There is so much misinformation out there about many chronic illnesses. And not only misinformation, but also pure ignorance.
Many people, upon hearing the name of an illness, get a mental association of it that’s rarely true. I know this from my own illness, ME/CFS, as most people hear the term ‘chronic fatigue’ and think that we are mostly ‘just’ fatigued. But the core symptom of ME/CFS is actually not chronic fatigue (while that is a huge component), it is Post Exertional Malaise. This means I may physically be able to do something one day, but the next day my function is lowered, I cannot do the same thing, and not only are my symptoms worse, but I may experience new symptoms. I may even be stuck in this lowered function for good. This is not the same as the ‘boom or bust’ cycle like many people with other chronic illnesses experience, where they over-exert themselves and they crash. PEM can be measured. One study looked at how ME/CFS patients vs another group of patients with a different illness, but who also suffer from chronic fatigue reacted to a cycling test. The next day, the other patients could perform the same task, if not better, but the ME/CFS patients performed much worse.
I think it’s important that people get to know more about what it’s like to live with a chronic illness, and especially yours. So tell us…
What’s the most important thing you want people to know about living with your chronic illness?
Let’s share our experiences and knowledge in the comments.
“How are you?” “I’m a bit meh today” Actually means “I am struggling to stay upright and do words, my HR is 112 walking on the flat, my ears are ringing, my hands and feet are like ice, and my kitty litter needs changing, but I’ll probably crash back to bed before I get that far and dinner will be muesli if I’m lucky... but you probably don’t want to hear that.”
Here you go. Diddle “From dialectal duddle (“to trick”) (16th century), and diddle, duddle (“to totter”) (17th century), perhaps dissimilated from dialectal didder, dither (“to shake, tremble”), from Middle English dideren (“to shake, quiver, tremble”) and Middle English bididren (“to seduce, deceive”)” - so when I say ‘diddling along’ it means tottering, shaking, quivering and trembling, and I’m deceiving the listener to thinking I’m reasonably okay. “
Now there’s a question. I haven’t a clue. I’ve only lived here (Yorkshire) a year and used it for at least a decade. I suspect it’s Kentish in origin but as I’ve lived all over (31 houses in 57 years) I can’t be certain and I may have just invented it, I am wont to do that.
This is such a good question. Giving me (as your posts always do!) much food for thought.
The first thing that came to mind for me was the one thing I got crystal clear about the other year: that it’s not them that’s living with it, it’s me.
I think off the top of my head, that’s the most important thing I’d want others to know. That meant they could keep their opinions, definitions and lack of understanding to themselves. All whilst I got on with the work and the research and the understanding of what I was living with.
My decisions and choices on the back of my understanding that noone around me (medical professionals included) knew anything about led to going against what I was told was possible or opinion of what I should or shouldn’t be doing so this really helped with that.
Interestingly leading on to something else I also wish others knew…that these choices and decisions were incredibly challenging to make. They were far from easy but it’s often felt that many times onlookers believe that they are. But maybe I need to witness myself in all of this? And i’d feel less emotionally charged. Hmm something for me to sit with.
This really resonates! And yes, I am the one living with it, not anyone else and the decisions we take are challenging and exhausting and no fun at all, and can be very lonely too. Great thoughts here ❤️🌸
Something to sit with further…because I reckon we have this idea that when choice lays before us that there’s somehow an option of two wonderful ways to go. Like making a decision between hmmm do I go to Barbados this year or Jamaica? Know what I mean?
When in reality, it’s do I go with the known and know there’s no way out and no way of getting better or do I go with the unknown where I don’t know if that’s still the case there or whether something else awaits? Both are equally as treacherous and not a decision anyone wants to be in the position of making.
Sooo true!! Those decisions we make everyday are crappy decisions and no fun at all, and often with very few results to show. I think decision fatigue leads to bunrout too.
I’m feeling you Madelleine and Amber. I remember I told my doctor, psychologist and rheumatologist that I was struggling with making decisions to prevent PEM because it was never between ‘good’ and ‘bad’ but mostly. between ‘essential’ and ‘essential’ so I’d sacrificed clean floors in order to keep my toilet and sinks clean, showering in order to manage food shopping and socialising to keep energy for daily little walks to keep migraine at bay... they each told me I was about 2 years ahead of most newly diagnosed people in accepting the hard realities of pacing with ME/CFS. I cried because this was one time I did NOT want to hear “You’re doing the absolute best that you can.” Which also meant “For now at least, this is as good as it gets.” To then have laypeople suggest things I might not have tried? Maddening.
That the way I look very often does not correlate to how I feel. I’m getting a little tired of being told how good I look, especially because it comes with this expectant pause that suggests I then need to say that I also FEEL good.
