. Anyway….I just wondered if this has ever happened to you? I don’t have an official diagnosis but they were talking about CFS and Fibrom. In the end they decided my body cannot tolerate stress anymore….and while it took a good year to feel “normal” again zoloft seemed to be my key to health. But I still wonder what it is that my body is really dealing with. If I don’t take the meds I start to have problems again so I realize it is part of my life from now on and I am ok with that…I just sometimes wonder about it all. Sorry for the rambling…..
No pressure to answer. 🙂 Brenda
Hey Brenda! Thanks so much for your comment- I am so glad to hear you are feeling better with zoloft! As far as the hot sensations go, I haven’t ever experienced them like you have. I don’t have fibromyalgia though, so it might be that the heat sensations go along with that rather than CFS. (I am just guessing on that). Sorry I’m not much help! I follow a CFS blog written by a woman who is constantly doing research and keeping up with current findings, you might find more helpful information there. Here’s her link: http://livewithcfs.blogspot.com/
Hopefully that leads you to some better information. Good luck!
Hey I kinda wanted respond to your comment. I actually really believe the hot sensations are from the CFS. I was diagnosed with it when I was 16 and I’m 30 now. I seem to be getting worse as I get older, only just this last year have I been getting the extreme heat sensations. To me it’s like a burning heating pad that’s attached to a certain area at the time that releases a large amount of heat enough to make you feel like that body parts constantly burning. I get it so bad some times that I’m beat red
I found that reiki helped relieve the hot spots. We are all different but it worked for me relieving energy blockages.
Hi Brenda, I know your post is nearly a yr old but I have just read it. An explanation given to me by a reflexologist is that people with CFS burn up when the immune system is trying to kick in but your body doesn’t have the energy for it.
Caroline, That explanation sounds very interesting- I’d like to look into it more!
Hi Jessica, my CFS therapist told me yesterday that most people she sees do get hot flare ups, I showed her your site said she would have a look at it.
Hi. A lot of people diagnosed with either CFS or fibromyalgia are finding that lyme disease and other tick borne illnesses are causing their diseases. I’d strongly suggest looking into it…
I get different temperatures in different parts of my body at the same time. It used to be quite extreme but has settled down. I was diagnosed with CFS but they looked at fibromyalgia too but what you say about stress I think is very true.
Great explanation!!
Thanks Virginia!
Great explanation! This is exactly what happens to me. Thank you for posting!
I’m so glad it represents how you feel!
Your detailed explanations are so thorough that it really helps me to better explain it to others
Kat, I’m so glad! I really hope these little illustrations can help others who are going through the same things I am.
Hi, brilliant visual piece to explain ‘crashes’. I have shared it on my blog https://sailingpenguin.wordpress.com/2015/02/26/spoons-beans-and-the-science-of-crash-calculations/#more-646 and among my friends and family too.
I’m so glad it has helped! Knowing it’s been used to help family better understand illness is the best compliment of all.
My teenage daughter has CFS and it’s so hard trying to get her to understand managing her energy – think this may be very useful – also useful to show her teachers. Thank you.
So glad it could help!
Perfect explanation- the visuals are so powerful. I will share this with people who 4years on from my diagnosis still don’t understand my ME. Thank you
So glad it helps! I’m sorry there are still people 4 years later who don’t get it- but unfortunately after 9 years of being sick myself, I am not surprised.
Brilliant explanation, thank you so much for. The graphics make it so much easier for people to understand, and yes, this is EXACTLY how life is with ME.
I’m so glad it helps!
I love this! It’s so helpful to have it in an info graphic thing. I’ve got a feeling I only have two beans. I feel like Jack and the beanstalk. (If only they were magic beans…)
Tanya, I definitely wish they were magic beans, too!
Thank you for the excellent example. I am taking a step further, I am buying beans today. I am going to put beans in a glass and remove and add beans as the energy is used or replenished. Great Idea.
Lisa- what a fantastic idea! It’d be a great way to keep track of personal pacing, and perfect for when family and friends informed on how you’re feeling 🙂 If you have the energy, I’d love to see a picture when you’ve got it set up!
Thank u… That has really helped me
There’s no graphic 🙁
AmandaM- I’m sorry! For whatever reason there has been a huge boost in this post’s popularity in the past week or so. With all the extra hits, it seems to be working a bit slow (so the image can often take a very long time to load)
Graphics are back! I sent this to my family and friends as its such a clear way of explaining. Thank you.
I still have difficulty knowing how much energy or how many beans i actually start each day with. It seems to vary when i haven’t over-extended on previous days. I also crash without reason, others must do too?
I’m glad they’re working!
While there are times when the reason for my crash is obvious (using all my beans), I also definitely have days when I crash for no apparent reason. To me it seems like there have to be things going on in my body that are taking up all my energy and therefore causing the crash. (After all, there is SOMETHING going on inside of us making us feel so horrible all the time! Maybe our immune systems are busy tackling something we can’t see… or something) I, of course, have no proof or reasoning behind this, it just seems like a likely scenario in my head and helps me get through the days when I don’t ‘choose’ to crash.
Best explanation of this I’ve seen …
Thank you very much for this!
A great explanation. Thank you.
Thank you so much. Great explanation..xxx
Thanks!
I concur with everyone above it is a great explanation – I wish I could easily print the information and picture so I can send to people. I have ended up putting your information and graphic into a word document. Hope that is ok – I just want people to understand how those with CFS live especially because we don’t look ill.
Heather, That is a fantastic idea! I’m glad you went ahead and made your own. I love the idea of adding one to this post for everyone to download and print- I just added it to my ‘to-do’ list. (I’m in the middle of a huge crash right now, so it will have to wait a few days, but hopefully you all understand!)
Thank you makes so much sense to me now was struggling to understand why this was happening on and off to me xxx
I’m so glad it helps!
My Daughter has just forwarded your post to me. I suffer with Fybromyalgia & at the moment having a rough couple of days after going bowling with the Family on Mothers Day. Will have to get some Beans. Thank you for some useful comments
I’m glad you liked it! Hope you recover soon!
Just wanting to send hugs, that’s all 🙂
I absolutely love this explanation. It rings completely true for me and reading it, I had one of those “Ah-ha!” moments of insight so thank-you. Just wondering if you have an easily printable version of this? I’d love to print it out as both a reminder for me and to give to my (non internet savy) parents.
Hi, just wanted to say I love your graphics and explanation, it really does show what it is like. I am quite good at pacing myself and will do things I want knowing I will have to pay for it, but never really looked at how this can have a knock on effect over several days. I also get hot feelings, worse if I am extra tired or stressed and normally joke I have a broken thermostat.
Thanks for your comment Stella! I’m so glad you like the graphics 🙂
Hi. I’m 38 and have had bad osteoarthritis for 20 years among other ills. The arthritis isn’t even totally painful or debilitating all the time. I have the odd day when I don’t feel too bad but then I get overworked by my family but it is so unpredictable that I can’t work and be reliable enough for an employer and my chaotic homelife with an uncaring family means I’ve never been able to put into action better ways of dealing with things. Recently CSF has come to my attention and though still undiagnosed I believe I have it. I do get many of the symptoms very often that I believe my GP has passed off as other things, labyrinthitis for example. I have also been having crashes for at least 10 years and absences for even longer. I mean to see the GP about it soon to find out for sure but I feel it’s already too late. I was sick and tired of this, my families bullying ways, my mothers excessive and irresponsible hoarding and having nothing to look forward to years ago…. I don’t have words to describe quite where I am mentally/emotionally right now and every day but I’m close to giving up. I just get sicker and sicker and there is no peace for me as I do not have my own home or friends to turn to, just my family and their demands, always the demands, even when I am so obviously in pain and bone tired. I even have days when I’ve overdone things a day or two before and I cannot do a thing and I get put down and left to rot, not even offered a drink…. so many times I’ve had to stagger to a tap and drink the nasty bathroom water with a pounding dehydration headache. There is no escape from this. This is not living, it’s slow death and it’s not my choice or fault. What can I do? Where can I go? I’ve had enough!
Chris, I’m so sorry! I wish there was something I could say to help. If you ever feel like a little online support would help- I’m always here!
Thank you so much. This is the best piece I have ever seen to explain how and why I can do heaps one day and nothing the next. I found your piece on pinterest and have shared it with my friends on Instagram with a link to here. Thank you again. I hope today has good parts for you. Cherrie
This is great, thanks so much!
This is brilliant and I ll be sharing it with my family and friends so they can understand why I bounce and crash.. Thank you x
fantastic! I shared this with family so that means they likely won’t talk to me for a while. lol argh
Thank you so much ! this is great and helpful !! can i share it in my blog ?
Of course- share away!
Totally tru
Excellent explanation!!
I am the one with cfs and found it very easy to understand as I don’t understand it my self
This is awesome! I hope people finally understand!
Thank you so much for posting about CFS! This is the best interpretation I have ever read! How can I follow you? Do you have a specific page?
I was diagnosed back in 1987 and this is about as close to what our crashes amount to. I want to do so many things and yet no matter how many times I try the come down always surprises me. I still sleep a definite average of 12 to 15 hours a day, when I nap I’m down for 3 hours. Family and the love of my life make it bearable. So many friends I’ve lost touch with because of this disease.
I’m experiencing a crash at the moment, after spending a weekend in my hometown with my mother and sister. This is the best description of what I go through that I’ve ever seen!
Wow, I just come to realisation of this disease after a friend highlighting your post. I am not sure whether you have found any cure. So it seems like it begins at a very young age. Is there a possibility this might be happening to children too? Or what is the earliest age one can be diagnosed with CFS?
I’ve heard of people as young as 11 getting ME/CFS. I’m not sure exactly how young you can be, but definitely can start in childhood.
Great post! Thanks a lot for the good explanation the best I have seen. Is it okay for me to copy your post and drawings on my Instagram account? Referring to your blog of course.
Kind regards,
Anni
I’d be happy for you to share! Anything to help people understand 🙂