I agree with all the suggestions so far. I’ll add: respect my (lack of) energy. Don’t ask me to do a bit more, stay a bit longer, walk a little further. Unless you’re prepared to come over and provide full time, full service care for a couple of days when I end up in PEM.
Just believe me and don’t belittle my experience
Exactly! And believe that I’m not over-exagerating (but often under-exagerating).
Oh yes I forgot the down playing of my symptoms
Yeah, it’s something so many don’t understand…
“How are you?” “I’m a bit meh today” Actually means “I am struggling to stay upright and do words, my HR is 112 walking on the flat, my ears are ringing, my hands and feet are like ice, and my kitty litter needs changing, but I’ll probably crash back to bed before I get that far and dinner will be muesli if I’m lucky... but you probably don’t want to hear that.”
If it wasn’t so tragic and devastating, it’s actually hilarious and sooo true!
I say I’m Diddling along. Which means exactly what you’ve written. If I say not good, I’m probably about to die, at a minimum collapse.
Is ‘diddling along’ a local dialect word where you live, Tamsin? I love it! I also like Nora McInerny’s “Terrible, thanks for asking!”
I’m gonna use both of those from now on, ‘Diddling along’, and ‘Terrible, thanks for asking.’
Here you go. Diddle “From dialectal duddle (“to trick”) (16th century), and diddle, duddle (“to totter”) (17th century), perhaps dissimilated from dialectal didder, dither (“to shake, tremble”), from Middle English dideren (“to shake, quiver, tremble”) and Middle English bididren (“to seduce, deceive”)” - so when I say ‘diddling along’ it means tottering, shaking, quivering and trembling, and I’m deceiving the listener to thinking I’m reasonably okay. “
Now there’s a question. I haven’t a clue. I’ve only lived here (Yorkshire) a year and used it for at least a decade. I suspect it’s Kentish in origin but as I’ve lived all over (31 houses in 57 years) I can’t be certain and I may have just invented it, I am wont to do that.
This is such a good question. Giving me (as your posts always do!) much food for thought.
The first thing that came to mind for me was the one thing I got crystal clear about the other year: that it’s not them that’s living with it, it’s me.
I think off the top of my head, that’s the most important thing I’d want others to know. That meant they could keep their opinions, definitions and lack of understanding to themselves. All whilst I got on with the work and the research and the understanding of what I was living with.
My decisions and choices on the back of my understanding that noone around me (medical professionals included) knew anything about led to going against what I was told was possible or opinion of what I should or shouldn’t be doing so this really helped with that.
Interestingly leading on to something else I also wish others knew…that these choices and decisions were incredibly challenging to make. They were far from easy but it’s often felt that many times onlookers believe that they are. But maybe I need to witness myself in all of this? And i’d feel less emotionally charged. Hmm something for me to sit with.
This really resonates! And yes, I am the one living with it, not anyone else and the decisions we take are challenging and exhausting and no fun at all, and can be very lonely too. Great thoughts here ❤️🌸
Something to sit with further…because I reckon we have this idea that when choice lays before us that there’s somehow an option of two wonderful ways to go. Like making a decision between hmmm do I go to Barbados this year or Jamaica? Know what I mean?
When in reality, it’s do I go with the known and know there’s no way out and no way of getting better or do I go with the unknown where I don’t know if that’s still the case there or whether something else awaits? Both are equally as treacherous and not a decision anyone wants to be in the position of making.
Sooo true!! Those decisions we make everyday are crappy decisions and no fun at all, and often with very few results to show. I think decision fatigue leads to bunrout too.
I’m feeling you Madelleine and Amber. I remember I told my doctor, psychologist and rheumatologist that I was struggling with making decisions to prevent PEM because it was never between ‘good’ and ‘bad’ but mostly. between ‘essential’ and ‘essential’ so I’d sacrificed clean floors in order to keep my toilet and sinks clean, showering in order to manage food shopping and socialising to keep energy for daily little walks to keep migraine at bay... they each told me I was about 2 years ahead of most newly diagnosed people in accepting the hard realities of pacing with ME/CFS. I cried because this was one time I did NOT want to hear “You’re doing the absolute best that you can.” Which also meant “For now at least, this is as good as it gets.” To then have laypeople suggest things I might not have tried? Maddening.
Ooh I so feel you on this! The ‘as good as it gets’ feeling is rough.
That as much as I may want to do things with you, it is not always possible, even though you think I can.
So true 💕
That the way I look very often does not correlate to how I feel. I’m getting a little tired of being told how good I look, especially because it comes with this expectant pause that suggests I then need to say that I also FEEL good.
Oooh yes! This one is soo true, I hate it too.
I agree with all the suggestions so far. I’ll add: respect my (lack of) energy. Don’t ask me to do a bit more, stay a bit longer, walk a little further. Unless you’re prepared to come over and provide full time, full service care for a couple of days when I end up in PEM.
YES!! When I say stop it’s cos I’m at my limit!